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Starting chemo May 2014

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Re: Starting chemo May 2014

Pixie p.s nice to meet you and find someone hereon the same treatment plan as me xx ruth xx
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Re: Starting chemo May 2014

Hello Everyone,

 

Well GP wasn't much help re fatty liver. He just said diet and stop eating rubbish, which is what I have been doing since starting chemo at the end of April lol ! My taste buds have been and continue to be weird so I tend to eat what I fancy rather than what I should be eating whoops !

GMC - I asked when my portacath would be removed and they recommended waiting until after my first mammogram next March, which seems an age away, but I guess it makes sense to wait until then. I will have to have it flushed every 6 weeks though. I hope your feet improve soon.

Sodastream- Yes, it does make sense to me to continue with the remaining 4 chemo sessions and I hope you are doing ok.

Pixie - Are you having 12 weekly Taxol? A break every 3 weeks seems like a good idea. I was doing fine on mine until week 9, then I seemed to hit a wall and experience all side effects in one wallop 🙂 The nurses told me alot seem to hit a wall at week 9/10, but if you have been having breaks , hopefully you won't 🙂

 

So its hi ho hi ho its of to chemo I go today at 11am, it will seem odd returning after a months break, but I feel like a pro now with my bag packed with my kindle, snacks,water and I have already looked to see what is on tv at the time I am there as I need the tv to focus when the cold cap first goes on 🙂

 

It is a long path we are all travelling, keep your chins up ladies 🙂 xx Ruth xx

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Re: Starting chemo May 2014

Good evening Ladies

 

Hope everyone is well.

How did you get on today at the Dr's Ruth? Good luck for the chemo tomorrow too.Sheryl your family fb group slimming club sounds a good idea. My weight yo yo's at the moment and I'll have to do some serious exercising soon.- once the feet have improved.Ladycroft , I spoke with BC nurse today about my feet and she said they definately will get better but it can takes quite some time! Linda, Sorry your arm's a bit sore for the rads but thanks for the tips . I may try the Volterol for my arm too - seems I have developed cording! Ladycroft - what a way to celebrate your birthday,last rads and a hol in France  -home of bubbly of which you  will have to pour a glass or two! !!!

We're off to Sidmouth for 3 nights on Thursday - hence the change in the weather but will take the necessary clothes. I was meant to have my portocath removed today but it was cancelled first thing. Bit frustrating but it's just been postponed til next Wed when I go for my pre op tests.

 

Take care everyone, Gill X

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Re: Starting chemo May 2014

Hi Ruth

Jumping over from June as I'm on the weekly taxol too. Sorry to hear about all your side effects and that all your treatment had been delayed. I have next session tomorrow as well. I'm doing the cold cap as well and it always feels so long. I have not done too badly so far on the side effects apart from some mild tingling in feet but am having my 6th taxol session tomorrow and I understand it is cumulative... I am having a break after each third session with an extra week off, feels like looking forward to a holiday! In fact I'm taking that week off work too this time and having a staycation! Other main side effect is the hot flushes which are such a nuisance, have to carry a fan with me at all times!!

Before BC my diet was ok but I didn't eat enough veg and have made a big effort to eat more, am buying organic now and cooking everything from scratch and it has been really enjoyable trying new recipes. I'll put me ingredients into the bbc food website and see what they come up with. I was on AC for first four cycles and suffered badly with nausea so just ate what I could then but taste changes with taxol have been mild for me. I heard that if you have taste changes ginger, lemon and honey are a good combination. Also have seen a nutritionist and herbalist through the Haven . Herbalist made up some tea for me which I did not like but she said if I didn't want to drink it, that herbal teas that have liquorice in them are good. For neuropathy she recommended berries and a small amount of pith from citrus fruit or pomegranate which is also pithy. I've been making smoothies for breakfast to up my veg intake with 50% spinach, banana and different fruits and adding milled linseed. Great for digestion. There's a new health food shop that just opened near me and my brother went a bit mad buying me a load of smoothie boosters! The other thing is to drink loads of water which I've never drunk enough of and tend to feel thirsty in the evenings, was told to front load water intake by drinking a glass as soon as I get up and filing a bottle in the morning to drink through the day.

Good luck with your GP and tomorrow.

Px
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Re: Starting chemo May 2014

Ruth - yes I can now understand why they want you to finish. My CT scan before I started chemo showed a couple of enlarged nodes under my arm but the chemo worked its magic as when I had surgery no cancer was detected in the 5 nodes they tested. Proves that chemo is so worth it despite the awful side effects.
Hope chemo goes well for you tomorrow, it will probably feel strange having had such a long break. X
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Re: Starting chemo May 2014

Hello ladies,

 

Sodastream and Ladycroft - I have already discussed at length the pros and cons of continuing with the last four chemo sessions versus the long term damage on my bodys digestive system. He strongly feels that as I had 10 lymph nodes affected that were removed, plus the surgeon who removed them expressed surprise at the amount of lymph nodes affected, considering the small size of my lump ( 8mm ), they are both very keen for me to have all 12 Taxol chemo sessions.

 

I am off to my GP in a tic to deal with my fatty liver on the advice of my oncologist, lets hope it doesn't mean yet more hospital appointments and that ti can be controlled by tablets and avoiding certain foods 🙂

 

I am have my chemo tomorrow too so its all appointmetns here this week !

 

I hope everyone else is doing okay xx Ruth xx

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Re: Starting chemo May 2014

Morning girls ,

Ruth -hope your last chemos go ok but I agree with Sheryl ,talk to your onc first. I still have numb feet amlmost 7 weeks on.

Sheryl I too have put on loads about 10-12lbs since Feb, I was doing well on SW too. I have been eating everything you can't on SW.cheese , butter ,bread more cheese etc so not too surprising. Will make areal effort after rads end next Friday, 3/4 's of the way done 5 more to go.

xx

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Re: Starting chemo May 2014

Ruth great news about the ct scan. It's always a worrying time waiting for results but a great relief when they turn out to be good news.
The hernia sounds awful. My digestive tract was getting so damaged from the chemo so I think I got off lightly which helped by not having to have the last two doses. If things get too bad for you ask the oncologist to weigh up the effect of having last few cycles of chemo versus the long term damage on your body (especially as your ct scan is clear).
I'm starting my diet tomorrow, I was going to go back to slimming world but have decided to use Facebook to help me. I've created a closed group of family that all want to lose weight and we're going to post a picture of the scales each week and support each other. For me it's lose weight or go out and buy bigger clothes which I really don't want to have to do.
Hope everyone else is ok and moving forward with their lives. X
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Re: Starting chemo May 2014

Hello Ladies,

 

Sodastream - I am about to have my 4 remaining chemos from next Tuesday, after a months gap. I saw the oncologist last Friday and although my toes are still tingling and numb he wants to steam ahead but monitor it obviously. Good to hear you are able to do your exercises 🙂

 

I can't remember if I told you all the results of my CT scan from the other week as my brain is so addled at present. No evidence of cancer, but the chest pain I was experiencing is due to a conditon called fatty liver disease which has developed since my last scan in the summer, plus a small hiatus hernia too. No surgery required but simply to watch foods I am eating and lose weight, although this wekend I have felt sick and been in alot of pain where my liver is located, so seeing my GP tomorrow. My diet has been so awful since commencing this chemo treatment as I have had so many stomach problems ! I was on the high energy diet for the FEC for 3 months which consiste dof potato/rice and bread ! So I am not surprised my body is protesting 🙂

 

Hope everyone else is doing okay xx Ruth xx 

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Re: Starting chemo May 2014

Linda thanks for the tip re radiotherapy. I've just moved onto doing the advanced exercises as it has now been a week since my mastectomy. I have really good range of arm movement but its not until you try to raise your arm above your head you realise your restrictions. I'm usually quite lax and start but never finish things so I must make sure I do my exercises regularly to make it easier during radiotherapy. It sounds simple saying you lay there with your arms above your head for 10 minutes but at the moment I'm managing 10 seconds so have a long way to go.
Sorry to hear the tamoxifen is making you emotional too, like you said that's all we need on top of everything else.
My hot flushes have been worse at night the last couple of nights and after reading your post think it may be down to enjoying a glass of wine. I also had a really bad hot flush yesterday whilst going out for lunch with my dad and step mum until my step mum realised she'd accidentally put the heated seats on!!!.
Ruth I hope the swelling in your legs is going down. How many more chemo sessions have you got left? X
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Re: Starting chemo May 2014

Hello Ladies, hope everyone is looking forward to the weekend. After today I will be 8 Rads down with 17 to go! It's easy compared to chemo just the travelling and waiting around makes it tiring.The only thing I have found so far is that I haven't as much movement in my left arm as I thought I had after the mx, the position they put me in with arms above my head can be quite painful but I have managed by taking paracetamol before I go and rub voltarol on my arm aswell, seems to be working ok.

I also started taking Tamoxifen and almost felt like I'd lost the plot last weekend , had a complete meltdown..cooker and head came into the conversation just felt that I couldn't cope anymore and was so emotional. I stopped taking the clonidine tablet that the doctor had given me to control the hot flushes and things have improved on the emotional front although I'm back to crying at the drop of a hat. I also feel like an old woman, aching back, kness and anckles. After reading some of the other ladies experiences of this I am going to try and switch brands , see if that helps. It's not going to be much fun if these side effects last for the next 5-10 years of medication.

I'm off to the boob microwave now... Smiley Wink looking forward to a Friday night glass of Red later ( not good for the hot flushes -  but I'm not giving everything up !! ) xxxxxxx

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Re: Starting chemo May 2014

Go back to consultant and say after speaking to a relative you found out your aunt and cousin had it then they will test you lol
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Re: Starting chemo May 2014

Hello Ladies,

 

Sodastream - You sound in good spirits, I am glad all seems to be going ok 🙂 When I had the drain in under my arm, it stayed there for 10 days and I was draining upto 70ml  per day ! I was carrying my bottle around in a little shoulder bag they gave me . its surprising how quickly you get used to it, although I did forget about it a few times and dragged it behind me.

 

GMC/Ladycroft/Zonda - Yes the numb toes are a nuisance, interesting that none of your chemo was delayed but mine has been, I will ask oncologist why this Friday. I have been delayed by 3 weekly sessions at the mo, which is frustrating to say the least as in turn it delays my 5 weeks of Radiotherapy beginning. My ankles, feet and legs beneath my knees are all swelling up daily too. I am having to lay on the bed or levitate my feet to get the swelling to go down.

 

I just want to get all this treatment done and dusted now, but for me I still have 2 months or more in total.

 

I don't understand why we aren't all tested for the BRAC gene as whether the breast cancer is in the family or not, it must start somewhere surely? With two daughters I would prefer to be tested to safeguard them, but I am told that only 5% of cases are due to genetic issues and that the test is only carried out when there are other cases within the family.

 

Ah well keep your peckers up ladies ! xxRuth xx

 

 

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Re: Starting chemo May 2014

Hi all. The doctor phoned today to get fluid reading from drain and said as it was less than 50ml it could be removed. I managed to talk her into allowing me to keep it another day as my scar is so flat I don't want a fluid build up that needs draining off.
It feels so fantastic to not have a huge painful breast filled with cancer. I have my softie to balance me up although it was funny watching the nurse trying to fit me. My other boob was squashed flat in a crop top with little support and on the other side a pert pointy falsie. She pulled some stuffing out and then I thought she was going to put it on the floor and jump on it to squash it like my normal boob until I explained my other boob did look much better in a supportive bra and I'd sort it out at home. 😄
After reading your posts I feel I got off chemo lightly as I now have no side effects although don't want to jinx it as my eyebrows could still fall out. My hair has grown loads in the last few weeks however why is it the curly grey hair grows so much faster than my straight brown hair.
Keep smiling ladies we are so nearly there. X
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Re: Starting chemo May 2014

Morning Ladies,

 

Ruth, I haven't seen an oncologist since before my last chemo. I have mentioned the numb feet all the way through the docetaxol but no-one seemed too worried so it wouldn't appear to be going to delay any further treatment.My hopeful end date is delayed because of a couple of stays in hospital for infections . Also got to have this port removed before breast op. May know a date this week for the breast surgery.

Jan - glad you have a trip to France to look forward to. Once I have som e confrimed date i will be doing some serious planning.

Sheryl - how  are you feeling a couple of days on from your op?

Zonda - it'll be no bad thing to be full of anti-biotics when you have your op. At least your body won't be at risk of any infection problems.

I'm having to wear a finger condom as one finger nail is coming away but is still painfull when it catches on things. About 3 others are almost in the same state making it an absolute bugger to do up buttons or undo the foil off milk bottles etc. Worst of all I can't do my bead work - very frustrating. I've plastered them with nail polish in the vain hope that it helps them to stay on a bit longer and give the new nails underneath a chance to grow!

The weather here seems to have changed but hope it's better where you are,

Best Wishes, Gill X

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Re: Starting chemo May 2014

Hi Girls, 

Sheryl so glad your op went well and nodes were negative,

Ruth ,my feet are still numb and my left ankle keeps swelling up

Gill good news about your scan and hope your op goes well 

The 50 mile trip is ok we can do the lot in 2 hours dep on traffic on M25 ,I'm halfway through my 20 treatments (last one is on my birthday!) and left boob is a bit tender and very pink ,have put on so much weight though that my clothes are tight .am wearing those bras with no wires or fastenings which are a beggar to put on as they twist but very comfy .

Hope the rest of you ladies are getting through ok ,I'm planning my trip to France for the week after last rads and I can't wait to get there 

Hope we do have an indian summer .enjoy the weather ,not looking forward to the cold x

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Re: Starting chemo May 2014

Hi Ladies

 

Sodastream glad to hear all went ok with your op 🙂

 

GMC - Was your treatment delayed because of the numbness in your toes and feet? Seemingly this is what is causing my treatment delay, the oncologist isn't happy with the prolonged numbness, he doesn't appear so concerned with the other side effects I am experiencing, i.e the fatigue/swimmy head to name a couple.

 

But we soldier on, no other alternative I guess !

 

xx Ruth xx

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Re: Starting chemo May 2014

GMC, no she didn't say how long my immunity will be compromised and I didn't think to ask but my next surgery will be six weeks after my last chemo.  She said I will get loads of antibiotics and they will be monitoring me closely for infection.  I also have to have someone with me to sign in and out of the hospital and be prepared for an overnight stay.  The surgery is a day operation.  The first op I had I was not told I needed anyone at all with me so I assume the high risk of infection is the reason for needing a carer.  

Sheryl, I had the drain after my second op. I second the sofa, Xfactor and/or Strictly. Maybe add some chocolate.

Ruth, what a pity you have the delay but it is best for your body to be able to handle the Taxol.  You know that anyway, I'm sure, but it is still a bummer.  How weird to have numb toes, and you GMC, you poor things.  

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Re: Starting chemo May 2014

Good evening Ladies

Looking forward to Strictly tonight - and Sheryl it sounds like the sofa and x factor is where you should be too. Hope you are still feeling comfortable. Did they give you a little handmade shoulder bag to keep your drain in? At Frimley we were all given a heart shaped cushion and a drain bag made and donated by volunteers.

Great news Ruth about your Ct scan and sorry to hear about your hernia. I ,too, have numb toes and also the soles of my feet are numb and painful at the same time (which doesn't make any sense). Hope it doesn't last too long. It's so frustrating to have any treatment delayed isn't it as we build up a finish date in our heads!!! I thought I'd be done by Christmas but seems highly unlikely now.

Trish - happy to hear you've finished chemo and sympathise about the tiredness. Did your surgeon give you any idea how long our immunity systems are compromised for?

How did you get on with your radiotherapy Linda?

Jan, hope you are getting on OK with yours and the journey isn't getting you down too much,

Best wishes to all, Gill x

 

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Re: Starting chemo May 2014

Hi everyone. I'm home from having my mastectomy yesterday. I was last on the list so was starving hungry by the time I went down. Spoke to anaesthetist who said he would adjust my anaesthetic so I wasn't sick. They're were great and really put my mind at ease joking with me before I went under. I came round in recovery feeling great and wide awake and very with it. I had to wear a funny blow up jacket all night which had hot air being blown into it to increase my temperature to 37.5c to aid blood supply and healing. They tested 5 lymph nodes which were all negative which is great news. Have been sent home with a drain in and as soon as I walked in the door I got it caught on the kitchen handle so think the safest place for me is on the sofa in front of the tv. X
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Re: Starting chemo May 2014

Hello Ladies,

 

Sodastream - I hope your op went well xx

 

I saw my oncologist yesterday with ct scan results. No sign of cancer for now and no blood clots. But I have developed a hiatus hernia which would account for chest pain and breathlessness according to the oncologist anyway. I think I may have caused hernia lumping furniture about whilst having my massive clearout and springclean not so long ago whoops ! No surgery required just adapting food and taking gastro tablets.

He still doesn't want me to have remaining 4 Taxol until my existing side effects have cleared up as I cannot feel my toes at the mo ! So my taxol will now delay my Radio which was due to begin November and finish before xmas which is a nuisance. I see him again next Friday for dates to resume chemo.

 

Hope everyone is coping ok xx Ruth xx

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Re: Starting chemo May 2014

Well, I had my final chemo on Sept 3 and have been waiting impatiently to be better since.  My son, who had a knee op on Sept 10, has an exercise bike to help his recovery so I hopped on thinking I would start regaining my fitness.  After a half hour of slow cycling I had to stop.  I was so tired I had to have a lie down!  So next I decided it was time to start riding my horse regularly and get back my riding fitness.  Again, after a half hour I was as weak as a kitten and had to get off, go home and have a lie down.  The next day I was so stiff and still very tired.  I also tried dieting to lose the weight I have put on during chemo.  Needless to say, I have not been very successful there either.  

I am riding twice a week as this is the most I can manage and hope to try the cycling again but maybe for 15 minutes at a time. I have put the diet on temporary hold. I have just realised it has only been just over 3 weeks since the last chemo so I suppose I am trying too much too soon.

More surgery on Oct 15 and my surgeon told me that even then my immunity will still be very compromised by the chemo.  No sign yet of hair growing or of pins and needles in fingers and toes going away but I have started sleeping all through the night which is an improvement. However, I am beginning to think the hot flushes must now be all menapause rather than chemo.

Keep smiling, everyone still on chemo. It won't go on for ever and you will feel so happy when it ends.

Trish.x

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Re: Starting chemo May 2014

Good luck Sheryl, will be thinking of you. Hope the time goes quickly before you have your op. Meeting up next May sounds a good idea. Bone scan results were fine yesterday so was much relieved . My op should be in a couple of weeks hopefully. Also have to have portocath removed. Hope everyone is as well as possible and enjoying this good weather,

Take care, Gill

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Re: Starting chemo May 2014

Hi Linda. Yes you are right. I'm last on his list, would like to think he's leaving the best to last but probably more like the trickiest until last.
How was your last day at work? Have you started your radiotherapy too?
Was thinking next May we must all arrange to meet up to celebrate a year since we all started chemo. X
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Re: Starting chemo May 2014

Sheryl, am I correct in thinking its your op today? Thinking of you..good luck xxxxx
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Re: Starting chemo May 2014

Morning Ladies, how are we all today?

I'm at work..last but one day till I finish and I just want to leave now. I had some lovely flowers this morning from our Pipe Fitters !! A lovely surprise and thoughtful for men !. Smiley Wink

We finally moved Mum into my sisters at the weekend although her house sale is still lingering on, but at least this way she can begin to settle, she hated being all alone in the house at night and I wanted her moved before my radio started as I won't be able to visit her daily as I have been doing since dad died in April. 

I must share my milestone with you ... I had to shave my legs or rather shins on saturday and arm pits..1st time since May. It's coming back thick and fast, I have a full head of really soft fluffy hair albeit really grey although no way near enough to take off the hats and scarves which I am getting fed up of. I haven't worn my wig much as I just don't feel comfortable in it.

Jan - so sorry you lost your Mum, it's an emotional time for you in all respects so take time out for yourself, I know I haven't really had time to come to terms with losing my dad so suddenly earlier this year, as most of my time has been taken up with treatment, it was only after my chemo finished that the tears and realisation began and I'm still battling with it..

Ruth - Hope your CT scan goes well, let us know how you get on, I can understand your comments about your Dad and him not understanding what you are going through, I too have a brother in law that survived a cancer diagnosis, so everytime I have a treatment or issue it is compared to what he went through although it is completely different !! It really is annoying.

Gill - Hope you are well and get your operation date confirmed soon

Sheryl - what a good idea with the blog.. writing it down must help and I am with you about remembering what we have been through and what we will go through. It's been a hard journey and will, no doubt, change us all and our outlook on life. Too many of the people around us just expect us to go back to normal and forget, but we know it won't be that easy..

I start radio on Wednesday, the next part of my journey. I will let you know how I get on, i'm really getting jittery as I don't know what to expect when I get there, but I'm sure it will be fine..

Linda xxx

 

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Re: Starting chemo May 2014

Hi all, hope you've all had a good weekend.

Today I've been busy writing a blog of my cancer journey. I decided to write it as unlike some people I don't want to forget this time in my life as I think it will define the person I will become, stronger and not willing to put up with any s**t from people as life is too short. I've written it in mind that my friends and family will read it so have had to write an edited version as unlike all of you they would find it hard to read. If any of you want to read it the link is https://plus.google.com/app/basic/105103771668170906304/posts?cbp=p0q4f9ihi55h&sview=25&cid=5&soc-ap...
My breast is still growing so today I have once again packed away all my nice lingerie but I know it will only be until I get reconstructed and then I'm going on a major shopping trip.
Ruth sorry to hear about your dad, I expect you find it even more difficult that he's been through cancer yet doesn't understand what you're going through.
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Re: Starting chemo May 2014

Hello Ladies,

 

GMC - Thanks for the info on classes.

 

Sodastrem - I am glad they have brought your surgery forward, try not to worry and let us know how it all goes, I wish you the very best of luck.

 

My Dad is a very self centred person, when I told him that the oncologist had concerns and as a result I am being sent for a ct scan his reply was : Well I have had prostate cancer for 17 years so I don't know what you are worrying about mine is worse than yours ! My siblings and I are all totally fed up with him since he broke his hip in May. He tells me I am not doing enough to help !! He has never experienced chemo so doesn't understand the side effects and the tiredness that comes with it. I found myself losing it with him and saying look on the bright side Dad, if I get bad news next week you will have had 34 years longer on this earth than I will have had. I know I shouldn't have said it but he tries the patience of a saint at times. xxRuth xx

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Re: Starting chemo May 2014

Hi Sheryl, the discharge from the nipple must have been very scary and I'm so pleased they may get you in even earlier for your op. I do think we're very lucky in this area to have such good hospitals. Good luck tomorrow,

Take care, Gill x

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Re: Starting chemo May 2014

Ruth hoping that the CT scan is all clear, I know what you mean about trying not to worry but as much as you try it will always be there at the back of your mind.
When I took my bra off last night I had a stain in it which means my nipple is now leaking a discharge and if I touch a certain part of my lump then I have a bloody discharge coming out of my nipple. Needless to say this did have me worried so I phoned the breast care nurse who said it wouldn't effect the mastectomy but she would mention it to the surgeon and chase up my CT scan. I then had a call from the hospital saying they can fit me in tomorrow so I have to go for my pre op assessment and CT scan tomorrow ready for my operation on Friday, I said I'd been told it was on 30/9 not 26/9 but they said they'd just sent me a letter. Have left a message with nurse to find out which date it is but keeping fingers crossed that it is next Friday as I really want this cancer out now as it is no longer behaving itself.
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Re: Starting chemo May 2014

Hi Ladies

Ruth - the hospital where I will go for rads has a unit where they do all sorts of therapies including the "Look Good Feel Better" one that I went on. This is a nationwide charity and if you put the title in google you will come up with their website. You can then put your post code in to find out the nearest venue to you where they hold the classes. Really worth doing.

Hope everyone is getting on as well as poss. I had line care on my portocath today , maybe for the last time as surgeon wants it removed before he operates which could be mid oct.

Not a very sunny day here but hope it cheers up for the weekend.

Best wishes, Gill

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Re: Starting chemo May 2014

GMC how do you get involve din the classes? I have not been told anything about them or given any info? XX Ruth xx
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Re: Starting chemo May 2014

Hello Ladies,

 

Wax2014 - I am supposed to be having a further 4 Taxol. But after seeing the oncologist today, hes not happy with all the side effects I am currently experiencing i.e numb toes, light/swimmy head, but particularly the breathlessness and pain across my chest wall, so hes sending me for a ct scan at Mount Vernon next week and I am seeing him again next Friday.

Sodastream its interesting that you say you felt things were not right and worried about cancer returning, as when I asked the oncologist could the chest pain be a sign that the cancer has returned to which his honest reply was we shall see what the ct scan results yield but try not to worry, which of course I will. My initial diagnosis was an 8mm lump in my left breast, the lump was removed and the margin taken was clear.However i did have 10 lymph nodes removed with cancerous cells which is why they chose to hit me hard with all this chemo. The pain I am currently experiencing is under my right breast so we shall see. Good luck with your surgery. 

Ladycroft -  Thanks for the info regarding Mount Vernon and I hope you get on ok with your radio.Mine will be delayed now until it is decided what will happen with my remaining chemo sessions. I was supposed to be finishing chemo 7th Oct, having a 3 week gap then commencing my 5 weeks of radio at the beginning of November. So sorry to hear you lost your mum,

 

xx Ruth xx

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Re: Starting chemo May 2014

Hi Ruth, I finished my chemo on 20th August and am about to set off for my 4th of 20 radiotherapy sessions at Mt Vernon, if you bring your letter with you ,you can buy £1 tokens for the car park and if you park in car park B it's nearest the reception .plenty of space . Just hard to find from the postcode they give you.  My appts are between 2 and 3 as my husband works nights and this way we miss the rush hour (coming from Luton jct9 and then M25) request a time that suits you if you're not going on hospital transport. We've done the return trip from2 to 3 1/2 hrs dependent on traffic .

My fingernails have all gone and toes going same. Nail underneath is very ridged and thin so they'll probably have to grow out twice .Everything seems to be returning to normal except my feet are numb still  and sore knees. Not looking forward to taking Anastrazole for 5 years as causes brittle bones and menopause side effects. Been there done that already,but now wondering if me taking black cohosh for it then instead of hrt could have contributed to cancer.Just found out my great grandmother died from it and my 2nd cousin on her side had it too.

Hope we all get through the next leg relatively easily x Jan

PS to cap a crap year so far I lost my mum last week.

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Re: Starting chemo May 2014

Good evening Ladies

 

Good to hear everyone is either finished or close to the end of the chemo nightmare.

Ruth, I hope you feel loads better soon and can understand how you feel your body's had enough now. With a bit of luck the oncologist will suggest that it's time to stop that side of the treatment.

Linda- good tip about getting a few items on prescription as I hadn't thought about that.

Sheryl - hope you can do some really enjoyable things in the next few days before your op - as you say, fitted around all the other appts! Still, good news that the actual op will be behind you in less than 2 weeks.

If you ladies haven't yet been on a "Look Good Feel Better" master class I can thoroughly recommend it. I spent a lovely 2 hours playing with skin care and make up and came back with a goody bag that must have contained at least £200 of quality goodies.

Have now lost 2 toe nails!

 

Take care everyone , Gill

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Re: Starting chemo May 2014

Hi Ruth, sorry to hear you're struggling with chemo but you have done so well to get as far as you have especially as you've had to ave more treatment than average.
Linda thanks for the information regarding the hot flushes, mine have calmed down again but it's given me hope if they start again when I start tamoxifen then there is some help out there.
I saw the surgeon yesterday with the intent of having surgery after my 7th chemo instead of having 8 as like you Ruth was finding the tax so hard. However since finishing FEC and starting tax I've felt like things weren't quite right and in last two weeks as if cancer was growing again. Luckily surgeon is great and listened to me and managed to get me straight in for an ultrasound which confirmed cancer had indeed grown again from 2cm to 3cm in 2 weeks. I saw the oncologist today that confirmed chemo was no longer working so I've now finished and they'll get me into surgery on 30th September for my mastectomy.
I'm really happy that I don't have to go through anymore chemo and that they've got me into surgery so quickly as it will only be just over 4 weeks from my last chemo to surgery. I now have 10 days to enjoy in between hospital appointments for CT scans, pre op assessments, lymph node dye and taking my daughter shopping for a Michael kors handbag for doing so well in her A levels.
Hope everyone is well and enjoying life at the moment. X
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Re: Starting chemo May 2014

Ruth, sorry to hear that you've hit the 'wall' with your treatment, it really does sound like your poor body is saying enough is enough.. how many more are you supposed to be having? Listen to your oncologist and weigh up the pro's and con's of continuing ...ultimately it will be your choice. I finished at 5 FEC's and although I'd wished I'd got to the end, after speaking to the oncologist it just didn't make sense to carry on as she said I'd had most of the benifit from it anyway.

I'm still struggling with aches and pains and Hot Flushes at night which are depriving me of sleep, I'm exhausted most of the time. The doctor prescribed Clonidine which is supposed to help reduce the amount of flushes and is not hormone based , it's in the same group of medines as blood pressure tablets.

I also took my shopping list and got free prescriptions for Replens and a huge tub of E45 ready for my radiotherapy next week. 

It is quiet on here , I'm hoping it's because you other ladies are enjoying the sun and getting out and about ??

Linda xxx 

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Re: Starting chemo May 2014

GMC - I still haven't found anything I enjoy drinking ! We have such a selection of squahes here now my hubs said he will open a shop lol xx Ruth xx
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Re: Starting chemo May 2014

Hi Ladies,

 

Wax2014 - Your side effects sound exactly the same as mine ! I also have the ridges over my nails and they have become very brittle. My joints ache too, plus I tire so easily regardless of how much sleep I have had and my head is swimming and I get dizzy spells. Up until now I have got off lightly with side effects other than stomach problems when I was on the FEC. When I went for my 9th Taxol yesterday, because I had so many side effects, the nurses were not happy to proceed and rang the oncologist who suggested I had this week off. I am also seeing him Friday, as the nurses said most people tend to hit a wall on the 9th or 10th weekly Taxol, which is what I have done. It will be interesting to see what he decides as th enurses said sometimes he calls it a day a few sessions earlier. I also have tingling and numb toes and fingers and a sore right foot.I think ym body has gone on strike after constant poking,prodding and drugs for 7 months to date 🙂

 

I too will be having 5 weeks of daily Radio beginning in November at Mount Vernon North London. Its in a very congested area traffic wise and apparently terrible to park. Someone told me if you are a cancer patient visitng daily, they give you tokens for the carpark>? I will look into this as it would save me £80 plus !

 

I hope everypne else is doing ok, there are not many posts here since my last post? xx Ruth xx

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Re: Starting chemo May 2014

Sorry to hear about your redundancy. I took voluntary redundancy last year so i could go traveling, i really didnt like my job so was glad to get paid to leave when i was on the verge of walking out anyway. Did you like your job?
If you have had a payout over £16000 you can only get very basic esa but good news is you get it automatically with a cancer diagnosis so you dont have to have any assesments done just needto get it signed by a clinician.
My feet and hand are sore and peelng and loads of hard skin on feet.
Ive got my taste back apart from not liking water whichi used to drink loads off now need something fruity soon the vimto.
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Re: Starting chemo May 2014

Hello Ladies,

 

Just catching up with all your posts, hope no one is too grumpy today Smiley Happy I am 7 weeks post Chemo now and feel like an old woman ! I have aching bones and my nails too are very brittle with what look like moon shaped ridges across them, hope this doen't mean that they will come off? Seems like the side effects go on for some time after the treatment has stopped. I went for my planning meeting yesterday at Coventry ready to begin Radio on 24th , we clocked the miles at 38 each way and took roughly 45 minutes to get there. My appointment was at 2.00pm and I was back in the car by 2.15pm ! A very long way to go for such a short process and I have to do this daily for 5 weeks ; I also got my tatoo's , I did ask for a butterfly and a dolphin but just got dots !!Smiley LOLIt did 'smart' somewhat though ...

I've had my redundancy notice, another kick in the face is that they are making me take all my accured holiday during my notice period so they don't have to pay me.. I have checked and they can ! .. luckily it's worked out ok as when the radiographer handed my start appointment it was for the 24th and my last day at work is on the 23rd !!! So good timeing in the end;  although I could do with the cash !

Next step is to sign on for ESA and I'm planning to take a break , if money holds out until the new year. I don't think I'm in the right frame of mind to start looking for another job, I really couldn't face an interview etc with no hair. 

It is growing back although very grey but so soft, Jemma said I reminded her of Roxy - (we had a grey guinea Pig !!)

 

Enjoy the sunshine and for those still in the grips of chemo and it's SE's I'm sending a huge hug, it does (slowly) get better....xxxxxxxx

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Re: Starting chemo May 2014

Hi Ruth

It's difficult to drink enough when everything tastes foul isn't it? I will try to up my intake before appt tomorrow in case of probs with my portocath too!

As I've had such painful fingertips I've rubbed Bio oil into them for weeks now but sadly doesn't seem to have made a difference. I now have a toenail hanging on by a thread and I have a foam sleeve on it to protect it from snagging all the time. I think It's only a matter of time before a fingernail goes the same way - aaah !

Hope the tummy improves soon,

Best wishes, Gill

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Re: Starting chemo May 2014

Hello Ladies,

 

I hope everyone is ok and we are allowed to be grumpy 🙂 I know I sound thick but what does SE stand for?

 

I had my 8th Taxol today, four remaining now. They struggled to get bloods today via my portacath and rapped my knuckles for being dehydrated again. Curiously, my hair has started growing back and I am still having the cold cap each week.I havent had my hair cut since May.

 

I ve had an upset tum for past 2 days again, not sure whats causing it.

 

GMC - the nail thing sounds nasty, mine have become very brittle,have you tried rubbing a cream on them?

 

xx Ruth xx

 

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Re: Starting chemo May 2014

Good Morning Ladies - lovely sunny day which is always cheerful.

Sheba, sorry to hear you've had an overnight hospital stay but sounds like you've recovered well. Great news re your scan results and the reassurance from the RT team.

Jj1981,your BC nurse sounds brilliant. All we need at times is some straight talking and explanations as I don't know about you but my mind goes into overdrive and can blow things up way out of proportion. can't help it at the time though. At least now you've got a few weeks with some of the worries taken away and can recover further before your op.

Sheryl, sorry I got confused re your appts/surgery. I am very easily confused these days - blaming chemo but prob age! Good luck for your next appt and hope you hear everything you want to hear. I have appt tomorrow with consultant/surgeon to discuss the further surgery.

Zonda- you sounded in a really positive frame of mind . Hope all went well with your son's knee op.

I'm on day 12 followingmy very last chemo and still have no taste buds or energy. The SE have been quite severe this time and my feet are still really painful and the skin is peeling like mad. My fingertips are numb but the nails are really sore and look like they may well come off.

Ruth and Linda- hope you are both as well as can be and enjoying a bit of an Indian Summer this week.

All the best to everyone, Gill X

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Re: Starting chemo May 2014

Hi everyone

just caulght up with everyones news it seems a lot of us are feeling grumpy and fed up with all the treatment etc it certainly takes its toll and just seems never ending. I finished my last chemo on 22 Aug. and the SE's weren't quite as bad as last time but I have just had my first stay overnight in hospital with a mild infection which really depressed me as you see so much suffering there and I felt guiltyf for moaning when so many people are in much worse pain and situations

On a good point I had a ct scan prior to radio therapy last week and it was all clear the staff at radio therapy were brilliant explaining things and really put my mind at rest regarding the reasons for so much preventative treatment. I felt really good for a few hours but it doesn't take long for the doubts to return I think I need almost constant reassurance that things will be ok and of course nobody can say that.

HOpe everyone has a good day to day.x

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Re: Starting chemo May 2014

Bcn rang this morning at 9am very apologetic. She said i could go in and see consultant today but she managed to answer some of my concerns so i was ok. She said op is penciled in 1st week oct. she said nothig scary will happen at appt i will have a scan but thats purely out of interest to see how chemo worked as having bilateral mx anyway. Luckily mum has managed to change day off. Bcn also discussed some recon info with me so i. Abit clearer she seems to think i can have immediate recon aswell which is reassuring. She is on holiday next week so cant sit in app but she said dont make any decisions and he will phone me following week to discuss. I feel mch better after speaking to her. She also said she was going yo go back to cinsultant andtell him what we had just discussed so i didnt have to repeat it.
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Re: Starting chemo May 2014

Jenni forgot to say have you read the booklet you can download on the site called 'your operation and recovery'. It's really good and tells you what to expet and also has a list of questions that you may want to ask at your appointment.
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Re: Starting chemo May 2014

Jenni this sounds horrendous. They are obviously overrun but it doesn't excuse the lack of information you've had.
My own experience has been totally different. I had an infection after the biopsy so ended up in hospital lots before chemo started and saw lots of consultants then. I moaned to my BCN and she came back to me saying she'd got one of the consultants to take me under his wing. He then set up a meeting after my 2nd chemo and again just before my last chemo. My oncologist is querying whether she'll do the 8th chemo and asked if the surgeon will see me sooner and I got an appointment for next Tuesday. Like you've said they usually operate 3 to 6 weeks after chemo depending on your blood levels as they want to do the surgery as soon as your levels are back up. If I were you I would prepare in your head that you'll be having surgery in the next couple of weeks.
My husband came with me for the first appointment and I needed him for support as it didn't go as planned but this time I'm going on my own as I know what's happening and it's really just the surgeon checking me over. You should have the BCN in the appointment that can give you support and make sure you write down all your questions before you go. Have you got a friend that can go with you? X
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Re: Starting chemo May 2014

Anyone who had chemo before surgery can you help me. I finished chemo on 26th aug. i havent seen breast consultant since dx in april where he said i would have chemo then a lumpetomy. When i started chemo oncologist said consultant was going to give mx as i may have a heridary gene which means it will keep coming back. Ihave sinced been confirmed i am positive for f53 which means i do not have a cancer supresser so at high risk of reoccurance.
Oncologist said to me at july pre chemo meet that consultant should contact me very soon with apot to discuss surgery and he wrote to him 29th july i have a copy of the letter asking him to send me appt and arrange scans etc.
I have heard nothing so contact bcn last week who gave me appt for tuesday. I have received a letter today sayi g appt has been rearranged for a week later.im getting so stressed and anxious already and now have to wait a week longer. This means i will be three weeks post chemo and was told surgery is normally 4-6 weeks so does that mean i could be having surgery withonly a weeks notice.my mum had taken tue off to come with me and we just had argument that she wont take another day off as cant affrd to so i have togo on on my own to discuss surgery. How can they keep me hanging onlike this s anyone else experiencing this or have you had plenty of notice of surgery. Imgoing to rin g up monday to speak to bcn as fuming and upset now.
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Re: Starting chemo May 2014

Gill think my post may have been confusing. I'm seeing the surgeon on 16/9 but haven't got a date yet for surgery. Oncologist was talking about stopping after chemo 7 but the way I feel I really don't want to do it unless she agrees to do another FEC instead of doxetaxol. I feel like I've aged so much since starting doxetaxol and I understand what you mean about the stairs, it's like facing Everest every time I'm at the bottom of them. Glad to hear the helpline was useful, I've read through some of their booklets they have and will make sure I reread them before my appointment with surgeon and oncologist. X