I have made a decision in consultation with my Onc not to have my final FEC.
Is there anyone out there that, for whatever reason, did not or could not have their final chemo? Interested to hear views.
Lumpectomy on 7/7/10, 12mm clear margins, grade 3, IDC, Node clearance, 1 lymph node affected. Starting Rads on 4th Jan 2011. Then 5 yrs TAM.
Have been so ill with the last two chemo. In fact Chemo #5 was literally in bed for 2 weeks unable to function and horrible nausea etc.
Saw Onc at Chemo #5, told him I was very ill with #4. He said ‘Well if you’re bad with #5…don’t have #6’
What…I didn’t think I had an option!!
Anyway, to cut a long story…was worse with #5. Spoke with him again and got reassurance that not a big risk to not have final chemo. He said most of the work to kill any cancer cells (if there was any there) is done in chemos 1-4. (he talked about outweighing the risk against the benefit)
What do you think? I can still change my mind as it was due on Monday but don’t think I will. Happy that I’m not having it!
Hi Maroulla,
I had a lumpectomy in May, and after 4 sessions of Chemo my Oncologist said that’s enough! I had trouble with my white cell count dropping too far after each Fec, and my haemaglobin went down to only 8 in September, leaving me very pale, breathless and completely lacking in energy, feeling and looking at least 10 years older!. The Oncologist said I neede a blood transfusion, which took place 2 days later, and he said he was happy that the 4 Fecs I had had were enough. I was very relieved, and feel that he knew what was right for me. My bone marrow obviously wasn’t coping well,and I think it would have got worse with more Chemo, so did he.
Anyway, he said the Radiotherapy would be of much greater benefit, and i have finished that now! so far no problems with my skin, but I realise it could still get sore, (I only had my last one 5 days ago), but compared to the Chemo it was a doddle! Am on Arimidex for 5 years now.
It’s your option, as you say, but I was glad my Oncologist took the decision out of my hands!
Take care, and let us know what you decide,
Heather.x
I only had 4 of the planned 6 sessions of FEC because of severe neutropenia (zero neutrophils). I had to have IV antibiotics because of an infection and also had blood transfusions. I had also had a blood clot after the 3rd dose because of PIC line problems.
I then had 6 weeks of rads, a year of Herceptin and then Arimidex (changed to Aromasin because of the side effects). This is over 3 years ago now. I had a grade 3 triple positive 12mm lump, no nodes.
So far I have no regrets about stopping the chemo early…
Thanks Heather although sorry to hear you had a rough time too. I’ve also had two separate blood transfusions and was hospitalised with an infection for 21 days.
We have to trust these medical professionals, don’t we…we have no other choice.
Another who only managed 5! I had FEC T, and had all 3 FEC but due to septicaemia and the fact that triggered an abscess on my gall bladder which exploded causing an emergency removal, I was shattered - in hospital 20 days (2 * 10), multiple blood transfusions, a real mess and only released each time due to me having total allergy to hospitals and losing a lot of weight and making a real fuss (I’d sooner die at home was my reaction!!), bed bound at home, got wheelchaired to chemos 4 & 5… SAy no more - you get the picture. They decided that the risk to my health of having #6 was greater than any likely benefit. It was put to me that the first 2 cycles of FEC and T were the vital ones, and that the third was belt and braces.
I had 3 FEC and then because of complications there was a 2 month delay. The literature indicates Taxotere to have a greater efficacy than Epi for my type of cancer and so given the delay, I opted to move straight on to the Tax when I could get going again.
The hospital didn’t have a view one way or the other, other than to confirm that what I was asking for had some validity, given my particular circumstances. So all in, I had 3 FEC and 4 Tax.
Of course you have an option! All of your treatment is up to you :-).xx
It is personal choice and you have discussed with your Oncologist and he/she will have looked at your particular circumstances.
I was very ill during chemo, I lost a stone and half during the 4 FEC I had as I was so sick and then I had taxotere and had a severe reaction to that and ended up in hospital. I was never given the option of having less chemo only a 25% reduction in amount of taxotere each time. Now I’ve recovered I’m glad that was never discussed with me (I had grade 2 but large tumour and 9 out of 17 nodes involved). That said I spent a huge amount of time in bed during my chemo as I was so weak and it has taken me a long time to get over it (I’m a year on now).
What you want is to be clear in your mind about your decision particularly if you opt not to have more so you’re not thinking when you’ve recovered perhaps i should have done this or that.
take care, Elinda x
Very intersted to hear your stories. I have been nauseous and rough for the whole 21 days between cycles and after FEC no 4 on 10.11.10 became neutropenic and ended up in hospital on IV antibiotics for 10 days, then another week of oral anti bs.
I missed FEC no 5 as I was in hospital and have only just summoned the strength to leave the house 10 days after getting home. I am seeing the onc on Tuesday and really do not want anymore chemo. Reading your posts it seeems that 3 is enough so already had 33% extra!
I also reacted badly to the GSOF injs - seems my body doesn’t want anyone elses white blood cells- so will have to be hospitalised for any further chemo. I have two boys aged 5 and 9 and the thought of trying to sort out childcare for another spell away from them is just too much.
I had a lumpectomy in June with 2 lymph nodes infected and further clearance in July. Grade 1 cancer. Back in August the onc said in 5 or 10 years time patients like me won’t be given chemo and it is the Tamoxifen that will stop the cancer returning. I will remind him of this conversation on Tuesday!
Thanks all for your stories…really helps the likes of myself and Andrea (andifloss) who have some important decisions to make. Much love XXX Maroulla XXX
Hi Andi,
I’m sorry you have had such a horrible time ( far worse than I’ve had). it makes you literally sick of Chemo. We have it when it is advised, because it’s the sensible thing to do, and we are guided by our Oncologists throughout, so as you said, talk to your’s on Tuesday and find out his current views on your situation. My Oncologist showed me a graph on his computer, at our first meeting, and said that Chemo gives us an extra 4% “Insurance” against a return of “IT”, ( is that ALL, for such harsh side effects??!), and he was happy that I had managed to have the 4 sessions, putting more faith in the surgery I had, the Radiotherapy and the Arimidex.SO, have a chat with yours and I hope all goes well for you, Andi, whatever you decide.
Take care, hope you feel better now?
Heather.xx
Hi Maroulla - Sorry you’ve had such a rotten time.
I personally had all the chemos but 8 years ago a friend of mine refused #6 because everytime she had the chemo her mx scar opened up and she’s absolutely fine.
My ONC has advised me not to have Rads as he feels the risks outweigh the benefits. I have been really anxious about this as I wanted everything thrown at it but feel I have to trust his advice.
Heather- Thanks for your post. I will obviously be guided by the onc but feel I have more “evidence” of people who have not had the whole 9 yards so to speak.He will need to provide me with hard core stats to persuade me it’s the way to go!!
Maroulla- Hope Holly is not too hungover after her 18th! Speak soon.
I had a terrible time on chemo - vomiting blood, hospitalised, neutropenic etc. I ended up having 3 FEC and 1 Tax. I was supposed to be having 6 FEC but after 3 appalling experiences with FEC my onc decided to try me on Tax to see if I fared any better. In fact it nearly killed me - I went into anaphylaxis and stopped breathing.
That was the end of that as far as I was concerned. The %age risk reduction of chemo was obviously being outweighed by the damage it was doing to me. As most of my risk reduction is coming from hormone therapy I figured that the 4 doses of chemo I’d had were adequate. Both my onc and surgeon told me that the first chemo doses are the key ones and that the 6 figure can be a bit arbitrary. I was also told (and never understood the maths of this!) that 4 doses out of a planned 6 gives you 4/5ths efficacy. So it appears that 5 is probably a full course but they give you one for luck!
I agree with you, Andi, you have quite a bit of evidence of people who didn’t have the whole course now, it was a good thread to post!
Hope you get on alright tomorrow,
let us know how your meeting went.
Heather.xx
I didnt have my number 6 as I was hositalised twice with number 5 and basically was falling apart!! They said anything over 4 is a bonus and some people reach the stage where they can not complete the course.
I do worry about not completing 6 but i had a 1 and 2 yr old at the time and i felt i couldnt sacrifice my present for my future.
I was dx on 25th Sept 11mm Grade 3 stage 1. had lumpectomy in Oct with 5 nodes removed (all clear) although slight vascular invasion. I was due to have 3xfec and 3-4tax, but on my 1st chemo had a reaction to E so my onc has changed my regime to (in his words 6 taxotere, but we may stop at 4). So i’m guessing the magic number is 4 and anything more than this is dependent on the individual.
I’ve had 4xAC and 1xTax, and I’m not sure I’ll be having anymore. I
am meant to be on the accelerated 2 weekly cycle but already it’s delayed because my fingers and toes are so badly affected, plus now I have flu and there’s no way I’m having chemotherapy while I’m getting over this - I feel like death. Perhaps I’ll make it to the end, but it’s looking less and less likely.
Sounds like you’ve had the best benefit already. xx Jane
Thanks to you all for posting on this thread…Jane, Sarah, Evie, Heather, Ms Molly, Tina and my good mate Andi. (sorry if I missed anyone!)
It really has put my mind at rest that I’m not the only one who has made a decision not to have the last chemo dose. I did feel a bit of a failure really that I wasn’t UP TO taking that last dose.
My good mate Andi has her appointment tomorrow. She too has an important decision to make about continuing after having had 4 chemos. We have both had our fair share of hospitals and feeling ill, Andi more than me!
Please keep your info coming as Andi and I are really interested to hear from others experiences. THANK YOU ALL.
Incidentally, I am due to start radiotherapy on my 43rd birthday (4th Jan) lovely b’day present…NOT. 3 weeks I was told…Now I’ve been told, because of my age, I’m going to have another weeks BOOSTER.
Diary note: Must ring hospital tomorrow to get this damn PICC line removed.
