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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Mon Oct 26, 2015 8:49 pm

Hi mathineer,

Sorry to hear your port got infected. As the chemo does its job, it makes us more vulnerable to bacteria and viruses. I had shingles for the first time in my life after 4 cycles of chemo.

Hopefully they will get that straightened out for you.

RT

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

Re: Inpatient autologous stem cell transplant at UC Davis

by Mike F on Tue Oct 27, 2015 10:57 am

Hey RT -

I had my inpatient auto-SCT at UC Davis in February of 2013. I thought they did a pretty great job of it. Are you working with Dr. Tuscano? I really liked him.

Best of luck - hope you are out and about in short order.

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Tue Oct 27, 2015 1:28 pm

Hi Mike,

Yes, Dr Tuscano is my main transplant doctor. The whole team here is very good. I am glad for my caregiver that we didn't have to do this in the Bay Area. That would have been much harder.

RT

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

Re: Inpatient autologous stem cell transplant at UC Davis

by Mike F on Tue Oct 27, 2015 2:42 pm

Hi RT,

I don't know if Dr. Tuscano will remember me, but if you get a chance please tell him hi from Mike, the UC Davis mass spec chemist who turned the little bedside table into a standing desk for his laptop. (He might possibly remember that.)

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Inpatient autologous stem cell transplant at UC Davis

by TerryH on Thu Oct 29, 2015 3:45 pm

Hi RT,

Just thought I'd drop you a quick note to wish you well. I suspect that you're going through – or have just been through – the worst part of the transplant process. I hope it hasn't been too hard on you, and that you're starting to feel better.

Good luck, and thanks for sharing information about your transplant with us.

TerryH

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Fri Oct 30, 2015 10:57 pm

Today is Day +10. My ‘counts’ bottomed out yesterday, and my white cell and neutrophils appear to be clawing their way back to life. Platelets were 19, so I got an infusion of those.

Yesterday I started getting a fever (over 101 F / 38.3 C), so they ran a bunch of tests for bacterial infections and so far haven’t found anything obvious. Will take a few days to get all the test results. Still running a fever today. They do not always find a specific cause for fever.

I’m on many strong antibiotics to try to get the fever down. It is still very hard to eat – I can handle only small quantities of mushy, bland foods. Have had diarrhea for several days, and my lower bowel is pretty sore and spastic. Tried some Imodium and it did seem to help a little.

We’ve bean experimenting with different nausea meds to see what might be the best combination. Taking more Ativan than I'd like to, but at least I'm getting food down.

The Neupogen shots cause body aches, so between the fevers, body aches, and gut problems, I’m spending a lot of time horizontal in bed. Definitely feeling weak. Doctor says things will improve day by day as my counts continue to rise. My caregiver visits me everyday and helps me forget how crappy I feel. We are strategizing soups for the new crock pot.

I hope to be out of the hospital in roughly a week, but expect a significant period to get my strength back, especially the rehabilitation of my battered GI system.

Any tips of rebuilding your gut, post transplant?

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

Re: Inpatient autologous stem cell transplant at UC Davis

by gardengirl on Sat Oct 31, 2015 9:12 am

RT, Thank you for posting all this...I do appreciate your detailed gut stories as that is my biggest fear. My transplant doctor said that everyone gets a fever with vomiting and diarrhea. I go in next week to start this adventure. Like you, I am very healthy and rarely get sick, so this will all be new. I hope others chime in to provide tips on rebuilding the gut...my guess is the best answer will be TIME. Best wishes to you....hopefully the worst is almost over!

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Inpatient autologous stem cell transplant at UC Davis

by JPC on Sat Oct 31, 2015 10:37 am

Hello RT:

Thank you for your followup. For my wife's case, the 3 days where the numbers bottomed out were the most worrisome for me, but we did get through them. There were "bumps" in the road, but nothing that made the tires fall of the car. She had a couple of days of fever that started after the white count started coming back. At first they assumed it was an infection. After several labs coming back showing no infection, and the fever still there, they declared it engraftment syndrome. My wife has always felt like crap when she had a high fever, and for six hours she was shaking and miserable, probably just due to the elevated fever. That was one of the "bumps". Engraftment syndrome is the relatively mild form of GVHD that occurs in autos. Later I read an expert in this area stating that it actually occurs much more frequently than most people comprehend, maybe in 20% of all cases. Where no infection was found, and there was an unexplained fever, it probably was engraftment syndrome. They gave her methylprednisone via IV, I believe for 12 or 24 hours. Usually the engraftment syndrome, if it occurs, clears itself, but my wife needed the methylpred. From that point on was down hill. I am writing this because of the general similarities, of course I have no way of knowing whether or not it applies to you. But since you are on your PC (or other device) anyway, you could possibly occupy yourself in researching that topic, it might be of interest to you. Hopefully within a couple of days you will be on the down hills side. Best of luck to you and thank you for sharing your experience. JPC

JPC
Name: JPC

Re: Inpatient autologous stem cell transplant at UC Davis

by computerteacher on Sat Oct 31, 2015 11:23 am

Hi RT! The GI issues can be so overwhelming. I remember (not so long ago during my ASCT) being so arrogant about having a "commode" bedside..... the quote" I don't know why you are bringing that in here, it will just get dusty ...." came back to bite me (you know where -- smiles). I am sending positive thoughts your way. Your inner strength and outer strength (your caregiver) will get you through this.

Denise

computerteacher
Name: Computer Teacher
Who do you know with myeloma?: self
When were you/they diagnosed?: November/December 2014
Age at diagnosis: 58

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Sun Nov 01, 2015 1:58 pm

(Day +11) My doctor mentioned this morning that I may have GVHD in a mild form. I had fevers that last few days, but nothing was found in the tests for specific bacterial infections. I had a dramatic jump in WBC from 1.5 to 12.7 in one day, so they've stopped Neupogen (yea!). The Neupogen was giving my body aches. My fever has once again abated, so I'm hoping they won't start steroids.

My GI system is being 'managed' by Ativan (0.5 mg every 6 hours), Imodium, Gas-X and pantoprazole. Then nausea is under control, but hunger is huge challenge. My poor gut. Diarrhea continues but I think the Imodium helps a little. Hopefully once I'm off the antibiotics and anti-fungals, things will improve somewhat. At least they switched me to IV instead of pills (for antibiotics and antifungals). Pills definitely made me more queasy.

RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

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