April 2018 Chemo Starters

[Christine Rim]

Hi Euby. Yes i was diagnosed at 54 and was having hot flushes. Chemo stopped the periods and i thought that would be it but they still started again. Bodies are weird things and very unpredictable. I now have to have zoladex injections in the hope they will shut of my ovaries so i can take letrozole.

Hope you are feeling a bit more comfortable Michelle.

[Euby]

Hi Michelle

It was great to swim again, It really highlighted to me how much bone and joint paint I am in. It felt so good to stretch out and not be in pain, I felt so light! I was advised to avoid swimming though until my skin healed (I risked it for a biscuit though - I could not resist the Jacuzi).

Sorry to hear about your skin Michelle and that I have not been on for a wee bit. I was never given gel just zerobase cream to pop on, so I do not think I am much help on that front. Though at the Beatson I was advised that they have nurses on hand for you to drop in and get them to check out your skin, was told no appointment was needed just to ask at the reception. I am hoping you had that support too? How are you getting on now?

A small update re the skin progression for your expectations really, my skin as well as peeling has become discoloured looks dirty rather than tanned. Can see quite a severe line where the old skin has peeled off and the slightly pinker skin was peeking through. The skin has stopped peeling but it is almost like a watermark of discoloured skin around. It is a little unsightly but I am assuming over time this will fade. Has anyone else had experience with this?

In other news......My period has arrived, aged 40 at diagnosis, last perod just after first FEC-T Chemo, last Chemo 19th July, started oral chemo Capecitabine on the 20th of November! I had been expecting a forced menopuase, as per the medical advice and been having all the hot flushes but there is no denying it, it has arrived. So good news for my bone health overall I guess. I do not think I will complain about not having a period again.

Sending you hugs and healing for your skin, x

Euby

[Michelle21]

Unfortunately the skin on the underside of my breast is still raw and sore and my under arm is sore now too. ☹️ In the plus side the skin on the top side is feeling much better now, the itching has stopped. I’m going back to the rads dept tom to try and get something else to help or at least some more gel and dressings.
Euby your mini break sounds very relaxing and your bhoona very tasty. Sounds like you are doing well at increasing your veg intake.
Hope everyone else is doing ok and getting ready for Christmas x

[Euby]

Hi Dorabel!

Hoping the blisters and skin is beginning to recover for you now Michelle.

My skin has darkened and started peeling away with healthy new skin underneath so although it looks worse the pain is diminishing. though I am still not wearing a bra atm. I hope this will be you soon Michelle, x

I was kidnapped by my mum for a mini break and had lots of relaxation, some naps, a little walking and lots of eating out! It was just lovley, beginning to feel like I need to be more active again!

In other news, made a bhoona from scratch, reducing all of the onions and tomatoes to make a gravy. It which tasted really yummy and added in lots of additional veg to increase my veg count further. Felt just like a take away but as I only used some spray oil and then water to prevent it sticking to the pan feel like I am getting all the taste in a healthy way!!

Hope everything is going well for everyone on here, x

Euby

[Dorabel]

I’m so sorry, Michelle, that you are having a hard time with the effects of radiotherapy on your skin.  Those blisters must be very painful.  I hope the gel eventually works.

Hi Euby, hope the chemo has gone ok this week.  Is your skin getting any better now?  

[Michelle21]

Hi Euby
Good news that the new regime is going to be easier for you. Although like you say, most are!
I hope you have had a nice break away with your mum, it’s so cold today did you go somewhere warm?
Unfortunately my skin is still getting worse with new blisters everyday. I have some gel and dressings but I’m fed up with it now. I really need to learn some patience! X

[Euby]

Hi Michelle

Not a runner at, preference is walking, swimming and dancing! But going to start small with Yoga and Tai Chi and then build from there. Once my fittness improves I might think about running.

I agree, I think we just need to take the plunge and call ourselves cured in one respect.

Got the new drugs it is going to be a much easier regime than FEC-T, most things are though!

my Mum is whisking me away for a little treat so looking forward to that. Hope your SE have now peaked and are beginning to improve.

Euby, x

[Michelle21]

Hi Euby
Good luck with starting chemo again on Monday, I hope that goes ok for you with the minimal amount of SE’s. I hope the laryngitis clears up soon too, I recently had a virus and it wiped me out. At least now I don’t feel as tired as I did 2 weeks ago! Having said that I’ve just woken up from a nap on the sofa whilst watching the rugby!
Good to hear your skin is healing well, mine has started to blister so is a little bit stingy now, because it is under my breast I’m hoping it doesn’t get infected.
I’m impressed that you are trying to get your veg upnto 10 a day, it’s jot easy is it? I am generally a healthy eater although probably eat too much sweet stuff and couldn’t honestly say I get my F & V quota every day. None of the doctors or nurses have offered up any lifestyle advice but although I’m not over weight I noticed my oncologistbis tiny and asked if I tried to increase my muscle:fat ratio would I reduce my oestrogen levels and she said it would only make a tiny difference. Do you run at all? I like to do half marathons and ran one two weeks before I was diagnosed and I think this really helped to reduce my SE’s. I have signed up to do that same half marathon in March so once my skin has healed I will start training again. If you don’t run but are keen to start I have heard the couch to 5k is a good program and parkrun is a great free event held in parks around the country every Saturday morning at 9am. My sister in law started running when she turned 50 and was quite over weight, she’s lost loads and has ran a half marathon recently. Runing is also good to build bone density.
It is difficult to come to terms with whether we are ‘cured’ or not. I like to think I am cured and no longer have cancer even though no one can say that for sure. I think everyone is different and we need to tell ourselves whatever gets us through. I find it strange when I read about ‘survival’ rates it sounds so dramatic, but I guess as you say that’s just how it’s measured.
As I said I hope you stay well on Monday and the weeks that follow. Let us know how it goes x

[Euby]

Ooo also Oncologist advised that she would be surprised if I did not still have bone and joint pain at this time so feel quite positive about that. Neuropathy can take up to 2 years to improve ....eek, but most likely patients start to see an improvement 3 - 6 months after!

I have enrolled in a Live Active initative we have locally to get more active. Also looking to start weight bearing excercise to help mitigate Osteoporosis onset. Onccologist advised that they will wait till 12 months after my chemo before considering me Menopausal and take things from there but that as I am realy focusing on healthier eating and excersise I am doing the most adventagous thing already. However she suggested I do take VIT D as a suppliment, so will do. I am not huge fan of suppliments but she advised this is the one we struggle to get from our diet the most so giving that a go.

Has anyone else received lifestyle guidence from their team at all?

[Euby]

Can you tell I am trying to increase my fruit and veg to 10 day too! Mixed suscess so far!

I have managed to avoid most processed meats, and probably reduced meat and chicken consumption to 3 times a week, but feel I have been processed carbing out rather than managing the whole veg instead.....keeping on with it though.

I have a bout of laringitus from nowhere currently - need to stop talking so much!. My skin has started to peel from the radiotherpy (underarms and also under breast - I had a spot of Psoris there which seemed to break down) but there is healthy skin underneath so it seems all good to me! The pain and tenderness is reducing already from the skin, so have my fingers crossed for you that it will be similar.

How are you finding things Michelle, how is your fatigue and are you finding that your skin reaction is still progressing? .

Oncology appointment was ok. Got my bloods done there and I start chemo on Monday hopefully. In the appointment I asked a few questions but did not learn anything more than I had already found out for myself. I had seen a post where someone had said they had only 1 in 10 cancer cells left alive so asked if there was any info like that on me. I alreadyknew I had a partial response and the measures for that and was advised pathology wise tumor inspection reveled that over 50% of the tumor was necortic but nothing more specic than that. I asked about chances of recurrance and was advised that they do not measure this as such, just the survivbility rate in 5 years time using the Predict model and as I had neo adjuvant treatement this data was not capturered. I had already found predict on my own so as long as measured my staging correclty I have an idea of the figures relating to that. It has brought into focus what I knew already that we are never really considered "cancer free" even "remission" is not deemed that. Might seem a bit doom and gloom however it was something I was wrangling with as OH kept saying remember you no longer have cancer (after the surgery) and I had niggle but no one has said that to me claearly. It is sometimes a challange to brace that idea. I am not pessimistic just being very literal. Logically I know I have had curative treatement and chances are good at least over 80% of 5 year surviability however we all feel and have worries and anxiety and feel this will be with us for quite some time.

Best thing about my oncollogy appointment was in the waiting room I met another lovely lady with her little baby who I had seen near the beginning of my cancer journey looking so well and with lots of hair. I found out she was also TN and is on the treatement I am due for. She had a parital response and asked for the treatement (as a nurse - she knew to ask). She explained the side effects were very minimal for her so that is great news for me, I did not realise but I think that had been weighing on me a great deal as I felt very upbeat and relieved. Trying not to worry about the fact that I was automatticaly offered the treatement that she had to ask for and what that means but going to focus on the positives instead.

I think I have been too much socliasing this week and should probably try and slow down a little but so determined to get my activity up.....been far too sedentary for far too long (including before the diagnosis) and really want to do my bit to fight and improve my chances.

[Michelle21]

Thanks Euby and love your food ideas! How did your oncology appointment go? X

[Euby]

Yay on ringing the bell!

Congratulations on being finished this part of your journey Michelle.

2 easy quick additions for your 10 a day

1 glass of fresh juice (150ml)

2 tablespoons of raisins (add to breakfast ceral/porridge or desert)

Some other inspriation that may work for you (depends on your taste)

• Have a small 1/2 bowl of soup as a starter in your daily meals
• Your fav Side Salad is great in summer months
• try making a homemade "colslaw"
• Load up on those pickeld onions, beetroot, saurcrout with hot meals.
• Add lentils to any mince dish you make as this counts as veg as well, (spag ball, cottage pie)
• Add Chickpeas or your fav beans to stews, chillies and currys
• I love fruit and reserve this for eating as snacks throughout the day, however there is nothing quite like a nice fruit salad either for breakfast or desert!

Hope there may be something new in this to inspire you,

Euby, x

[Michelle21]

Thanks Christine, that makes sense, I’ll have a read of their site. We are all supposed to eat 9 fruit and veg anyway but as it is enough of a struggle to get the nation to eat 5 a day the general consensus is that 9 would seem too unachievable!
I had my last radiotherapy today and rang the bell afterwards. Another thing ticked off! I start Tamoxifen tomorrow let’s see how that goes! X

[Christine Rim]

Sorry that was so ridiculous bad. I was in a hurry, no glasses on and using my phone.

Should have read... The diet info came from the World Cancer Research Fund.

I am trying to see what i can and can't eat to make my diet more healthy. Not allowed vegetable oil or sunflower oil so i have invested in an olive oil spray and a coconut oil spray to see how that does. Not allowed margarine but i am allowed butter but not great big chunks. Need lots of fruit and veg. I was told 9 portions a day which should be 3 fruit and 6 veg and a total of 30 different ones in a week. Now that is a challenge...   

[Michelle21]

Thanks Christine, I think I have decifered your code! 😂

[Christine Rim]

Sorry i am using my phone. Lots typo

[Christine Rim]

The dirt ifo came ftom tbe world cancer tesearch funf. Have a look at the website but that is all cancers.

[Michelle21]

Christine your day at Haven sounds great, I wish we had one nearby. I’m really interested in the diet they recommend as I have been trying to research a post cancer diet but it is difficult finding reliable source. All I seemed to have turned up is reduce if not cut out animal produce. Where did Haven get their research from donyou know? If they gave you any info I’d love to see it when we meet up if that’s possible. Or if there are any websites that they gave you? No sugar, oil or alcohol does sound very restrictive I know exactly what you mean we still have to live!

I had a horrible rad session yesterday, they couldn’t line me up so I must of been lying there with my arm up for almost half an hour. It was painful but also I felt so undignified lying there with my boobs out being poked and prodded, and so vulnerable and out of control. To top it off tears started streaming down my face and I felt embarrassed as I got up and left.
Today is the last one, hopefully it will go much more smoothly that yesterday. I have a couple of friends who have been so supportive through all of this coming to ring the bell with me. My husband is away at the moment so that will probably be the extent of my celebrations! X

[Christine Rim]

Hi everyone. Just spent the day at a Haven breast cancer centre learning about their services and how nutrition effects breast cancer. Very informative and a lovely group of ladies with similar experiences to chat with. The nutrition guidelines were based on research not funded by any food companies so totally reliable but very restrictive. No sugar, no alcohol and severe restrictions on oils. I will try to follow most of the advise but i need to live so will not follow it all. I have a one on one booked for friday to see what i need in the way if help.

Shattered but lots of information to absorb.


Hope you are well enough to celebrate after your last radiotherapy tomorrow Michelle. Great milestone.
X

[Euby]

Hi Michelle

Thank you for your kind thoughts will let you know how I get on.

Had a little look at May thread JaqB has particpated in the ROSCO Trial which is why the chemo was split into two sessions. I beleive the purpose of the trail is to try and find out if they can find any links between tumor types and response to the two types of chemo in case they only need to treat with one.

However noticed that another lady had TNBC and she received a different Chemo regime altogether from me. I beleive I may have been a little unlucky in timing as I beleive the NICE guidelines may have updated at some point through this year and I may be one of the last sets of patients with TNBC to receive FEC-T rather than a regime that includes the Capecitabine in the first place. It is one of the things I will be asking my lovely oncologist about tomorrow.

Yay for last Radiotherpy treatement *rings the bell* time to celebrate I think!

Euby, x

[Michelle21]

Hi Euby, thanks for sharing your story, it sounds like it has been cathartic for you to do so too which is a bonus. I think a diagnosis affects everyone differently and it can take different lengths of time to come to terms with various aspects. I remember my mum asking me a couple of weeks after if I’d come to terms with it now and I said I would never come to terms with it. In some ways this is true I still find the whole thing surreal and wonder how it happened but on the whole I guess like everyone else I’m just getting on with it.
Sorry to hear you are still struggling with stiff joints. I’m pretty sure there are a few on here that also suffered with that SE but it is not a SE that I experienced. Again neuropathy is definitely experienced by a few here including me. I didn’t actually notice mine until I had finished chemo. I wouldn’t say it is painful but most noticeable in the mornings.
That must have been a blow to hear you are having to go through chemo again. I think I am right in saying JacqB on May chemo thread has had chemo, surgery and then having chemo again, although not oral chemo. Is the oral chemo as harsh as the infusions? I think taking it one step at a time sounds like a good plan.
I hope tomorrow’s appointment goes well, let me know how you get on. I have my final radiotherapy tomorrow which is not a moment too soon! Right I’m off to the pharmacy now to pick up yet more drugs to put into my body! X

[Euby]

(WARNING LONG POST - Must have needed to my journey out there into the ethos).

Hi Michelle

Good to know what the options may be If I need them, beleive I already have hydrocortisoe cream for another skin condition...lol

I have not yet finished my treatement, I have an appointment with Oncologist wed who will check my radiotherpy reaction and also discuss next steps with me.

So I was diagnosed with TNBC in March which is grade 3, no staging was offered by my medical team, The Tumor was around 4 - 4.5 cm and I had no node involvement. My treatement plans was 6 cycles of FEC-T, followed by lumptomy follwed my radiotherpy.

I found the FEC and Docetaxel affected me qute differently.

Major symptoms of FEC

Nausa

Alopecia

Fatigue

Forced Menopause

Yeast infection Oral

Constepation

I would have one bad week and noticably recover over that week to an almost normal state within 7 days. It was not pleasent and although I felt quite clearly ill as a result of the treatment it also felt managable in some ways.

Major syptoms of Docetaxel

Fatigue

Bone & Joint Pain

Hand/Foot Syndrom (blistering of soles of feet)

Chemo Brain

Neropathy

Forced Menopause

Yeast Infection Oral

Constepation

Nail damage (in the end lost 2 of my big nails - not sure if they grow back again?)

Low mood

I would have a delayed response to the Doxcetal where it would really not start to impact me until 2 days and I found that it would take at least 10 days before the SE started to ease and was only getting back to normal in time for the next cycle to start. I felt quite clearly ill as a result of the treatment and not so managable in many ways. I would describe the experience as turning into a cat, sleeping, waking and eating and then sleeping, waking and eating. TIme seems to travel on by quite quickly.

My Feelings on the total ecperience to date

I felt an immediate response in my tumor to the FEC treatement but "felt" that there was little response to the Docetaxel treatements. Over time I started to get breast pain and "felt" as if the tumor was getting larger again, this could all easily be inflamation and also anxiety etc. I found the first Docetaxel to be quite impactful, the 2nd to be less so but still severe and the third one was the worst and I almost feel like I have not recovered from that one (19th of August 2018)

Current most noticable SE

I am still in significant pain within my joints and muscles,

Still struggle with getting up and down, moving around or standing for long perods at a time (though it is improving generally but slowly).

I have neuropathy,

Menopausal symptoms,

Chemo brain and low attention span

Low mood or lack of motivation on occasion.

I feel my SE are probably quite typicl of most people but outlined them as I was finding it reassuring to here see the journeys of others and it helped me to normalise what I was experiencing.

My lumpectomy has came and went, removed 31mm tumor with clear margins and without many complications so far and I feel as if it is not too invasive a procedure for me luckily - (probably due to no Lypmh node involvement). Ironically I do however feel like my lump is still with me as the void was filled by fluid that will  be abosrbed by the body as it heals over time.

Ongoing Treatement

As TNBC there are no homonal therpies or treatments. I unfortunately did not have a complete pathologcal response to the FEC-T and as the onccologist put it "Did not respond as well as hoped" to the Chemotherpy so have been advised I have to a further 8 cycles of oral chemo drug Capecitabine.....which kind of knocked the stuffing from me as a further 6 months of chemo does not fill me with joyful anticipation.

Overall I remain positive and just trying to relax and practice self care taking it all one step at a time. Been advised that it can take up to 12 months for the SE to diminish from Chemo so just keeping on kepping on :P. I have yet to meet or come across another indivdual in a similar situation as me or who has taken the Adjuvant Capecitabine for TNBC after receiving Neo Adjuvant course first. Sometimes I think that might be the hardest part.

I really should start getting my questions ready for meeting on Wednesday.....this is inspiring me! Thank you for asking about my journey I really do feel sometimes I need prompting in some ways!

Hope everyone is having a good week and coping with their SE and sending you all some love and luck, xxx

[Michelle21]

Hi Euby
It’s good to hear that the comments here have helped you a little.
Thanks for your input re rads. That is exactly the same for me my armpit hurts and under the breast. I had a review yesterday and they gave me hydrocortisone cream to help but I am not allowed to put that under the breast, presumably because the skin is thinner there.
Have you finished treatment now? How did you find hemo and do you have any lasting SE’s? X

[Euby]

Hello everyone

I wanted to say I am also an April 2018 Chemo started and although I did not sign up to the forum till recently just reading what everyone was sharing helped me with my journey a great deal.

In re to Michelle I am only recenlty finished my Radiotherpy on the 05/11/2018 and had 19 treatements. I have found that the fatigue did not increase much at all however my skin reaction is still developing over time. I had noticed almost no skin reaction until about session 14, it is worse in my armpit of all places and also under my breast, bascially in all of the flextures where the skin tends to be a bit thinner.

The medical team focus on if the skin is broken or not and was advised I can drop in any time and just ask to see a nurse in relation to my skin and they will check it over and dress it is need be.

[Michelle21]

Yes we put a lot of trust in the doctors don’t we? Thanks Dorabel x

[Dorabel]

It’s good not to have to know. I’m having zoledronic acid at 6-month intervals to discourage osteoporosis & bone cancer (hope I don’t get that!).  Just have to accept what the medics tell me is needed.  Know exactly what you mean by those tubes.  Only 2 more rads - way to go!  Hope you have the most minimal side effects possible.

[Michelle21]

Sorry Dorabel I don’t know what a zoledronic acid infusion is, will you have to have it regularly or is it a one off? I have herceptin every 3 weeks but fortunately I get to have that in a tenovus lorry so I don’t have any association with chemo there. I wouldn’t like to be treated in the chemo ward again but I suppose I would have to get used to it. Just seeing those tubes of red makes me feel queasy!
Just had 18th rad only 2 to go!! Hooray! X

[Dorabel]

That sounds really grim for you, Linda.  I was wondering if the effects of the anaesthetic are part of your sickness, even this long after surgery.

Do hope you are able to enjoy Christmas, Michelle, after daily radiotherapy - you’re right about this bringing home the enormity of what has happened.  My moment of this came when I was having a zoledronic acid infusion post-chemo but in the chemo ward.  Hated going back there and felt so sorry for the woman next to me because I recognised the chemo she was having and knew she was almost certainly about to have a bad time.

[Linda Corinne]

No I finished chemo 9.5 weeks ago. I think it's related to the bad taste and dry throat though. I had my op 3 weeks ago nearly. x

[Michelle21]

Oh dear Linda that doesn’t sound very nice at all. Are you having any treatment at the moment? Hope you feel better soon. X

[Linda Corinne]

Michelle I was sick today. I think it catches up with you when you stop maybe. The saltiness is better but still got a bad taste. I may call the chemo hotline again as they said to let them know if not getting better. Not been sick before all through treatment. Have taken anti sickness medication. x

[Michelle21]

Gosh Christine 30 sessions does seem a lot and it must have been so tough going through all of this and having a 4 year old. I did buy some aloe Vera but everyone seemed to be saying to use emollient or diprabase, which is what I have used. My skin is prickly and I’m trying hard not to touch and have switched to wearing a vest top under my clothes instead of a bra. Not long to go now. X

[Christine Rim]

Hi Michelle. You must be counting it down to the end now.  My experience was nearly 20 years ago now and i was only 34 so coped with radiotherapy pretty well. I am sure technology has changed over the years and the process improved. I had skin care advice at the hospital before i started and was reviewed during treatment. The advise i had was to apply Aloe Vera but it had to be the 100% pure variety. I used it all the way through and was lucky not to have any skin problems at all. From what i have seen on here that appears to be unusual in the present day. May be it was a lower dose then as i had 30 treatments and now it has been reduced significantly. I worked while going through treatment and had appointments around 4.30 in the afternoon so i could then get back to pick my then 4 year old up from nursery, so I don't think the tiredness was that significant or I have forgotten that bit. Anyway that was a long time ago so things must have changed now.

All the best and I hope your skin doesn't get too uncomfortable.

xxx 

[Michelle21]

Thanks Fiona and Dorabel
I am almost finished with rads now, 17/20. My skin started to get sore after about the 14th session and has got a little worse each day, I was wondering if the skin gets worse afterwards because it is sore and prickly now but I can cope with it but I wouldn’t like it to get much worse. Hopefully I will turn the corner on tiredness at the beginning of December and can enjoy Christmas. I really haven’t enjoyed rads at all, going in every day has made me think about the enormity of it all and had me feeling like a patient again.
Roll on Wednesday which is my last session!
Hope every elsenis good. X

[Dorabel]

Hi Michelle

I had my last radiotherapy towards the end of September and was quite tired for a couple of weeks afterwards but, compared with the tiredness of chemo, this was nowhere near as bad.  I think, though, that there is a lot of individual variation.  The area treated is still visibly affected and, for about three weeks my nipple was sore.  This soreness has gone now.

I hope it all goes well for you when your radiotherapy starts. 

[MrsPardaeva]

Hi Michelle. I was also told that it was cumulative with the peak being 10days after your last session which was pretty much the case for me. I was really lucky with my skin though I was fastidious with moisturising with double base 3 times a day but My skin was tender though throughout and for a few weeks after.
I'd say I felt the effects for up to 4 weeks after I finished.
How are you getting on with it? X

[Michelle21]

A quick question for those that have done radiotherapy already. I know they say that it is cumulative didnyou notice that you felt more tired after it finished? If so how long did that last? Also did your skin continue to feel worse or did that start to get better once you finished?
Thanks
Michelle x

[Michelle21]

That’s a great way to look at it!

[Dorabel]

I was 8/8 oestrogen & advised to be on exemestane for at least 10 years, which encourages me to think that maybe I’m expected to survive for quite a while.

[Michelle21]

Yes that is the test Fiona, how oestrogen recrptive the cancer is. I think that 3/8 is oestrogen -ve so 4/8 is weakly positive but onc still thinks it is worth giving it a go. Ironically I’m not having flushes at the moment which is a first for a couple of years! Here’s hoping for as few a SE’s as poss for us all! X

[MrsPardaeva]

Ah that makes sense now Christine, thanks.
I was 8/8 oestrogen and 7/8 progesterone receptor hence their strong insistence for me too.

[Christine Rim]

I didnt know what people were talking about with regard to oestrogen either until i saw the header on my oncologists letter saying ER7. I assume this is the number as i need letrozole and zoladex which oncologist insists on. I need to wait until my second zoladex before i start letrozole but again it has side effects of more aches. Just need to hope for the best.

Hope the wait isnt too long Gigi. What a day...

[MrsPardaeva]

Hi Michelle, what was the test that you scored 4/8? Was it based on how oestrogen +ve the cancer is?
I really didn't want to have the tamoxifen but 2 oncologists and my therapist have all said they feel strongly that it's necessary but I didn't see any test results which I think would helpy accept.
I haven't started yet as was waiting for the rheumatologist to see what's going on with my joints but she's now said I can get started... I'm dreading it tbh. Not sure I can take more joint pain!

Gigi.. Ive just seen your message... That's terrible, I hope your partner is OK?

Christine, I lost all my hair and have taken biotin since the day I stopped chemo and I'm delighted to report that my hair is really so much thicker than before. Can't say for certain it's the biotin but I'm not stopping it just yet.

For the neuropathy I'm finding gabapentin helping but lm also still dropping things not really stopping it. I walked 5miles yesterday and today but very Slowly .. Patience is key!! Xx

[Michelle21]

Oh no Gygi that sounds awful, I hope he is sorted quickly and you can get home for a good nights rest. X

[Gygi]

Ha ha no such luck Michelle. Currently in A and E. Partner cut himself badly at work, been hospital and stitched but bleeding too much, daughter throwing up and dizzy. I'm the well one! Designated driver and the one going to work tomorrow! Roll on the weekend. Was hoping to start Park run Sat as a walk but we will see!

[Michelle21]

Good evening all! I expect you are in bed now Gygi I know I would if I was up that early! I also have a slight bit of neuropathy. My hands are fine I can just feel a slight numbness if I push my thumb to a couple of my finger tips. My toes are worse, although not painful and not stopping me doing anything thank goodness. I’m not getting any aches from herceptin either which I’m pleased about. I am walking everyday still and even got back to running before rads but got a cough still and feeling tired so having a couple of weeks off. How are you getting on with parkrun Gygi?
I had an appt with my onc today to talk about Tamoxifen. My score was only 4/8 so borderline but she thinks it’s worth giving it a go and seeing how I get on with it. I’m not keen on taking something for 5 years but I’m not brave enough not to take it!
Funny a few of you are saying hair in various places is coming back thicker, I think my eyebrows have come bavknlooking slightly better than before or maybe I’m just really pleased to see them and more appreciative now! My hair is pretty thick but because I cold capped I have some long bits and some short spikey bits! I’m having it cut every 6 weeks to get it all to catch up.
I hope it’s rated dry fornyour walk Christine x

[Christine Rim]

Good Morning

My neuropathy has been in my feet rather than my hands and each time i have a herceptin injection it becomes more noticable. it does fade over the three weeks between but comes back. The oncologist denies this is a side effect.

My hands are effected by the joint pains from herceptin as well as my shoulders and hips. I was adviced to keep moving but have not given any other advise. I also had my first Zoladex injection for 17 years so i am not sure what side effects i will get from that. Yesterday i bought a suppliment of glucosamine, omega 3 and a few vitamins just to see if they help. Willing to try anything to get some proper pain free sleeps. I am trying to get back to the gym but i can't do alot yet. I have an appointment with the plastic surgeon today and have a few questions on movement and gym work after the reconstruction. I haven't gone back to using weights yet at all and am very wary of my arms/chest muscles. I do like doing a few squats and do a good stretch routine at the end.

I haven't worn much mascara over the last year but i have got back to using it a few times recently and the lashes are definitely improving. Although i didn't lose all of my hair on my head as i scalp cooled, it is still coming out and is thinner than i would like. Keep trying different shampoos and conditioners to give a bit of volume. Any recommendations would be appreciated. I have tried a non permanent hair colour too which has brightened it up a bit.

Well i need to check what tubes are running and if i need to walk the last bit. As long as the rain stays off at that point i don't mind the 25 minute walk from Earls Court. Just need to go the right way.

Have a good day.

xxx   

[Dorabel]

It’s already a long day, then, Gigi.  I hope the painkillers have worked on your achy legs.  Things I was told by oncology medics, like “pins and needles” and achy joints”, sound so innocuous but the reality is very hard to bear. The effort involved in simply getting about is exhausting.  I hope your day goes well.

Thick eyelashes (not yet very long) are a consolation.  They’ve never been this good.  Hair on top is still only babyfuzz but at least it’s there and growing.  Got to find something to enjoy.

I’m grateful for all the posts about neuropathy.  It sounds as though everyone who had the same chemo is still having pins and needles, so I need to be a bit more patient.  I get furious with myself when I keep dropping things.

I’ve just had an NHS survey to fill in.  It asks if the long-term effects of treatment were explained to me.  Probably they were but in the horrible fog of hospital visits and treatment regimes most of what was said to me is a blank.

Maybe I’ll get an eyelash curler. x

[Gygi]

Oh and hair growing with a vengeance! Eyelashes lovely but oh no embarrassingly had to trim nostril hair. It was soooooo long. Hush!

[Gygi]

Hi everyone hope no one is up as early as me. Getting ready for work. Partner starts early this week so up with him. Cup of tea in bed right now in the dark. Fiona and Dorabel I finished chemo on the 16th July and the neuropathy in my fingers is gradually wearing off although yesterday when I read your post I was much more aware of it. I guess I've gotten used to the tingling. I don't think mine is too bad it is in my right more than my left hand and I don't drop stuff as much any more. My problem is my legs. Due to having the port out and letting it heal and then a stinking cold for the last 2 weeks not been swimming yet but hoping that will help my legs. Trying to push myself a bit so back out walking the dog although as he is a very energetic husky it's quite hard. Also did a little bit of gardening (pruning) yesterday (my day off) I work 4 days a week thank goodness! Today I'm feeling it so will take painkillers all day and I've started taking some time release vitamins to help they were recommended on a hr2 site and it is helping. Very very stiff but not excruciating pain like before. It was mentioned on a forum that going back to iv rather than injection might help but with all the blood clot/port complications I'm pretty sure that's not an option so I'm trying to "walk back to fitness" I know Michelle walked a lot through chemo. 1 Doc says it's aftermath of chemo another it's herceptin. It is just exhausting living with such dodgy legs. Yesterday I walked the dog (not far) lucky I have a park next door. Then had to rest a few hours. Then I gardened for 35 mins. Then that was me done in. Got shopping delivered as I can't carry any weight. Felt like everything was taking so long and I'm rubbish. That feeling didn't last too long. Gave myself a" be patient talk and enjoy resting it's part of the process. " This morning my achy legs mean my gardening muscles have been reactivated lol. Everyday a little bit more or the same ....whatever I can handle. Patience....do what I can and enjoy sitting around with the family chilling. I will crawl slowly up to the bus stop and go to work. The journey is my walking to fitness today. Long post alert (should have said that at the start) have a good day everyone. Very wet here. Take care Gigi x