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December 2016 Starters

Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - so so sorry to read that about your Mum. Running girl has put it perfectly - we really are all here for you and sending your Mum, you and your Dad loads of love and hugs. It's so hard to keep a brave face on for your family, so you can be totally honest on here. xxx

Running girl 53
Member

Re: December 2016 Starters

Snail888 thats a fab idea about the running group. Dont know whether i've mentioned it (chemo brain) but i am currently reading "Run for your life" by Jenny Baker who ran to all her chemo treatments. A good read that you will relate to. Highly recommend it.
Running girl 53
Member

Re: December 2016 Starters

Cookiepuss so sorry to hear about your mom. We are all here for you. One of the precious things about this forum is that you can get it off your chest as everyone of us understands each others vulnerability. Sending you a big hug. Xx
Snail888
Member

Re: December 2016 Starters

I'm thinking of setting up a virtual running group for ladies after bc. Thought I'd call it recovery run. It is one of the things I desperately miss and am looking forward to getting good out there. Worked out I have 4 weeks left with chemo next week and chemo 6 3 weeks after that! Then trainers on and off we go 🙂
Cookie puss I can empathise with how you are feeling having gone through similar with my dad. I hope you can make you way through it especially as you are in treatment too xx
Cookiepuss
Member

Re: December 2016 Starters

RunningGirl - thanks for all the feedback on what to expect from the T.  I too got the impression from my oncologist and chemo nurse that the bone pain is one of the main side effects and that I would be more tired.  Thank you also for the details re your surgery which is very helpful.  I will be doing more research once I have an idea of what the surgeon has in mind but any information is useful.

 

Also condolences again regarding your sister.  It must be very difficult for you and your family having to go through it all again.  Lovely photo of the two of you X

 

Evie - thanks for offering to share info too; I have an appointment with the breast cancer surgeon on Tuesday where I may get some more details and will let you know what he says although I suspect he will be non-committal until I have finished chemo and had another scan.

 

Jacquie - I get the Fluconazole and Nystin and advised that it's on the "must take" list of drugs for me.  It does seem to work as my mouth has stayed fairly ulcer free.

 

Unfortunately, a bit of an emotional weekend for me so I'm feeling quite down.  Just before I got diagnosed with BC my Mum had an emergency operation to remove 2 large tumours from her bowel and it was discovered that she had secondary liver cancer.  She started chemo just before Christmas but was one of the few people who had a terrible reaction and none of the meds seemed to work either and she ended up in hospital; as a result she made a decision not to have any more chemo.  We were hoping that her age meant that the growth of the tumours would slow down but the latest scan has shown it has spread elsewhere in her body and the prognosis is very poor.  I'm trying to stay positive in front of both my Mum and Dad but it is so bloody hard knowing that she hasn't got long left. 

 

It doesn't help that they live a four hour drive away so I am trying to visit as often as I can between my treatments.

 

Sorry, didn't want to put a downer on things but if I get it out here then I know everyone will understand and I can try and keep a brave face in real life.

 

 

Running girl 53
Member

Re: December 2016 Starters

Jacqui. Sorry to hear about your brother, losing a sibling is something you dont expect until old age. Its rough. Xxx Hope you are feeling better tomorrow with more energy.
Evie-s hope you are feeling brighter today. Glad my post helped. Hope your toes feeling more comfortable today and you feel rested. Hope you have a better night tonight. Xx
Fiddlercrab you never know knee pain may not come back. Would be nice if that was a nice side effect of all this and for you too Snail888.
My running is getting slower, quite out of breath this weekend while running and felt like an old lady! But i'm not moaning cos no matter how slow i still managed a run yesterday and this morning. The down side is that i feel very tired this afternoon but at least i should sleep well. Some friends at my running club are doing the Liverpool rock and roll half marathon in May and i'm going as cheerleader so a nice girls weekend in Liverpool to look forward to. Shall feel a little jealous watching them all trotting off but the apres run will be a blast.
Hope all of you having a good day and here's to a good week for us all. Xxx
Jacquie48
Member

Re: December 2016 Starters

Thanks Evie. Could I ask, why do you start antibiotics and fluconazole? I have fluconazole in case I get thrush symptoms but have been told not to take it unless I get symptoms. The loratidine is anti histamine. In the US it is routinely used to reduce bone pain from the injections. I asked if I could take it and whilst the oncologist didn't know much about it he said I could take it. I think Snail may take it also. Fingers crossed! Xx
Evie-S
Community Champion

Re: December 2016 Starters

Hi Jacquie - good luck with the injection and getting over the effects of T. My taste tends to go for just over a week but seems to come back slowly once I start the antibiotics and Fluconazole on day 8. I needed stronger tastes the first week otherwise everything tended to taste like plastic. I thought I had seen all the T effects, but the sore skin between my toes was a new one this cycle. I have just ordered some very attractive toe socks - the type that look like gloves for feet! My toes were rubbing so badly against each other yesterday that I could hardly walk around the house. I hope the new socks might sort the problem. You have all kinds of drugs that I didn't have. I hope you will be fine and won't get any nausea, thankfully that's one thing I didn't get with T.

 

So sorry to hear about your brother too. He would be proud of the way you are fighting this.

 

Love to everyone.

Evie xx

Jacquie48
Member

Re: December 2016 Starters

Hi ladies, hope everyone is ok today. I'm preparing to give myself my injection this evening and will take loratidine a couple of hours before. I'm nervous but sure I'll be fine once I've done one. I don't feel too bad. I'm very tired which I think may be a post steroid slump. Not really got any nausea, hope that continues, but do have bad heartburn and indigestion. I have taken my omeprazole but unfortunately I can't take extra antacids while I'm taking the phosphate supplements. My taste is already nearly gone, and I've had an upset stomach this morning but overall currently not too bad.
Snail, thanks for info re Vit D. Will raise at next appt. Sorry you and Fidflercrab both have arthritis issues, interesting that chemo improves them!

Evie, I'm frantically moisturising in the hopes of preventing sore skin but who knows if it will work. Been careful to do between my toes!

Running girl thanks for sharing the chat with the nurse. The picture really touched me too. I have lost a brother, though not to cancer, and treasure every memory.

Any suggestions for getting through my T welcome. Keep telling myself only two left now, plus recovery from the last. 8 weeks or so? I was going to go for a walk today but I'm just too tired. On sofa with blanket and feline friends. OH has gone to see a friend, which I'm pleased about as this is hard for our loved ones and I want him to have a break from me and all my issues.

Jacquie xxx
fiddlercrab
Member

Re: December 2016 Starters

Hi Snail. Yes, I've been seeing rheumatology since before all *this* started, it's a very slow process. The oncologist looked at my bloods and it looks like the rheumatoid factor is slightly elevated. He said that if it was rheumatoid arthritis then most likely it would vanish during chemo, and it did. I have one finger that gets a bit stiff towards the end of each cycle, but that's it now. I had an ultrasound of my hands just before Christmas which surprise surprise showed absolutely nothing. 

Snail888
Member

Re: December 2016 Starters

Fiddler crab, my knee pain also cleaners up for 19 days every cycle. I have arthritis behind the knee cap. Bit of a Google and it seems cyclophosphamide is used to treat arthritis so maybe knees will be good after all this:)
Evie-S
Community Champion

Re: December 2016 Starters

Jacquie - hope you are feeling better today. You are so right, this drug keeps throwing up new surprises. I too have now got a flare up of eczema on my hands and sore toe skin too, and that has really knocked me today.

 

Jojo - sorry to hear about your feet. But glad to hear about you having a good day. It does cheer me up to read about others having a good day - kind of inspiration to keep going. So keep the good news coming ladies.

 

Apologies for having a moan and so many posts. I kept reading new posts and wanting to reply and too tired to make notes today. 

 

xxx

fiddlercrab
Member

Re: December 2016 Starters

Wow Running girl, that's a long post. I too found the story of your sister inspirational, so I will raise a virtual glass tonight.

 

I am jealous of your running, I had to give up around Easter due to knee pain. Knee pain which has totally vanished on chemo. I keep thinking I will start again once chemo is over, then remembering that the knee pain will probably come back. Sad face.

 

Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - thanks for offering to share info when we get closer to surgery. I'll let you know what happens after my meeting this week. Like you I have small boobs so I think that's why he's talking about a mastectomy. I agree with you, I just want to get through the chemo before I have to thinkabout anything else. xx

Evie-S
Community Champion

Re: December 2016 Starters

Running girl - thank you for that amazing post. It was my turn to have a meltdown this morning - but reading that post really helped.

 

I didn't know about your sister - so very sorry to hear that. She looks and sounds like a wonderful, inspirational lady. I will also raise a glass to her today and I'm sending you especially big hugs.

 

Glad to hear your nurse was so positive and "the patients' voice". You are so right about this forum and the December group, it is an enormous support.

 

Thank you for sharing your surgery experience - I have a meeting with my surgeon this week and that was really helpful to read. I have been trying to ignore the surgery as I'm scared of that, but reassured to read that it was easier than the chemo. 

 

I thought I knew what T was going to throw at me, but yesterday it threw sore skin between my toes. Didn't sleep well either so feeling rough today.

 

Lots of love to everyone. xxx

Running girl 53
Member

Re: December 2016 Starters

Apologies for the lengthy post! Keyboard diarrhea! Xx
Running girl 53
Member

Re: December 2016 Starters

FB_IMG_1486198793300.jpgHappy Days, Me and Al on holiday. ❤

Running girl 53
Member

Re: December 2016 Starters

Well my meeting with the specialist nurse yesterday was very positive. We talked about the T treatment and she just confirmed mostly what i already knew about the side effects but emphasized the fatigue. She was genuinly encouraging about me still running which i found uplifting as i usually get a cautious reaction. She did say that when the fatigue hits that i must rest, that means no work or driving. She said the nausea shouldn't be as bad (that for me has been the worst bit) but we shall have to wait and see. Keep moisturising nails and keep them painted and she said i will definately want to eat more during t so can expect to gain weight (aaaargh!) I'm hoping though if i dont feel as nauseous i will make healthier choices instead of the usual hangover menu. My arm is feeling much more comfortable now and i'm glad i'm having a hickman line fitted wednesday. She said ir's one of her projects to have them offered to all patients. Given i had phlebitis following my cannula after surgery i should have had it offered to me. That is annoying as i tell all the medical staff about the problem i had ( the phlebitis was caused by a rather uncaring nurse who when i told her the antibiotic they were injecting into the cannula was painful told me it was tough on the veins and not to worry i only had a few more injections to go. The next time i felt like my hand was going to explode and i just sat and cried with the pain at which point another nurse spotted i was upset and went mad when she knew. They moved the cannula and i had no more pain. Phlebitis lasted about 2 weeks but i didn't need antibiotics for it.) I said the whole experience is so tough on patients that we dont need these problems on top of everything else. To which she agreed. We also talked about this forum. She is passionate about it saying what a great support it can be to people and wants to promote it to patients. I said how wonderful this Dec group is and how we have all found it supportive, informative and a safe place to let off steam. I have to say it was the best Onc appointment yet i actually came out of there enthusiastic, energised and more positive. Just sitting there talking about the post treatment time and getting my fitness back etc i saw that little light at the end of the chemo tunnel and it was uplifting! I think she is going to do some great work there, she really made me feel like she was "the patients voice" i think that's great!
Cookiepuss, i have had my surgery. My cancer was invasive lobular cancer. It was 13mm and i opted for mastectomy as i just needed that reassurance that it was all taken away. I was to have a tissue expander fitted at time of surgery but when plastic surgeon examined me he said i was viable for 1st stage reconstruction with an implant. This is because - in my words- i had two spaniel ears! Meaning they could do a skin sparing mastectomy as there was enough skin to cover the implant. Waking up after surgery to look down and see i still had a full cleavage was brilliant. In fact i proudly showed my cleavage to anyone and everyone (whether they wanted to see it or not!) i was just so chuffed with it. Dont get me wrong its not perfect, i dont have a nipple and from the side it looks like a flying saucer (best way i can describe shape) but in my bra it actually looks better than my own boob on the right! I will be having radio after chemo which could damage the implant by causing the tissue to harden around it (capsular constriction) however my plastic surgeon thinks i will be ok as he placed it quite deep under my chest muscle. I should have been able to return to work in mid Nov but results from sentinel node biopsy taken during surgery showed 2 out of 3 nodes had cancer and some cells were on the surface of the nodes so Oncologist wanted axillary node clearance which i had on 26th Oct which delayed my return to work until 12th Dec. Looking back i definately think the chemo is worse than the surgery. I was lucky as hubby had just got a new job and he was put on garden leave for a month as he was moving to a competitor so that worked out well. You will need lots of help and support in the first few weeks. 2 weeks following surgery i was more active and friends started taking me out for walks and coffee and cake ( happy days, i actually had rather a good time of it) i was thankful for the good weather we had in the autumn and made the most of it. Whatever you decide to do just follow surgeon's advice to the letter and you will be fine. Due to the second surgery i still have weird sensations around the site if implant and arm pit but this is down to lymph drainage as it has to establish and different route to drain away and it takes time. Do your arm excercises they give you religiously and you will be amazed with the improvement day by day. If you have any questions just ask me. It all seems so long ago now and i have forgotten some of it. Sleeping sitting up was one thing that got to me a bit but make sure you have plenty of comfy pillows to prop you up. I can still remember the first time i managed to sleep lying down and it was heaven!
Just wanted to say one more thing.
Ladies i'm sure you are all aware it is World Cancer day today. It's a "world " none of us thought we would be in but here we are. As you know my sister Alison passed away from breast cancer 12 months ago. Infact it is 1 year today since her funeral. She was my little sister but she was a very strong lady. She never gave up fighting and she squeezed every bit out of her last 2 years (she never knew she was losing the fight as it took her very quickly in the end and for that we are all grateful). I'm not posting this to bring you all down , i just wanted to share her with you as she was inspirational, brave and doggedly determined! I miss her dreadfully and wish i could tell her that i now really know what she went through. But personally i take strength from her experience, she was very unlucky as her cancer ticked all the boxes for the "worse case scenario " but she handled it all with grace and "just got on with it". She really embraced life and as a family we spent so much time together and had some real fun times, a family girl week in France to celebrate her 50th birthday being a wealth of magical memories and so much laughter. I shall be raising a glass to her tonight and i shall be raising it to all of us too! Have a good day all, hope everyone feeling well. Enjoy your weekend and go have sone fun! Xxxx❤❤
Cookiepuss
Member

Re: December 2016 Starters

On phone so won't post too much but I don't bother using any shampoo or conditioner on my head now as seems no point. However I do moisturise my scalp every day and it seems ok.

Evie - yes I will need surgery after chemo but I haven't started researching it yet as I'm not sure what they are planning. As I have two lumps and small boobs the consultant said I should prepare myself for a mastectomy as it would be difficult to get clear margins.

On the basis of that I guess I will have to decide whether I have reconstruction/implant at the same time or have it done later. I will see what the surgeon recommends but it would be really helpful if we could share any info etc as we approach that part of our treatment. For the moment I'm just concentrating on getting through the chemo.

Running Girl hope you have a nice evening.
Running girl 53
Member

Re: December 2016 Starters

Hi Cookiepuss, thanks for your kind offer of the wig liner. I have bought one but my wig doesn't fit as well when i use it so i'm just perservering with wig when at work or on a night out. Its soon off my head when i get home! I start T next Friday. Had onc appointment today with a specialist nurse who was fantastic. Lots of good advice and detailed info, she was genuinely pleased that i am still running. I told her i had gained a little weight and gone up a size in trousers. She told me not to worry it wilm come off once treatment finished but she has referred me for a 12 wk fitness program to use the cardiac rehabilitation gym free of charge with a tailored program of monitered excercise! How good is that? Got to go now as off for a nice meal with hubby but will post again over weekend with her info about T treatment. Xx
Rooner999
Member

Re: December 2016 Starters

I started using the onicolife drops about 3 weeks before chemo started and my nails are in great condition. But when I start T next week I am going go with the dark polish on its own as I think the drops have done their job; it does take a few weeks to see the benefit of the drops. Going to start using them again as soon as chemo stops as my nails grow so well with it
JoJo45
Member

Re: December 2016 Starters

Hi ladies, sorry to read that some of you are having a tough time, hope you are feeling better soon.  

I too have been confused over the nail issue, I have now cut mine short again and painted nail varnish on, they have lifted slightly, the white nail end seems to come further down the finger and now I've cut them I might have gone shorter than normal.  😳  Hopefully they will hold on.  

Noticed this morning that the skin on my feet was peeling, how can it suddenly go from so soft to that, it's amazing what these drugs do to us.  

 

On a plus I'm having a good day today, went to sort out our mortgage this morning as rate was just running on a variable, have fixed it now for 5 years and saving £100 per month on the payments, which is a nice bonus considering wages now on half pay. Doc has signed me off work until May so far, still have to avoid those pesky patients with bugs 😳.
Popped into work to catch up and drop off sick note, after 2 hours catching up with everyone, finally left. Been shopping and now putting my feet up with a cuppa before teatime. Steroids will wear off soon so just awaiting the flop.
Hopefully side effects won't be as bad this time as consultant reduced the dose, but at least this time I know what to expect. Will just take one day at a time.

Hugs to you all 🤗🤗
xx Jo

Snail888
Member

Re: December 2016 Starters

All sounds a bit pants for you Jacqui. My cold sore responded well to Dettol! As for the phosphates may be liver processing issues or more likely vitamin d deficiency. My mum has had normal vit d for 5 years but a catalogue of health symptoms including anaemia which had not responded to treatment. Begrudgingly her doc out her on 20000 u vit for and 8 weeks later she is the picture of health. We just don't get enough sunshine! Sprays and liquid supplements are the best but of course we have to check everything with out nurses and doctors u till treatment finishes. I was told that if everyone in the country had regular blood tests they would all show up with something weird even if they feel healthy. Suppose it's a good thing we are monitored so closely x
Jacquie48
Member

Re: December 2016 Starters

Hi Andrea, sorry you're feeling rough and hope it doesn't last long. Please ask your chemo unit for help sooner rather than later.
Fiddlercrab thanks for onicolife advice. Will use it alone.

So I've had my first T. All went fine at the hospital. Sort of. The doctor came over to say my haemoglobin is a bit low, probably causing the breathlessness, and if I develop any chest pain or palpitations to ring immediately. She told me my phosphate levels were very low and prescribed some dispersible tablets. The pharmacist also said the levels were very low. Having googled I am still not sure what this means and am wondering if my Vit D is low too as that seems to be a factor with phosphates. I'm not an alcoholic, I don't have COPD or the other apparent risk factors. Anyone else had this?
I showed her my eczema hand. She said my arms were too dry and gave me Diplobase. I also showed her the sore on my nose. She said it's a cold sore. I've never had a cold sore in my life! She said it's just the chemo and gave me Zovirax. Dear heaven this treatment just keeps giving!
I was only given one Domperidone tablet although I asked for stronger anti sickness. By the time I got home I didn't feel great so took an Ondansetron. My mouth has a funny taste already too. I have my injections to start on Sunday. Wish me luck!

Hope everyone is ok xx
Evie-S
Community Champion

Re: December 2016 Starters

Hi Fiddlercrab - Thank you so much for all the advice on nails and surgery, really really helpful. Do let me know which option you go for on nails. Mine hurt a bit today so am in a panic that they may fall off if I don't do something. xx

 

Evie-S
Community Champion

Re: December 2016 Starters

Andreaj - so sorry to hear you are feeling so rough. I felt like that earlier this week, I felt like it would never pass again. Can you remember when you started to feel better with the last sessions? Sure it will pass again - but call the nurses/onc if it's much worse than before. I think most of us don't want to trouble them/cause a fuss, but they may be able to prescribe something to help you. I'm taking that from Jacquie's very sensible advice earlier/yesterday to make sure we all report things early.

 

In the meantime feel free to shout on here or chat if that helps. Be kind to yourself and find something easy to watch/do or just sleep. xx

WMJ
Member

Re: December 2016 Starters

Ooh the thread has been busy, lovely to read through. Lots of us having difficulties at the moment, which I am sorry to read. Thank goodness we have one another to sound of too and offer support. Hope the sessions go well for those who have them today. Jacquie, I too had a small nasty lump, less than 1cm and 6/7 nodes had cancer in them. Interestingly enough this did not show up at all on my ultrasound and a shock to the surgeon and obviously me, hence why I am having chemo. I have to have a node clearance after chemo then radiotheraphy. One day at a time for me, trying not thinking about what comes next, just need to get through the chemo first, cycle 4 for me on the 9th. Evie, yes you have a lot to think about, making decisions is difficult when going through all of this. I found it difficult enough deciding about changing my chemo never mind all you have to decide upon. 

Sorry not made a note of everyone today but wish you all well and a good weekend. 

XX

fiddlercrab
Member

Re: December 2016 Starters

Jacquie & Evie - I have onicolife and was also wondering about how to use it while simultaneously painting my nails a dark colour, when it says to apply to bare nails twice a day. I asked around and people suggested:

Option 1: one or the other. Repeatedly taking the nail polish off in order to apply the drops will probably damage your nails, even if you use acetone free remover. So either rub the drops in or paint them dark.

Option 2: paint them dark and redo weekly, meanwhile rub the drops into the base of your nail/cuticles which is where the nail is forming anyway.

Option 3: use the drops during chemo, then move onto option 2 if your nails look really horrid at the end to hide any discolouration etc.

I still haven't decided!

fiddlercrab
Member

Re: December 2016 Starters

Hi Evie. I am having surgery after as well, and most likely (90% the surgeon said) it will be a mastectomy. Originally they were going for shrinkage and lumpectomy but the MRI scan suggested otherwise, and I had already started chemo by the time the results were in. I also have to consider reconstruction options, but I like the fact I have got plenty of time to consider them. At the moment I am leaning towards an implant, simply because the surgery is simpler and the recovery time is shorter, and I am not left with two wounds to heal. I already have abdominal scaring from an operation as a baby and I don't know whether that will affect things.

Andreaj
Member

Re: December 2016 Starters

Hi all just checking in, had my 3rd fec four days ago fasted before but dont seem to have had such an easy ride this time.

 

Feeling rough, eyes puffy, nausea etc just want to sleep a lot and feeling down and beaten.

 

Last round was so much better than first that I suppose I hoped this time might be the same.  I cut the dex down as I started having dreadful waking nightmares when trying to go to sleep at night had to sleep with the light on seriously nasty stuff and very realistic plus I was jittery and jibbering away like a monkey and that was just with the steroid from the drip and two 2mg doses via pill the day ater.

 

I would like to reply to everyone individually but dont feel up to it ... it seems a long road today and with my next 3 on T to look forward to I feel rotten 

hope you all have a better day X

Evie-S
Community Champion

Re: December 2016 Starters

Jacquie - just 2 more to go after today, that sounds good.

 

I am having surgery at the end of chemo and will be seeing surgeon next week to discuss options. It may be too personal for anyone to discuss - but if anyone feels up to talking about their surgery that would be wonderful. I think I will be having a mastectomy and node clearance - but have to think about reconstruction. All seems too much to get my head around and dreading not being able to do things, including driving, for so long. Thought I could put off thinking about it until later in chemo but no....

xx

Jacquie48
Member

Re: December 2016 Starters

I've had surgery. Lump was small but nasty little thing. 6 of 14 lymph nodes positive hence the chemo. Yes, this will be 4 of 6 and it will pass! Xx
Evie-S
Community Champion

Re: December 2016 Starters

Good to hear you are positive today. Just think, another one done today, closer to the end and you are zapping that lump. Or maybe you have had surgery already?

So sweet of you to offer to mail the company - no worries if you forget, I forget everything. xx

Jacquie48
Member

Re: December 2016 Starters

Evie I've just read the leaflet again. It says to apply to bare nails but doesn't say if you can apply varnish afterwards. When I'm home I'll email them and ask. Do remind me as the chemo brain means it may have gone from the memory in the next 10 minutes😄 I'm hopeless. I'm just getting dressed before lovely neighbour drops me at the hospital. I'm feeling positive today and hope I can stay that way. Xx
Evie-S
Community Champion

Re: December 2016 Starters

Good morning lovely ladies. I make notes and still forget half the things I wanted to say!

 

Jacquie - first of all, thinking of you today and hope T goes well for you. I meant to say I'm glad you liked Anna Bandana, I found them very good. Thanks for the anti nausea drug tips, the shampoo and nail advice. I am going to order some Onicolife. I think someone else may have asked this - but how do you go about putting the Onicolife on as well as painting nails? (Does that make sense?)

 

Rooner - hope you are feeling a bit better today? I am going to look at alpacine shampoo - plan to try everything to make my hair grow back as quickly as possible. Interesting that you are all using shampoo, I had no idea what to use. 

 

Jojo - I also meant to say that I'm glad to hear you are doing well after your 2nd T. Interesting about reducing the dose. Bet you have the cleanest house after the steroids - I never actually got that urge! I want a pink wig too - I thought about it when I went, but got the sensible one. Time for a second I feel. Thanks for your advice on wigs. I hope mine will be easy to wear but I also have scarves. Such a surreal world we are in.

 

Appreciate all the advice everyone has given about steroids - always helps when seeing onc to be armed with info. I appreciate they are the experts, but it's always good to ask questions, especially when other hospitals are doing different things.

 

Fiddlercrab - all the best for next week's T and H. Hope you find something to distract you during the 6 hours. Let us know when you go in and we can chat on here if that helps?

 

Hope everyone has a good day. Hugs, xxx

fiddlercrab
Member

Re: December 2016 Starters

I am starting T + Herceptin next week and also have three days of steroids to take. T can cause allergic reactions (more so than FEC) so I am going to take them but really not looking forward to it. I am having T on Wednesday and H on Thursday and also have to spend 6 hours hanging around at the hospital after the H (but not after the T), which is quite possibly going to be extremely boring. That's if the oncologist actually got round to prescribing it, it wasn't on my records at my last FEC...

Jacquie48
Member

Re: December 2016 Starters

Evie I'm using baby shampoo on my head. When it starts properly coming back am thinking of buying Nioxin to help it along. With the FEC it was just finding the right drugs combo which ended up being ondansetron and cyclizine. Just unlucky. On my third that combination stopped me throwing up and the nausea was reduced but unfortunately had a bad effect on my bowels and I had impacted stools. Hideous and ended up in A and E. I had been taking stuff but again was unlucky and if it happens again I wouldn't wait 5 days to go to A and E. lesson learned! Also have had oral thrush. Although I've felt sorry for myself a few times it has all passed and I'm sure it won't happen to you, I think I just have a more sensitive stomach than I knew. My advise that if you do get sick don't wait. Ring them straight away and they'll help. Each time I have not wanted to be a bother and have made it worse for myself.

I fully intend next birthday (50? No!!!) to be very different 😄

Xxx
JoJo45
Member

Re: December 2016 Starters

Hi Evie, I have two normal wigs plus the pink one.  My wigs felt a bit big once my hair went, but on adjusting the strapping at the back, they fit ok.  I think the small gap above my scalp helps to keep them cooler and they don't itch.  Only I know that they are too big, they look normal to everyone else.  At home I wear hats just because my wigs are long and get tangled when I'm sitting on th sofa.  

Strangely my hair on the head never completely went (well not yet) though I did take it down to a grade 1.  I still shampoo with a tiny amount and still put a towel on my head when I leave the bathroom, my son has questioned this on several occasions, I say it my way of feeling normal.  

My consultant was keen to give me maximum dose of steroids as I have severe allergies so didn't want to risk allergic reaction to th chemo.  

Hugs jo xx

Rooner999
Member

Re: December 2016 Starters

Evie - I still use shampoo to keep everything clean and moisturised. My head isn't bald there is what I call 'prickles' of hair all over but very short. I've been using alpacine shampoo in the hope that it will stimulate hair growth!!
Evie-S
Community Champion

Re: December 2016 Starters

Jacquie - I spent so long writing my post with foggy brain that mine crossed with yours. First of all happy birthday - as you say maybe not your best, but you are well on the way to making the next one the best. 

 

Thanks also for your FEC experiences. Interesting about your hair. I still have eyebrows and lashes and some still on my legs. Would love the eyebrows and lashes to stay but who knows. Exciting that yourhead hair is coming back. I certainly haven't had the nausea with T and hope you won't either. From what I have read it seems FEC is more likely to cause that.

 

Brain really ready for bed now. xx

Evie-S
Community Champion

Re: December 2016 Starters

So much useful info from everyone.

 

First - my experience with T and steroids. I wasn't given any steroid to take the day before T. My first was via IV before the chemo started (think Dex). I then had 4 Dexamethasone tablets (each 2mg) to take at 9pm on day of chemo, then 9am and 9pm the day after. Strange how different hospitals give different doses  - Cookie and JoJo seem to be getting almost double what I had, surely there should be a gold standard? My worst days have been 4 and 5 - general aches, tired and that foggy "I'm ill" feeling. I also had horrible palpitations on those days, which they think is a side effect of the Dex. I was given Lorazepam so that I could at least sleep. After that I go back to some sort of normality, though not quite sure what that is any more. Cookie - lucky you getting access to morphine! You will sail through it.....

 

Agarside - good for you questioning the steroids.

 

Good to hear that you all had relatively mild experiences with FEC - thanks for sharing and reassuring. Agarside - I'm interested in your fasting, I must re-read that article one of you posted about it a while ago. Just not sure I could go without food, even though it does taste like plastic for the first week. Hmm, on second thoughts maybe I could give up plastic food.  I hope you are getting over your cold now.

 

My wig isn't half as much fun as Agarside's or Jojo's and I've only worn it once. Didn't notice til later that it had slipped and looked rather odd, but friends too polite to laugh!! As I used the cold cap for the first 2 chemos I still have some hair, but it's not a good look as it's quite bare on top and some around the edge. Don't even try to imagine. I guess the wig may fit better once the hair has gone. What do you ladies use once all the hair has gone - clearly not shampoo and somehow shower gel seems wrong?

 

Goodnight everyone and big hugs. xx

 

Snail888
Member

Re: December 2016 Starters

I wonder if my dose should be upped as I've put on so much. But them as it's fat and not muscle it won't make much difference! Anna bandana are great and cheap enough to have play with a few items x
Jacquie48
Member

Re: December 2016 Starters

Ps I have now lost over a stone since I started on 2 December and asked them to ensure T dose reduced as it's 12% of my body weight. Can only hope they've told the pharmacy xx
Jacquie48
Member

Re: December 2016 Starters

Hi all. I start T tomorrow. I've taken my first two doses of steroids and also have two lots for tomorrow and two for Saturday. I haven't had major side effects from them, nor did I notice any during FEC steroid time either. My worst days have been after I finished them. That may change as they accumulate over three days of course. The worst bit of steroids for me is actually taking them. I find them difficult to swallow and they're so bitter!
I have been unlucky on FEC and hope very much that T won't be as hard on me. I have loratidine ready to start taking when I start the injections. Hoping to avoid the bone pain. I haven't been told that I'll have to stay longer tomorrow. Yikes! I've been told I'll be out quicker than FEC days. Guess can only trust that they've done this before!

I wanted to thank whoever recommended Anna Bandana. I'm afraid I can't remember now. I've bought a few from there. Comfy and reasonably priced. Can't get on with the wig. Hate it.

Also thanks re the eczema. I've bought some neutrogena. I've never got on with E45. Used to get eczema years ago. I do hope T improves it! The chemo doctor is going to check me over tomorrow re being so breathless, assuming bloods clear.

I've been far more emotional this few weeks and also had a couple of days of wondering if it was all worth it but I'm feeling stronger at the moment and hope to be ok. I'll let you know how it goes.

Anyone starting FEC, I have been sick but many others as you can see have not so I really hope all goes well for you. The strangest thing is that I still have all my body hair except head and down below and nose! I guess it's going to go during T but head hair appears to be making a tiny reappearance. Weird.
I've got onicolife drops to try to protect my nails and have ordered Udderly Smooth for feet to hopefully prevent peeling. Both recommended on a Facebook site I'm on.

Hope you all sleep well (and I too must start making notes so I can reply more fully and try to be more helpful!).
Jacquie (no longer 48 turned 49 last week! A birthday that won't count as one of my best!). Xx
Cookiepuss
Member

Re: December 2016 Starters

Evie - if it's any help I didn't feel too bad with the FEC.  I tended to feel a bit crap (very tired, woozy, chemo brain) on days 5-8 but I think that was caused by the crash after the steroids.  I wasn't sick after FEC and mainly just felt slightly nauseous which I could cope with.  My appetite was fine and mouth ulcers were kept at bay with regular brushing and mouthwash.

 

Fiddlercrab - like Evie I wrote a few notes to remind me of what I want to say/respond to.

 

RunningGirl - I found the more I wear my wig the more comfortable it gets.  It's a bit itchy for the first 10 minutes but seems to settle down after that.  It did give me a headache the first few times I wore it all day but I think it has stretched slightly so has settled to the shape of my head.  You can get a wig liner which is basically like wearing a pop sock on your head (nice!) - this provides an extra layer between your scalp and the wig which may alleviate the itchiness.  I have a spare one if you would like me to send it to you to try - just message me with your address if so.

 

I have to say I have worn the wig quite often now, particularly in the last week as I have been going into work every day.  If I am working from home I tend to just wear a Cozy Cap. 

 

Nonetheless I can't wait for my hair to grow back either.

 

Snail - I noticed it was much lighter at 5pm tonight too.  Spring is on the way!

 

I had my pre-chemo check/chat with the oncologist today.  He ran through the side effects of the T as my first session on that is next Thursday.  He said that the main side effects are severe aches and pains, tingling/numbness in fingers and toes (but if that happens I need to tell them as they will reduce the dose), damage to nails (keep them short and wear dark nail varnish) and fatigue.  The aches and pains usually kick in around days 3-7.  Painkillers are OK to take but I will also get a prescription for morphine just in case!!!!!!!!!!!!!!!!

 

I am having T with Herceptin and Perjeta thrown in for good measure!

 

The steroid dosage has increased dramatically.  I have to take 4 steroid tablets twice a day starting the day before chemo, the day of and the day after (on the FEC it was one tablet 3 times a day for 3 days - yikes that is 24 steroid tablets in 3 days vs 9 previously plus whatever they put through with the chemo).  I am going to be bouncing off the walls and the ceiling with that amount, not to mention having even more of a moon face and am not looking forward to the crash afterwards. 

 

For the first session they have said to be prepared to be at the hospital for a minimum of 6 hours - although it doesn't take that long to administer there is more likely to be an allergic reaction (hence the huge amount of steroids to try and reduce it) and they won't let you go until the are sure that you are OK.  If all goes well then the subsequent cycles are much shorter.

 

Not sure if that is the same for everyone so will be interested to hear if others starting on the T next time round have any conflicting/different information given.

JoJo45
Member

Re: December 2016 Starters

Hi ladies, day 2 of second T and feeling ok so far.  My consultant reduced the dose this time to 80%, apparently this is very common and in trials of the drug it was felt that 80% is just as effective in the end, I was concerned as didn't want to prolong the treatments but still the same amount.  He did talk about increasing my steroids but said he would rather go with the reduced dose. Should hopefully reduce the bone pains and nosebleeds.

Had the injection tonight to ready for the side effects of that.  

In answer to the steroid question, I have to take two doses of 8mg the day before treatment, the day of treatment and the day after, morning and lunchtime (16mg a day).  They are ok for day one, just feel I have loads of energy and buzzing around the house cleaning everything in sight.  They on treatment day I get a hot flush and slightly rounded face.  Sleep is a bit of a problem on the first day, however after my chemo yesterday I slept well last night.  

Been to see my GP again today, just to touch base and get a further sick note, she has signed me off until May 😳 Working in health care not allowed to have patient contact so best to stay away.  Missing work but need to concentrate on getting better.  

Hugs to all you lovely ladies 

🤗🤗 x

Snail888
Member

Re: December 2016 Starters

I think you try without it and go from there. The main use of the steroids is to repress cortisone and in the case of chemo to prevent severe allergic reactions. Dexamethasone is very different to prednisone which a lot of people with auto immune disease get put on for years. I can't really say the steroids affect me much apart from red cheeks and indigestion which pretty.much go within 48 hours. I would not want to be on them long term like my uncle with copd. He has prednisolone every day and the effects are awful. At least we have a choice and if it goes well I may follow you on my last 2 chemo if only to stop the indigestion!
Agarside
Member

Re: December 2016 Starters

Snail888 from what I gather we are expected to take Dex (or equiv) the day before and for 2-3 days after. So far from my reading, the side effects are worse than any benefits, so they will have to show me something really compelling fo me to be even considering taking it.

 

A xx 

Snail888
Member

Re: December 2016 Starters

I'd be interested to know what they say about steroids and t. My dad was dosed for 2 days prior and 2 days after on his regime. Glad to know symptoms are along the same lines as me but I'm supposed to be doing 6 x fec. Also glad (in a nice to know I'm not alone way) that people are still having periods. Of all the things I wish would go away! Seems to go hand in hand with massive amount of fluid retention too. Drunk 4 litres to try and flush some fluid through but not really working at moment. But hey tomorrow we get 4 minutes more daylight too 🙂
Agarside
Member

Re: December 2016 Starters

Hi Evie,

 

I too have been very lucky with FEC.

Days 1-4 like a hangover, I fast as best I can and drink 2 litres of water +++ as I can.  Day 5 is "Big Mac" day.  After this I am fine.  I have been floored by a period and a head cold, exasparated by FEC.  I declined Dex (took alternatives with much less side effects).  No probs with veins, muscle pain but am starting to feel the tiredness and fatigue.

 

I have a wig, but crikey it is uncomfortable and itchy....  Wore it today and had to keep going to loo to take it off and get air to my head lol, guess I will just have to get used to it.  I would go bare, but I still have patches left and it looks horrible, but I do have eye brows and lashes which is good.  

 

I am now reading up on T, and deciding what I will and will not accept to go along with it 🙂

 

A