[RadiantTiger]

Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Thu Oct 22, 2015 8:36 pm

I’m starting a series of posts about my stem cell transplant. I’d like to the posts to newly diag­nosed patients facing the difficult choice of transplant or no transplant. It is so important to hear a wide range of stories, because we are all completely different in terms of our age, general level of health, disease stage, and symptoms. The Beacon has been pivotal in my myeloma learning curve, so I’d like to give back in my own way.

Backstory

I was diagnosed in January of this year (2015), at age 54, and was in quite good health prior to this diagnosis. Never have really been sick in my adult life, except for minor colds. No flu in 20 years. Being anemic (hemoglobin < 9) was how I got referred from primary care to hematology/​oncology for the official diagnosis. I did have pains in my rib area, but they seemed to come and go, so I didn’t guess it was some weird disease.

Bone Marrow biopsy and 2.3 g/dL (23 g/L) M-spike put me at Stage II, 63% plasma cells in the bone marrow. Small bone lesions in skull and iliac wings. I have the IgA kappa light chain brand of myeloma. I have the trisomy 15 defect (considered ‘standard risk’).

In February I started induction treatment – full strength on Revlimid, Velcade, and dexa­metha­sone (RVD). Went for 6 cycles, got a ‘partial response’. Seems like after Cycle 4 my IgA num­bers rose a bit. Wondered, too, if the shingles and 2 week break I had to take after Cycle 4 affected my response. Doctor though it could also be another clone which affected the re­sponse.

I have almost no bone pain, except for the tiniest periodic twinges in my rib area – a significant improvement from my state prior to treatment.

When I first read about transplant, I say ‘NO WAY’, but the more research I did, and the more debilitated I got from induction treatment, the more the transplant seemed like a good risk to take. It was extremely helpful connecting with my local in-person support group here in Sacramento. I got to meet some of the ‘younger’ people like myself who had had great results from transplant, and didn’t have a lot of complications.

I am also hoping that I can get a ‘treatment holiday’ after this transplant, during which time I will go whole-hog on integrative medicine to rebuild my digestive system and support my immune system. I am seriously tired of being on drugs all the time. But I must be patient and see how the transplant turns out before I plan my next strategy.

Stem Cell Mobilization Phase

About 4 weeks ago I got my chest catheter installed, then overnight in the hospital to get chemo - Cytoxan (cyclophosphamide) and etoposide. Then the next day I started my Neu­pogen shots, which continued for 10 days. The chemo definitely made me queasy and the Neupogen got a bit rough after 4-5 days. So that 2-week period after and during the mobili­za­tion was somewhat debilitating.

My stem cell harvest was excellent, though. Got 6.8 million on the first day and 6.3 on the second day, so easily met my 10 million quota.

Got a nice 2 week break after this mobilization / harvest period, then checked in to the hospital October 19th.

Start of the Transplant

My transplant is inpatient at the University of California - Davis in Northern California. I’m glad that its inpatient. If outpatient, it would be a lot more work for my caregiver, and 2 hours a day of driving in traffic while you’re feeling queasy is definitely not fun. I guess there are pros and cons to both inpatient and outpatient approaches. But I’m happy with the team here are UC Davis. Nothing but good things to say about them.

Today is ‘Day 1’ and I am doing pretty well. Not hungry, but not nauseous either, so did not take any nausea medication last night or this morning. I am drinking ginger tea made from fresh ginger root, so that’s probably a factor too.

Getting my stem cells yesterday was quite a ceremony. There were about 5 people in my room - 2 doctors and 2 nurses and my caregiver. I guess they were concerned about reactions to the stem cell preservative. I did have this weird super dry throat feeling with the infusions, that was helped by sucking on popsicles. Went through 3 and a half popsicles with my 4 bags of stem cells.

So today my white cells went up, and red cells went down. Hemoglobin is approaching 8, so might get a blood transfusion tomorrow. I was well enough this morning to do 1 hour of Qigong (a standing moving meditation practice similar to Tai Chi).

So far, it’s all going well. My caregiver has been wonderful, and my team here makes me feel safe, and takes care of my needs.

[Beacon Staff]

Re: Inpatient autologous stem cell transplant at UC Davis

by Beacon Staff on Thu Oct 22, 2015 9:32 pm

Thank you, RadiantTiger, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the transplant experience is a smooth one for you.

For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:

"Useful links to existing forum discussions"

in the section labeled

"Stem Cell Transplant Experiences of Beacon Forum Members"

Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.

There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".

[JPC]

Re: Inpatient autologous stem cell transplant at UC Davis

by JPC on Fri Oct 23, 2015 6:27 am

RT:

I am glad to hear that you are taking everything in stride, and I speak for the other Beacon Readers when I say that it continues as smooth as possible with the minimal amount of bumps in the road and issues. Are they encouraging you to walk and/or ride the stationary bike?? Good luck.

[mikeb]

Re: Inpatient autologous stem cell transplant at UC Davis

by mikeb on Fri Oct 23, 2015 11:02 am

Hi RT,

Thanks for your SCT post. It sounds like things are going pretty much according to plan for you so far. I hope that continues!

Getting the stem cells definitely is a ceremony. When the nurse wheeled in the mobile freezer, pulled out the bag of stem cells and stuck it in another compartment with warm water to warm them, then transferred them to a giant syringe, it all reminded me of some strange religious ritual.

I second JPC's question/suggestion - exercise as much as you can by walking or pedaling. You'll be glad you did.

Best wishes to you, and please keep us posted on how things go for you.

Mike

[RadiantTiger]

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Fri Oct 23, 2015 10:54 pm

Day 3

Day 3 today (5th day in hospital) and my energy level is still reasonably good. Stomach is queasy, but I’m still managing to get food down without taking a lot of nausea meds. Can't say I have much of an appetite. Getting a bit restless after 5 days in this little room plugged into my drip machine. Will gown up and go for a walk in the halls tonight, I think.

Looking forward to moving to my upgraded room tonight or tomorrow. It is bigger and has a step machine so I can try to get more exercise. I really enjoy doing my Qigong exercises during the day. Hope there is space for my meditation floor cushions in the new room (this room is too small).

Since this is the Beacon, I will just go ahead and talk about my personal experience of GI issues of transplant. All drugs seem to constipate me, no matter what. So I am not one the people who has (so far ...) gotten diarrhea from transplant. On the contrary, I take Senokot (sennosides), stool softeners, plus a vitamin C / calcium / magnesium mix. So far this formula is working fairly well. I know everything can change day to day though, since millions of cells in my digestive track are probably dying off as I write this. Hopefully some are growing back at the same time? Normally I wouldn’t like to bore people with my day-to-day gut functioning, but it’s part of the transplant story, for sure.

In other body news, feeling pretty bloated with all the IV fluids (carrying about 12 pounds of extra fluids as of yesterday), but the doctor says it’s important to flush out both the melphalan and the DMSO stem cell preservative, so its fine with me. I wonder how that part works when you’re an outpatient? Do they just tell you to drink a lot?

Though it’s not fun here, I am touched to be served by so many people. I just sit here, and people do things for me all day. My primary caregiver (my boyfriend) is being so unbelievably sweet and caring. The nurses are all really great too. Feeling gratitude, and knowing I will get through this just fine.

RT

[Cheryl G]

Re: Inpatient autologous stem cell transplant at UC Davis

by Cheryl G on Sun Oct 25, 2015 1:25 pm

Hi RT,

Thanks for sharing your transplant experience with everyone. I find these "transplant journals" to be really valuable, and I'm sure I'm not the only one.

I hope you were able to move to your new room, and I especially hope that you've been able to avoid the challenging GI-related side effects that so many face during their transplant.

Good luck!

[RadiantTiger]

Re: Day 4

by RadiantTiger on Sun Oct 25, 2015 5:59 pm

Day 4

Hi Cheryl,

Alas, my GI issues are getting more challenging. Pretty bad round with queasiness yesterday and today, so trying more anti-nausea meds. I feel like I should get a prize whenever I can eat!

Happy to report that I have had no fevers or mouth sores yet.

White blood cells fell to 1.1 today, so the ‘turnaround’ should start in a few days.

I like to close my eyes and imagine I am lying in a warm, fresh, stream, flowing around and through my body. All the dying cells are being carried away by the stream, and the baby engrafting cells are fed by the incoming fresh water - the water of life! Inside my bones a brand new world is growing, full of all the right cells it needs to create my new immune system. I feed my new immune system with each breath, allowing the breath to flow up and down, and in and out of the bones.

“My bones are healthy, strong and full of life.”

Lying in complete stillness and relaxing my gut when queasy. Queasiness can cause you to contract, so I’m trying to consciously relax. It does seem to help let the energy circulate around the gut area.

Now it’s just a game of ‘relax and wait’.

RT

[Nanjeanne]

Re: Inpatient autologous stem cell transplant at UC Davis

by Nanjeanne on Sun Oct 25, 2015 6:06 pm

Hi Radiant Tiger

Just a thought re the nausea . . . have you ever had acid reflux or taken something like Nexium before? The reason I'm asking is when my husband was having his ASCT, there was one day he felt like he was losing his appetite and feeling a bit nauseous. The anti-nausea meds didn't really help but when he spoke with his nurses, he mentioned that he did have acid reflux and did take Nexium regularly. They got approval to add some form of that into his IV and it did the trick! He never lost his appetite after that and ate 3 meals a day every day after. He was also able to drink a lot and I think that was key to his having a relatively easy time. So it's worth a shot if you have, in the past, found that a Nexium type drug has helped you.

[RadiantTiger]

Re: Inpatient autologous stem cell transplant at UC Davis

by RadiantTiger on Sun Oct 25, 2015 6:51 pm

Hi Nanjeanne,

I believe I am getting Prevacid (lansoprazole) for acid reflux. So far I have not had issues with acid. Good suggestion though.

I have a feeling things will be changing day-by-day at this point.

RT

[mathineer]

Re: Inpatient autologous stem cell transplant at UC Davis

by mathineer on Mon Oct 26, 2015 12:17 pm

I'm going to be watching your postings closely. I am 74 and was diagnosed with multiple myeloma on August 20th - with a healthy background like you. I went to Indiana University Medical Center to be evaluated as a candidate for stem cell transplant and was approved. "You're a 74 year old in a 60 year old body", was the doctor's comment.

Meanwhile, I am doing four rounds of chemo -- Revlimid, dexamethasone and daratumumab (clinical trial). My local oncologist thinks I may not need the stem cell transplant but wanted me to be evaluated "just in case". I am also Stage II with a 2.3 g/dL (23 g/L) M-spike level.

Everything was going well with my meds and weekly infusion until my port got infected (after being used successfully four times). After six days of hospitalization, IV antibiotics, and lots of blood tests my chemo is now on hold. We are waiting for further blood testing to get more information on my infection and to continue to treat it appropriately. I am worried that this will put me back to Square One in my treatment, and am also hoping that I can continue with the clinical trial treatment.

Your postings will be quite helpful to me and I look forward to following your (hopefully successful!) treatment. Hang in there!