So glad to read your posts after a quiet patch on the board. Thanks for all the good wishes regarding my radiotherapy. Last zapping tomorrow - can’t believe I’m coming out on the other side of treatment. Radio has been much easier to bear than chemo. Still got neuropathy & hideous nails but convince myself the pain is fading. Very tired, though.
Re. survival rates, I tell myself that the tables for this are a model not an exact account for the individual. Each small percentage adds a bit more hope. It’s enough for now just to have got through the months of horrible treatment.
Completely agree Michelle that as a person you can be that one even if it shows a 99% survival and i wasn't even looking to know the total percentage. Actually i wish i hadn't seen the overall figure. I was just wanted to know what the benefit was from the added drugs i was being offered as i needed to get my head around the extension of the treatment and side effects. In my case it proved a point but i am not sure as a matter of practice i would have wanted to have know the total figure. I have to believe i will survive 10 years and will continue to believe that unless i am told otherwise. I will still plan for retirement and keep myself fit. Reality is we don't know what will happen to us in the future.
Hope you have a bit more energy now.
I think it would be fun to meet up. I wonder if we will look like we imagine each other to look?
I am sure that will be a relief to get the port out. I felt so much better to have mine gone and even better news that you will be able to stop the blood thinners. I only had two weeks of that and my legs were covered in bruises so i have a small idea of what you went through.
The website for the 10 years survival i think was a one available to doctors only and i didn't see the name of it. she did say it was nhs i was surprised at the figures she gave me after entering my specific details. the majority of the survivial in my case was the surgery which amounted to over 60% and then a further 10% for chemo and 10% for letrozole. My tumour was alos very eostrogen positive but i have no figures. There was a few other things too and it took into account death through other unrelated issues. I would think most oncologists could give you figures that relate to you.
I had problems with the first injected herceptin but the following ones seem to have been less so. I do have aches in joints and muscles for the first 48 hours post injestion but these eased off. I still have neuropathy on my feet which also gets worse a few days after each injection then lessens until the next one.
Would love to get away at some point but i am not allowed to fly for a few months post surgery and not really up to it yet. would like to plan something at some point though to forget about this summer.
All the best for your last week of radiotherapy Fiona and Dorabel. We all just need to listen to out bodies at not push things too far too soon.
Good to know how things are going for you. I feel the same about this board. Didnt feel quite the same about the September radiotherapy forum even though I’m now 2/3 of the way through radiotherapy..
Hope all goes well after your surgery. Still early days.
Hi everyone. Thought i would put a quick update on here as i am now post surgery but feel more ofa connection to the ladies on the chemo thread.
Had an appointment with the oncologist this week and asked about the benefits of letrozole and she went through an nhs website and showed me 10 year survival rates for all the treatments. It put everything in perspective and i now know in my situation that i have an addtional survival rate of 9% by taking it. I was surprised at this but realise i need to take it and i am happier now about it. I dod need the infurisons to reduce the chance of bone thinning but they have agreed it can done through my foot as neither arm can be used. It has helped me worry less. Blood test taken to check hormone levels to see if i need ovarian suppression or not but as i had some spotting last week i am predicting estrogen will still be being produced by my ovaries. Additonal hospital visits will be annoying but not much i can do. Herceptin is every 3 weeks and suppression every 4.
Anyway i am recovering from surgery but i am writting a list of questions for the surgeon next week. One is that i don't understand what he did to my belly button. I was expectiong a scar around it as it was repositioned after the DIEP but i don't have one. The belly button is a strange V shape and nothing like my old one even though i thought it was still my old one but moved. What did they do to yours Gygi?
Getting out when i can but still severely restricted as i am not allowed to do much for the first 6 weeks. Only a week and a bit to go to reach that so am hoping i can do some gentel gym work soon.
Hope you are all moving on and feeling recovered from chemo.
Anyone else having problems with this website and access to this thread? I had an email saying Dorabel had posted but link says page not found. when i access the thread via the monthly forums there are no new posts. mabe if i post the other entry will return.
Thanks for this, Christine. Really appreciate having this information, especially as you are rcovering from surgery. I hope the last drain is gone or, at least, not oozing any more.
Letrazole is something I’ll be having to strip out the last oestrogen. Feel my menopause is on an endless loop: first time when I had a total hysterectomy; then when I tried to stop hrt; then when I stopped again after cancer diagnosis and now to be helped along by pills. 😖
Chemo has made me frightened of any new treatment, so I think I’m fussing about radiotherapy for no good reason. It’s helps to be reassured that even the tiredness is probably nothing much after chemo fatigue. I’ve been feeling miffed at the whole cancer treatment and how long it has taken and this cheers me up since it’s only happened when I’m far enough away from the last chemo session to have the energy to feel this way. While I was going through it, just getting on with it was as much as I could do. Thanks for the tip about Aveeno cream, Michelle. I use it as a moisturiser anyway and I’m glad it will be fine after rads.
I hope everyone on this thread is moving on after months of chemo. I won’t miss it!
I know techniques and equipment have changed over the years since i had 6 weeks of radiotherapy but i would say i found the tiredness not to be of any significance. once you have been through the tiredness of chemo the rads are nothing. I was advised to use pure aloe vera only on my skin at that point but that was before current creams were on the market. I am sure they will give you advise on that. I didn't have any major skin problems with it but I know some people do.
I had a plan going forward of letrozole tablets but i don't have the start date yet but this was on the assumption that i would be post menopause as i had all the signs that i was very close to the menopause pre chemo but my body wont give up and i think my periods are starting again. At 54 i am amazed my ovaries wont give up. Worried now that my ovaries may need to be removed as I have heart risks from zoladex as i am on another drug that has similar side effects of heart problems. I will wait and see what the oncologist says on the 11th and ask for reasons as to what the benefits are. In my head, if i have had mastectomies on both sides and so have less than 1 % breast tissue remaining, why do i need drugs to stop more breast cancer? Surely any risk is minimal but i am sure she will have a reason why i need it. Anyone else been in this position? Really not keen on more surgery as well as the planned blancing on the reconstruction either.
This is wonderful news, Michelle. Must be such a relief! Horrible chemo worth it. Just.
Like you, Gygi, I have neuropathy in my fingertips (& toes). I’ll be so glad to wake up one morning without feeling as though my hands are holding nettles. I’m sure swimming will be helpful to you in your recovery. I swam a bit on holiday and felt better for it, even though I got tired very quickly.
Glad you are feeling a bit better, day by day, Christine. Surgery is a huge assault on the body but it sounds as though you are healing well.
Last chemo is a big landmark, Sally. I hope it all goes to plan & the side effects aren’t too bad.
Came home from holiday today & was exhausted. Thought that if I’m this tired & the main effect of radiotherapy is tiredness I’ll be comatose after the first treatment on Monday. Still, it beats turning up for chemo.
Well the end of part one is here......ish. I have my last chemo on the 10 September. ( FecT 8)
And a date for the surgery. 10 October.
I met my surgeon today, so please as she seems really nice. I think I may have many questions but at the moment don't want any answers, .
Hi everyone. Glad to see life is getting more back to normal for everyone as the chemo effects recede.
gygi, i hated the injections and got quite down towards the end, dreading do it. so glad to have finished those and do feel for you. we do what we have to do but don't have to like it. Hope you can stop soon. i have so many bruises on my thighs i am wondering if a clear area will be found for herceptin jab on friday.
I had to change the tape dressings over my scars this morning and hated the idea but luckily it all went well. i was told to take the tape of in the shower and give the area a wash with perfume free soap before reapplying. i took ages easing the tape off but all looked ok except for the area where the last drain was which is still oozing slightly. New tape put on is a bit more patchwork but does what it needs to do. Belly button still not healing but i have no feeling so at least no pain. plan a short walk alone this morning. progressing each day but very slowly.
Michelle all the best for the 13th. Hope that will be the end of the major treatment.
So glad you are recovering well from surgery, Michelle. The exercises will help with straightening your arm, it just takes a while.
Docetaxel seems to be cumulative in its side effects, which could be why the awful taste in my mouth is gone while yours is still there. I had only 3 doses. My nails are in a bad state & my fingers still hurt. However, I’ve been on holiday & that was the best thing I could have done. I’m wearing a wig most of the time as my hair is still only a faint fuzz about 1cm long. The ends are frazzled, probably because the first growth was so damaged by the chemo. Just the fact that it is growing at all cheers me up.
I hope you get good news on the 13th. Fingers crossed for then. xx
Sounds as though there’s still confusion at the hospital, Christine. It’s good that you got some reassurance about the pain. If it’s any help, I had nerve pain down my arm after lymph nodes were removed. That was at the beginning of February. The pain, along with the tingling and numbness has gradually faded and is almost gone now. It has taken ages but I’m very glad it’s happened.
The appointment that was booked should have been a follow up with the consultant but not sure what happened as when we got there it was a dressing change appointment (I already had one booked the following day which i had to cancel). the nurse was very reassuring and said it all looked healthy and was probably nerve and muscle pain. It does still hurt quite a lot and yesterday i sneezed and actually screamed with the pain that shot through my breast. Hopefully it will all die down soon.
I am using a blood thinner (tinzaparin) that makes me very itchy so I am not really sleeping that well. Using one a day allergy tablets i bought over the counter but i am needing to take a second one in the middle of the night or i will scratch my skin off. Anyone else had to do this or had this problem? Only 2 more doses to inject so hoepfully all will clear up after that.
Received a call from the hospital today as a follow up to my complaint and she was very appologetic. I do feel they have taken it to heart and agree i was failed on monday and left alone when suport should have been available.
Now the drain is out it is a lot easier to do things so i am moving around more. i did move strangely last night to get out of a chair when a sharp pain went through my right breast. Seemed to be when i put weight on one hand/arm. it happened again tryint to get out of bed this morning so phoned the hotline to make sure it was ok. They don't think there is a problem as there is no sign of blood or swelling. I have an appointment anyway tomorrow so will check this is ok. Feels a bit tender on the top part of the breast. Can't find anything online that mentions this and it is so difficult to know what is ok and what needs attention. i feel like i panic about everything. Assume i will relax a bit once i get used to what is what.
Oh this is good news, Christine. I hope the inflammation goes now that the drain is gone. After the awful time you had, this must be a relief. It’s not right that you had such a runaround, and at a time of such acute vulnerability. Now that the surgery is done, things will, I hope, get better.
well drain out as apparently the body can start producing additional fluid because the drain is there so the fact it went up is an indicator is had to come out now. The site is inflamed but not infected so all good. So glad it is gone.
Finally got to chat to some one who contacted the consultant and the drain is coming out this afternoon. I think there are concerns about it. Volume last night double the night before and seems the liquid is very red. Need to get to the hospital (one that does have parking thank god) by 2 and will see what happens after that.
also the problem in researching online is that there are so many different sorts of drains. Mine is a small plastic sphere (under vacuum i assume) that is connected to a bag. Once a day i reverse the clips top and bottom so the contents can be squeezed out and into the bag to measure before putting the clips back in palce and replacing the bag with a new clean one. I don't have a big bottle
Thanks everyone. Feeling a bit more up beat today and determined to get answers. I will check out that download Gygi. Guys seem to have better info than the Marsden on there website. When i had my chemo port fitted Guys had really good info that i couldn't find elsewhere.
I did call the hotline again this morning just wanting the answer to the basic question how do i get new bags. The girl seemed to be the sort to get things moving and asked a number of questions no one seemed bothered with yesterday. It feels like she will get me answers but time will tell. The problem with living in a town with a satellite chemo unit of a major hospital is that the main parts of the hospital are some distance away and not easy to travel to with DIEP surgery. My husband is working from home this week but has needed to do so much for me I don't like to have to ask him to transport me to unnecessary places.