To continue FEC-D treatment... or not? Advice welcome!

Tam178

I am looking for opinions, although I know the decision is mine to make, but anyone who could voice opinion either way I'd welcome the feedback.

Helpful info: I am 37 yo with kids age 3 & 5, and the IDC tumour was 1.8cm max with DCIS found too and 0/5 lymph nodes tested positive. ER/PR +ve HER2 -ve. Lumpectomy +SLNB (Jan 2014)+ Radiation (21 treatments to breast incl 5 day boost) & Tamoxofen to follow chemo. Plan was for 3 FEC & 3 D chemo...

I completed one FEC round (25 Feb) at full dose but due to mouth ulcers (plus nausea etc) dose was reduced by 15% for round 2 (11 Mar) & 3 (1 Apr) where the nausea and mouth sores were still present but lessened. I started Taxotere round 4 (29 Apr). I had Neupogen injections daily (day 3-7) which caused me awful bone & muscle pains from my jaw to my ankles and I could barely walk and spend most of those days in bed with the heating pad and doses of hydromorphone every 4 hours plus Celebrex twice a day... Just for extra fun on day 7 (just as the mouth sores re-appeared!) I developed a fever of 38.2C and ended up at the ER with Neuts 0.04 and was admitted for Febrile Neutropenia with IV antibiotics. The blood culture came back positive for staph and confirmed sepsis - scary stuff with no immune system. After 3 days my WBC were up to 12.6 (good fighting the infection!) and Neuts were 1.9. I was let home on day 4 (last Friday) with 3 more days of Cipro antibiotics. I did start to get less body pain since I came home (stopped the hydromorphone) and yesterday I actually felt I wasn't in pain just moving and have even stopped taking the Celebrex!

I've also got awful dry eyes (taxotere causing this) had awful constipation from the meds which caused an anal tear (great fun!) and have to brush my teeth & use medicated mouthwash 4 times a day plus myrhh tincture to keep on to of the mucositis... All this is NOT fun!

I met with my oncologist today who was very sorry for what I'd been through and basically offered me two choices... But I only have until Tuesday to decide (when next chemo is due)

1) Continue Chemo - this would be a 15% lower dose (again) for at least round 5 and then possibly (but unlikely) go on to round 6... Likelihood in his opinion is that I will be hospitalised again with another infection due to the increased risk with my sore mouth and previous reactions...

2) Abandon remaining Chemo and look at removing my ovaries as soon as I'm well enough after radiation is complete to give me additional protection given the ER/PR +ve receptors.

My med onc. was stongly leaning towards option 2 as he feels he's "broken me" enough so far and really wants to "cure me not kill me"!!!

So far I have agreed to proceed with the paperwork for option (1) so I will have the choice, but the more I try to weigh up pros & cons the more I am leaning to option 2... Getting the PICC line out before the summer to enjoy the water with my kids plus no more chemo sound SOOOOOO inviting. BUT if I can stick with at least 1 more chemo he said there around another 1%ish benefit in the chances of recurrence...

WHAT WOULD YOU DO??????????????????????????????

Curlylocks

Wow, it sounds like you have been through the ringer.  I have done chemo twice, 2nd bc diagnosis this year after 8 years of being cancer free.  I was er/pr+, her2- with a large 4 cm tumour and 3 positive lymph nodes when diagnosed at age 41 in 2005.  I did 4 rounds of a/c and 4 rounds of taxol - was very lucky didnt have any chemos delayed and never did any shots.

This time around I was diagnosed with a new Primary bc (not considered a recoccurance due to change in receptors) er/pr-, her2- in January 2014 - I will be 50 next Tuesday.  My 2nd diagnosis was discovered via my pathlogy report after having what was suppose to be a prophylatic masectomy with DIEP reconstruction in December 2013 due to high risk family history in past few years (two sisters diagnosed with bc). I did 4 rounds of cytoxan/taxtotere.  I have a neulesta injection after each round, had a horrible time with this most recent round of chemos but managed to finish all 4 rounds.  I have been done chemo for 4.5 weeks.

It sounds like you did everything right including the injections and still ended up with an infection.  You are young which makes your cancer more aggressive as was mine (41 is still considered young with bc).  I cant tell you what to do nor can anyone else on this board.  I will give you my opinion though, I would lean towards your oncologist's recommendation you want to get rid of the cancer but not kill you in the process.  I am sorry you had such a difficult time.

I also had my ovaries removed at age 44 due to my er/pr+ status and was on Armidex for 5 years.

Michele

bettysgirl

so sorry you have been through so much. You have been put through so much, Sounds like your body is telling you what to do in a oh so subtle way. Cutting the dosages has still given your body a tough time, so if it were me i would have to go with the doc and option 2. You have probably had the benefit of the chemo at this time and your body needs to recover. I know it is a scary thing to think about but trust your doctor and your gut feeling. I wish you the best in all you decide to do.

Tam178

thanks everyone! I'm happy to confirm I've decided to go with my M.O.s advice and stop chemo. For ME the small potential benefits (clean margins and negative nodes from surgery mean I was probably cancer free then) are much smaller than the large likely risk of life threatening infection, never mind all the other nasty effects I would likely suffer again.

Please don't think this means it's the right decision for you if you are faced with a similar choice. It's a very personal decision!

I really appreciate your responses, they have helped enormously!