Forum Discussion
LMK74
9 years agoMember
Got told today chemo failed
Today I met with my surgeon, I'm booked in for right mastectomy and full node clearance for 15th August. He told me chemo has failed and done nothing. Hearing that had my head spinning. I've just spent six long months being poisoned with toxic shit for nothing. I'm due for my very last chemo next Tuesday and unless my oncologist can give me one good reason why I should do it, they can get f##ked. All I can think of is if for the last six months it's done nothing then where else has it spread in the meantime. I feel so pissed off right now and am in tears. Also he said the risk of lymphedema is high given I'll be having radiation as well. Does this mean you have it for life and permanently have to wear compression sleeve. I was told at the beginning of all this it would be just the sentinel node, but seeing as chemo failed the lot have to go. Screw CANCER, there is just so much to look forward to.
109 Replies
- melclarityMember@viking1 I didn't have a port, it was never offered and my veins weren't great, generally women with Her2 status get ports, because they have an extra year of treatment. Of course you could request it too if you wanted. As i had nodes removed left side, they used my right arm but after the 3rd infusion I developed a blood clot in my arm and severe cording. So they ended up doing the last FEC and 8 Taxol on my left side and I had zero issues at all :) eventhough they say dont use it. My Oncology team disagreed with the view completely.
- ZoffielMember@viking1 I'm getting my port out in a couple of weeks, it's been in for 8 months. It will be a good riddance moment but if I hadn't have had it chemo would have been miserable to the point of undoable. My first chemo 11 years ago wrecked my veins and even though I only had 4 rounds of TC this time just the thought of all that jabbing did my head in.
I'm a bit needle phobic and cannulars make me feel like throwing up, the port fixed that. It was pretty much painless and so much easier on me in every way. Yes, it's more surgery, but for me it was worth it. - LMK74MemberAll mine have been on the forearm. They never use the vain that is used for blood tests. But if you only are limited to one arm then the port might be a better option. Some of the younger nurses have at times tried 4 it 5 times to get cannula in. Depends on the skill of the nurse at the time.
- viking1MemberHmmm my right arm has had the full axillary clearance but my left arm is actually my good blood giving arm...that's if they put the chemo needle in your arm vs your hand?
- LMK74Member@viking1, I didn't have a port and did ok without, but most ladies said they are easier.
- AnonymousNot applicable@viking1 I didn't have a port as my oncologist injected me each time, so I don't really know about them, but @MKitty68 and the other ladies have lots of info about them.
I had cold caps which had to be put on a bit before chemo and left on after chemo. I've spoken to other women who didn't have to spend any longer having chemo, but for me it was an extra 22 hours over 6 months. I was more concerned about my hair than having a mastectomy which seems crazy now. I kept my hair for about 3 months, then lost it, but it started growing back. I continued to use the cold caps even when I'd lost most of my hair and that was painful. My oncologist said it would help with hair regrowth.
All the best with your port. All of the people I know seem to be happy to have had them. I have some scar tissue in my right arm after chemo and can't be injected in my left arm because of lymphoedema, so a port might have been a better idea. x - MKitty68Member@viking1 - i have terrible veins, so I got the port inserted after someone suggesting it. I have only had one round of AC so far, but it definitely seems to be worth the pain to have it done. - it hurt really badly for about 36 hours after, then the pain eased. So if you do get one, insist on some endone or similar as they told me i'd not need it, my cancer care co-ordinator agreed! i just got my GP to prescribe the endone the next day when i went for a dressing change, but i'd had so much trouble sleeping with the pain in my neck that first night.
The port is perfectly safe though, and much more simple i am told by friends who's had one in the past. - viking1MemberDid they work @LucyE? Why did you have an extra 22 hours and did you have a port? The idea of the port scares me but someone said it was good. I envisage it as a flap of skin covering a tube ... and if you go swimming you fill up with water! Funny, at the beginning of 'the cancer journey' (which is not glamping, it's a journey where you have to stay above country town pubs with frightening bed spreads) I was worried about my hair and asked the surgeon. Because it took me a long time to grow it long. Now I wonder if there should be a sign in the waiting room saying 'You have more to worry about than your hair!!!'
- AnonymousNot applicableThanks @viking1 I'll have to have a look at that book. Can totally relate to feeling like a fat beetle lol. The cold caps were ok, but a bit painful and I should have just listened to music and not had the added 22 hours extra in the chemo chair. You'll be an old hand at it all too. x
- viking1Member@LucyE I really love that last sentence of yours! I wondered if the cold caps worked...and last night when I couldn't sleep I read the last section first of Jennifer Saunders Bonkers autobiography. It is where she develops breast cancer...she tries the cold caps but gives up on them. She is very matter of fact about her treatment and continues to work but has spells of being bedridden 'like a fat beetle' lol. Like you she had a reduction on one side and was pretty happy with it. Good luck for your last surgery ... you must be an old hand at the drill now! xx