Stem Cell Transplant That didn’t put cancer in remission

[seaturtle2]

Has anyone gone through a stem cell transplant that did not put the cancer in remission? What medications did they suggest for you?

[Triunfo]

I went through an autologous cell transplant November last year and I’m not in remission. I’m following the same maintenance treatment: Revlimid 15 mg- for 21 days rest 7 days, Zometa infusion every 3 months and calcium and vit D twice daily. How about u?

[seaturtle2 in reply to Triunfo]

My husband had the autologous transplant in May and it did not put him in remission either. We were just at his doctor and the plan is for him to have an infusion of kyprolis weekly along with dexamethasone and revlimid. Three weeks on and one week off. Blood tests monthly I believe to see if his cancer numbers go down. As of now after transplant they are continuing to trend up. Do you have many side effects on that regime? My husband has been dealing with horrible neuropathy since the transplant. Was the transplant rough on you? And what were you on before your transplant? My husband was on dexamethasone, Revlimid and Velcade. His numbers went down on that but they think the Vecade caused the Neuropathy.

[Triunfo in reply to seaturtle2]

Sorry to hear that. I was on dexamethazone, Revlimid 30 mg x 21 days off 7 days, velcade and zometa once a month. Transplant was super rough because of the acute kidney failure. I only needed one RBC transfusion though and have never had any infection. Bad neuropathy as well. Trying acupuncture and it’s helping. Tried Gabapentin but makes me very fatigued and I need to be functional since I’m working full time and I’m a RN. My numbers keep going down but very slowly. Best of luck.

[seaturtle2 in reply to Triunfo]

My daughter is an RN too! Definitely a demanding job. What area are you in?

[Triunfo in reply to seaturtle2]

Good morning. Worked in ICU for years but transferred to days and closer to home 2.5 years ago- days M-F, in a surgical center doing pre-Op and Post-op

[seaturtle2 in reply to Triunfo]

That must be challenging with having mm. How long did you have to take off of work for your stem cell transplant?

[Triunfo in reply to seaturtle2]

A little over 6 months because of doing direct patient care. I returned after I got the first set of immunizations.

[seaturtle2 in reply to Triunfo]

That’s great. Did you say you had neuropathy? If so were you weak and clumsy from it? Did it make it hard for you to return to work? And are you in remission now?

[Triunfo in reply to seaturtle2]

Not in remission. Pain and numbness in the toes but won’t let it stop me.

[seaturtle2 in reply to Triunfo]

That’s good! My husband is not letting it stop him either. Now that that they have blood pressure regulated and he doesn’t fall he is up to walking a mile every day and seems to be staying very positive

[seaturtle2 in reply to Triunfo]

He does weekly infusions of krypolis and dexamethasone that day along with Revlimid daily. 21 days on, 7 days off. Has been in this regime since about 90 days after transplant.

[Hidden]

Hi seaturtle2,

I know it’s been 5mths since you posted but I only joined yesterday so my reply may or may not be helpful.

I had my SCT in Oct.2016 & my experience was, thankfully, not too bad, discharged after 10 days to my surprise & delight.

In remission for approx. 6/7mths before Paraproteins began to rise again, ie..unsuccessful, oh well.

Eventually I started a maintenance regime of 25mg Revlimid for 21 days with 7 days recovery & 40mg Dexamethasone every 7days.

This has served me well with my Paraproteins generally plateaued around 2.0 to 2.5 for approx. 22mths., some blips, noticeable easy bruising & some weight increase & slightly wider face around jaw line during 2nd yr, all expected with long term use of steroids, a few other minor but manageable side effects but nothing major. The concern for me is that this regime is, on average, good for approx. 2yrs., I hit that marker in 2mths time so lets see if I can sail past the oft wrong statistics.

It’s worth bearing in mind that whatever other patients feedback all treatments effect different patients in different ways with varying degree’s of success & failure, there never will be a one glove fits all, only guidelines& then adaptations for each individual patient until a regime is found that works for that person, I truly hope that your team & yourself have now found what works for you seaturtle2, Hang in there.

PlymouthBoy.

[AllswellWI]

My 2012 auto transplant didn't put me in remission, but kept my mm at bay for 5 years. I had maintenance therapy (Revlimid) for most of that time, was off meds for 10 months when that stopped working, had radiation for a plasmacytoma then had another around of chemo (KVD) in prep for 2nd auto transplant. Following that transplant I've been in "remission" nearly 2 years. This could change at any time, I know, but the disease apparently responds differently at different times to a variety of meds. Don't be discouraged.