By the way, today is my cycle 6 chemo day, such a surprise, heart palpitation has been included in the nurse follow up side effects/reaction pre-check list. They said that heart palpitation is a serious problem and if too high it may cause stroke. They are instructed if palpitation happens during infusion, they may stop the infusion immediately and apply medicine (they sort of mentioned IV high dose steroid). Infusion will then resume later on the same day or the next day.
My oncologist tends to believe I had reacted to Taxol and not stress out. when my pulse rate was raised up to 17x, I was sitting in the chemo chair, reading magazines and was quite relaxing
I am on Taxol/Pujerta/Hepceptin,
In cycle 4, I build up tingling fingers on top of electrical feeling fingers. I almost took my eyeball out instead of my contact lens. My onco suggested a10% decrease, she was afraid it may become permanent. I immediately turn her down. Even 1% improvement in survival rate, I still won't give up.
today is my 6th round infusion, I have no tingling fingers in cycle 5 and only some electrical feeling. Every time i take off my contact lens I will make sure it wont come out with my cornea though 1 or 2 times almost. Had an apointment with my replacement onco.(my previous left) 3 days ago, I was told they usually won't change the dosage amount and especially Taxol is the main drugI I won't give up unless my onco make the brake. .......MelMel
I'm sorry to hear you have cancer cells in your lymph nodes and that your experience with chemo wasn't great. I think this highlights how everyone is different and explains why some people say they prefer to live with the illness, than the side effects of the treatments. I respect everyone's decisions because no two people are the same and we all react differently to drugs and meds.
It is good news that you have trust in your team-that is most important.
Sending you healing thoughts...
After having a lumpectomy with clear boundaries I was told of cancer cells in my lymph nodes positive to Herceptin. I have undergone 4 chemo sessions and 3 weeks of radiotherapy. I am having 3 weekly herceptin inections, am on Letrozole for 10 years and started 6 monthly Zometa treatments for next 3 years. I cannot complain about my NHS treatments and the staff are so supportive and caring.
However, I am not sure if i knew before chemo what I was going to go through, I would have undertaken it. I found it gruelling, after each session I ended up in hospital and felt wretched throughout. Others I have spoken with haven't had many side effects and coped better.
You just don't know though how things will turn out. I am just hoping that by following my Oncologist's advice that it is all worthwhile. The treatments are very expensive for the NHS so they must be sure that they are worthwhile and save lives.
Sometimes you feel like you are between a rock and a hard place. Sometimes you cry . at other times you try to put a brave face on. Talk of cancer and all the medical appointments tend to take over, so I have tried to keep up seeing friends and try to be "normal" as much as possible.
Hi Sally-that is so reassuring. It's amazing how different women respond differently to the same meds but also how many different meds there are-different combinations, permutations, etc. etc.
I just hope that if I need chemo I'm put on a combination that don't make me feel dreadfully ill.
I'm so pleased to hear your experience has been +.
La la-OMG-it sounds like you'd do well opening your own chemist/pharmacy! 😂 Thanks so much for the tips re-the anti emetics. I don't have any children but to give you a sense of how intolerant I am to sickness....I have had three surgeries for fibroids, and though my anaesthetist was amazing and added to his list "antiemetic" for my recovery (I am usually sick the 1st night in hospital)-the nurses like to start you off on "tablets" which did NOTHING for my nausea, and at my last surgery, I remember having my head over the toilet bowl, with my arm reached out as if to say to the nurse "inject me NOW". It seems only the injections of the antiemetics (the strongest type/intravenously) work for me. This is why I'm already developing a fear of this chemo but to hear that only 2 of your gals were sick is reassuring. I love my food so will have no problem using that as a coping mechanism, provided I have an appetite and can keep the food down:).
You've been a real help to me re-my chemo concerns and have provided me (and the forum) with so much helpful info-personal experience cannot be knocked and tends to mean more than what the research says "should" happen.
I'll definitely PM you nearer the time and if I do learn that I need chemo-I know that if I was to PM you now, it will go in one ear and out the other and I'd have forgotten all you've said by the time I have the chemo (if I do find I need it).
I've added you to my Friends list-I won't forget you:). I anticipate my surgery won't be before end of October so it is likely I won't know whether I need chemo till around that time.
I'll keep you posted, and thanks hugely again! Your contribution has been invaluable to me.
Sally-you're another one of my heros:). Thanks for contributing and sharing your experience. It's reassuring to know that some women don't feel sick! It's also reassuring to know you've been able to work throughout.
Only time will tell what I will need-I have yet to have surgery-not for another 4-6 weeks I imagine but I will check back in here (this thread has been so helpful) for when I find out my chemo fate. By then no doubt you will be all done-I'm so happy for you that you're coping this week with it.
Sending warm wishes and lots of hugs and wishing you a speedy end to your treatment...
Just to add: this is such a useful thread-I hope everyone is OK with it being revived since it's start date a few years back.
First of all, congratulations on being 2 1/2 years clear. I am so very happy for you-that's wonderful.
Thank you for such a detailed and thoughtful reply. I've bookmarked it so that I can return to it later once I know what I'll be doing treatment wise:). You speak a lot of sense.
I'm so sorry to hear that you got a different size boob than you had expected and are now awaiting revision surgery; what a pain. I'm also sorry to hear you had to come to London for your surgery but it sounds like you were pleased with the experience? (as much as one can be) and other than the cup size shocker!
So much of what you are saying rings bells for me because I've only met this consultant twice but on both days he asked "what's your cup size".
He also echoed what you wrote in that a Mx with immediate reconstruction will offer me the best aesthetic outcome.
I *am* a little worried re-chemo if I need it because I don't cope with nausea well at all but it seems you felt little nausea? or do you just cope paritcularly well with it?
I admire the fact that you worked through your chemo-I am self employed so would love to be able to do that if I need chemo, and if I can. When you say "ask if you can do this"-are you referring to having Pacitaxel over 12 weeks? I'm very *unfamiliar* with all the chemo drug names. It sounds like you're saying that FEC-T in 4 cycles with Docetaxol causes more side effects, etc?
I'm at the "collect as much information as you can" stage-this is still very much a learning process for me and your experience and messages are arming me with knowledge.
Thank you so much, and again, I am so very happy you are so far down the line-you're another one of my heros!
Thanks very much La-la for replying! So to be clear: it sounds like it is more a cost exercise, in that if there are no positive nodes-they might do the test just to be sure-but if there *are* positive nodes-they wouldn't do the test because chemo would be indicated and it would be a waste of £££ to do the test? This is my understanding anyways.
Can I ask: when you say you have days when you wish you had gone for lumpectomy over mastectomy...why is that? Have you had reconstruction, or did you opt not to? I'm just wondering why you sometimes wish you hadn't had a mastecomy. I'm opting for a mastecomy (just my L boob)-right one thankfully not affected...apparently, the distortion (if I were to have a lumpectomy) would be significant given the size of my boob relative to the size of my cancer-smaller boob, larger area of cancer:). I'm OK with the mastectomy decision, especially if it means I can avoid radio which he said it would mean, but I'm awfully confused over why I will be able to avoid radio, but possibly not chemo. I don't understand the difference between the two and it's the chemo I would *love* to avoid. Hence my Q. re-the oncotype test etc:).
I hope you have come out the other end of the chemo? i.e., I hope you're all done?
I am replying to this 2015 message only because it addresses one of the Q's I had for my consultant today-I will post a more "full/comprehensive" message on another thread but this was my post-MRI appointment and it was as I expected so no real surprises...I need a mastecomy on my L boob:)
My Q. for him was: can I have the oncotype type Dx test before deciding if I have chemo (if chemo is indicated-which he said it could be)-at the moment, it isn't-I have Grade 2 IDC which he is confident he can treat with mastectomy but when I asked the Q. re-oncotype Dx testing he said if there are no positive nodes-yes, I can have the test, but if there *are* positive nodes, I can't have the test on the NHS cause they won't fund it but I can have it tested privately.
I'm just trying to get my head around what this means-is it because if there are no positive nodes, they will do the test to be sure that I *don't* need chemo, whereas if there are positive nodes, they won't do the test because a positive node would indicate have the chemo and they would see it as a waste of £££ to do the test?
I just want to know-when the time comes, that the benefits for chemo outweigh the risks and I understand that this oncotype Dx test can help one make that decision.
If anyone can shed some light on what he meant by "if there are no positive nodes-yes, you can have the test, but if there *are* positive nodes, the NHS won't fund the test".
Thanks a million!
I'm wondering if user "JCJ" or any other nay-sayers to chemo are still alive 2/3 years after their stage 3 detections. Last year, my mother, diagnosed with stage 3 made the mistake of saying No to chemo, and this year, she's no more to see Christmas lights. Last 3 months of her life went in extreme agony and she repented her decision on several occasions. We, the family, felt the same. We should have quit our jobs and stayed with her, if that would have pursuaded her to go for chemo. Dying of an aggressive cancer is far, far worse than any negative effects of chemo. At least, those side-effects can be managed, and they are, as the name suggests, just "sideline inconveniences" compared to cancer pains and how cancer eats you up inside, alive. In my mother's case, it had spread in her spine, making it impossible to lie down and get a decent sleep. She had to sit in a chair, uncomfortably for all her last 3 months, managing to sleep at best 2 hours at a stretch. Her movements became more and more difficult by day, and she could barely stand up for 1 minute at most. One minute soon reduced to 40,20,10 seconds, making palliative care more and more difficult. Imagine the nurse having to change diapers, give sponge-bath in 10 seconds! It had also spread into her liver affecting her apettite. A month before her death she could eat a bowl of something, which quickly became half-bowl, down to 2 spoons, and then nothing except coconut water. You could see her getting weaker and weaker by day. An alive, cheerful, talkative person reduced to pale, weak patient who could barely speak a sentence at stretch. Aggressive cancer can spread fast. By the time you're done reading this paragraph, an there could be hundreds of more canver cells in your body by now, each ready to replicate and produce a hundred more.
I hope anyone reading this, if/when faced with a difficult decision of having to undergo chemo, will choose chemo. I'm not affilitated to any hospital or a pharma company and have absolutely nothing to gain from writing this. I'd just ask everyone to have a bit more trust in his/her doctor and follow their advice. When in doubt, do go for a second opinion, but don't risk your life on some new/old herb or any quack-therapy.
Is the test available if grade 3 er- and her2-, 7cm because invaded a cyst that it was on the side of? It kept getting bigger each time they drained it and the cncer cells were found in the fliud only when removed not from draining.
Maybe this new research can bring some insightful information:
"New Study Finds Not All Breast Cancer Patients Need Chemo"
For what it's worth: I had to face the same decision 3 years ago. (See earlier post) WLE. SNB - clear.28mm Grade 3. ER+. Her-. It was a horrible decision to make, but the fact I wasn't told I definitely needed it, combined with the information that it wouldn't be a guarantee of stopping the cancer coming back, gave me the confidence to refuse chemo.
Everyone has to do what's right for them. Only you have to live with your decision, but despite having spent the last 3 months being investigated for liver mets (now confirmed as gallstones and not BC related) AT NO POINT DID I REGRET SAYING "NO" and getting on with my life, because I knew that even after chemo, I could have been in the same situation!
I talked to the BBC helpline, Macmillan helpline and anyone else who'd listen. Nobody could advise me, but talking and asking questions helped me make my own decision and live with it.
Good luck whatever you decide.
I made exactly the same choice as you for exactly the same reason. Chemo is not something to be taken lightly. I had a 15cm her+ stage 1a grade 3 and im 50 and according to the prediction and adjuvant websites chemo may ony improve my odds by 8 to 12 percent. However, upon researching the vital staistics of the particular chemo treatments I found the risks to be higher that the possible benefits.
Now if I had stats that were different like a 50 percent chance Il die with out and in improves my odds by 40 percent then I would probably take the risk.
Be careful to check what info the Dr enters on the Adjuvant website and the prognois button allows them to make your outcome look better or worse.
I enjoyed reading your thoughts JCJ. As they were very much like my own.