[dogmom]

How did you feel during and after your SCT?

by dogmom on Mon Mar 21, 2016 8:51 pm

I would so like to here how anyone felt during their stem cell transplant and the first month after­wards.

My husband will be having his in a couple of months and I just would like to know what to expect to help me take care of him the best I can.

Thanks

[lrankin]

Re: How did you feel during and after your SCT?

by lrankin on Tue Mar 22, 2016 8:28 am

My husband, 48, had his auto stem cell transplant September 28th, 2015. He tolerated the procedure quite well. Fatigue was his main issue and some slight nausea. Towards the end of the process he had bad leg aches. He had this before due to Velcade as part of induction treatment.

One month after the transplant, still periodic leg aches and he would (still does) have fatigue. His fatigue comes in the form of wanting to sleep for 3 days and feeling weak in those 3 days. Then he is fine for days.

[Nancy Shamanna]

Re: How did you feel during and after your SCT?

by Nancy Shamanna on Tue Mar 22, 2016 9:12 am

Hi Dogmom,

I have never been so fatigued as after the stem cell transplant. I think that this was due to having low blood counts, before the stem cells that were infused into my system were able to produce new red blood cells, white blood cells, etc. If it were not for having to get up and go to the trans­plant unit for check ups every weekday I probably would have slept all day! My family (husband and parents) drove me to appointments then. Just having to walk, and then going out for walks in the fresh air, was good for my recovery I think.

I also struggled with chemo brain and having a distorted sense of smell. After developing a fever I was admitted to hospital overnight, in case I had developed a blood infection or C. diff. Fortunately the fever was probably just due to a reaction to Neupogen shots, given to boost my blood counts.

I also took many meds ... antibiotic, anti fungal, and anti nauseant, as I recall. I had to brush my teeth with a foam brush, which was strange, and had no hair! The Hickman catheter also bothered me a bit too. I only wanted to eat really mild foods too, such as applesauce and toast. I just wasn't myself at that time.

I can't say it was a pleasant time, but in retrospect I think it did help me to have a long remission.

[JPC]

Re: How did you feel during and after your SCT?

by JPC on Tue Mar 22, 2016 9:32 am

Hi Dogmom:

In the useful links posting at the top of this section of the forum, there are several forum threads where people have posted in the forum during their stem cell transplants. Right now, Debbie is posting about her stem cell transplant experience.

In February of 2015, my wife had her autologous stem cell transplant. It was definitely an ordeal, but she mostly had minor side effects (i.e. skating through it) except for 3 scary days of engraftment syndrome, which ultimately turned out to be a non-event. Through it all the staff was fantastic, down to the guys and gals who served the food and cleaned the room.

Good luck. JPC

[MaryB]

Re: How did you feel during and after your SCT?

by MaryB on Tue Mar 22, 2016 9:55 am

Well, I will tell you, nothing can prepare you for what he is about to go through. My husband was 69 when he went through his stem cell transplant. It was 3 days after the chemo that it really hit him. Throwing up and diarrhea. This went on for days. You think where is this coming from because he is not eating. He could not eat nor drink and those are a MUST. He was to walk the halls for exercise, he did good to walk to the bathroom.

He was in hospital 10 days then we went to Hope Lodge for 3 weeks. Going every other day for labs. Once his platelets reached 90,000 he was allowed to go home.

Once home he was so tired, still couldn't eat much. He said everything tasted different. It took 3 months to get his strength back. I would say 6 months before he began to be himself. He lost so much weight – 50 pounds.

BUT there were 2 people that went through the transplant that had NO side affects and the man was walking 5 miles a day. Pray you will be like them.

At the time we said NEVER again would he go through that again. BUT he has been in remission for over 2 years now. If need be, he would go through it again. He is back to normal, doing anything he wants to do.

[Mike F]

Re: How did you feel during and after your SCT?

by Mike F on Tue Mar 22, 2016 1:26 pm

I guess I was fortunate in that I didn't have too many ill effects from the transplant procedure. There was a fairly constant battle with nausea while I was in the hospital, but that was well controlled with anti-emetics as long as I stayed on top of it. (Your husband should let a nurse know the second he starts to feel nauseous, as it takes a bit of time for the anti-emetics to work and he won't want to wait until he's really feeling bad before taking them.)

One of my wife's best friends came to stay with her for a few days before I got home and they scrubbed the house down pretty well. The first day back, I was excited, felt great, and overdid things a little. That caught up with me on day 2, and I spent most of the rest of that first week on the couch. The fatigue was pretty impressive. After that, I was able to start going outside for walks and such and slowly building my strength back up. I had one day that first week in which I had a mild fever, but it went away on its own and I had no further issues with illness or infection.

I hope things go well for your husband.

[Mattias]

Re: How did you feel during and after your SCT?

by Mattias on Tue Mar 22, 2016 3:39 pm

Hello!

After the high-dose chemo and the transplant, it took a couple of days before I experienced any major side effects. I lost the the ability to taste what food and drinks really should taste. I was really fatigued and had a couple of days with high temperature requiring IV broad spectrum antibiotics. I never vomited but had to go to the bathroom all the time.

After 14 days, I could go home. At home I was very tired and fatigued. Short walks were really a struggle. After 3-4 months I was in a good shape and still am. It's two years ago, and I'm still in complete remission!

Best regards from Mattias

[dogmom]

Re: How did you feel during and after your SCT?

by dogmom on Tue Mar 22, 2016 4:19 pm

Thanks to all who have posted so far. Such a help.

I am a MLT and have worked in the medical field in a hospital setting all of my life so I hope this will help me some. I know he will have to go through a lot even if his transplant is uneventful, as I hope it is. He will be in the hospital about a week and then we have to stay near the hospital for the next three weeks as we live over an hour away.

My husband's last chemo is scheduled for April 28 and then all the pre-tests, stem cell harvest etc. leading up to the transplant some time last of May to first of June is the estimation, but we will get a more specific calendar soon.

Our myeloma specialist feels strongly that this is his best shot for a long-term remission so we will do what we must do.

[Tishpa]

Re: How did you feel during and after your SCT?

by Tishpa on Tue Mar 22, 2016 5:46 pm

Hi Dogmom,

I just want to pass on some things I learned and/or experienced from my autologous SCT.

I had an easy time with the stem cell harvesting. I received Neupogen to increase stem cell production. Inserting a port-a-cath was a fairly quick, easy process. It took three days to collect enough stem cells for 3 transplants. Since you have to lay back for several hours while attached to a collection machine, a toilet was located next to the chair. I’m glad they got enough for 3 transplants since it could be difficult to get more after starting this process.

They started me on melphalan two days prior to the transplant. Each drip session lasted only 15 minutes. I was given a cup of ice and told to chew while receiving the melphalan. I was told chewing ice while taking melphalan might keep the patient from getting mouth sores. I didn’t want mouth sores, so I chewed so much ice, I couldn’t talk when the drip was turned off. I was lucky the chewed ice worked for me.

Before I left BMT on the first melphalan day, they gave me a backpack that had a saline IV drip container packed inside. This was to help prevent kidney damage that could be caused by melphalan. I’m a bit old and don’t have the best of bladders, so needless to say, I needed to stay close to a toilet. I was expected to track my output too. The second melphalan day was a repeat of the first. I saw on the Myeloma Beacon site that a new formulation of melphalan has been approved that takes some of the kidney danger out of the process. I can’t wait to hear how this works. (See the forum thread "FDA approves Evomela, new IV melphalan formu­la­tion".)

The day of the transplant was a fairly good day. I was told that I might get some “flavor” in my mouth after the stem cells were injected. My flavor was creamed corn. This wasn’t too bad since I like creamed corn. I was told I might throw up. I did after the first injection but not the second.

I was hospitalized for 10 days. I got the usual symptoms: nausea, diarrhea, extreme fatigue, etc. They asked me to exercise (easier said than done since I could barely move at times). They asked me to bathe and wash my hands a lot since bacteria is everywhere including naturally on my body.

As usual, they awaken you at all hours of the day and night. Since I was on a saline drip, once again, I used the toilet a lot. I asked for and got a portable toilet so it was only a couple of steps away from the bed. They don’t want you to fall, so a nurse always had to be present, but it wasn’t always possible for me to wait. They hooked me up to an alarm so they would know I was out of bed (without permission!).

After I went home, things were still quite miserable. I lost all my hair, but I was used to that after my breast cancer treatment. There were 2-3 days when I lay in bed thinking I would be better off dead than to continue feeling the way I felt. I finally remembered that while I was still in the hospital, after looking inside my mouth for sores, the doctor would ask “Are you suicidal?” I answered “No” each time, but that overwhelming feeling of wishing I was dead made me realize why he asked his question.

With all my taste buds gone, it was difficult to eat anything. I ended up losing so much weight, I was down to 113 lbs. Sounds good except it happened in a month’s time so my skin hung loosely in all the areas of weight loss. My potassium was very low so I received a prescription for it. Unfortunately, the prescription caused me to throw up and when you throw up, you lose more potassium. It was a vicious cycle. I looked up foods that were rich in potassium (squash, beans, potatoes, yogurt, etc) and added them to my diet so I could get off the pills. It worked.

There was a 7-10 day process in which my husband was expected to and did attach me to a drip on an every 8-hour schedule. For the life of me, I can’t remember what the drip was for, but probably was to prevent an infection.

Exercise continued to be difficult so I ended up enlisting the help of a physical therapist after the 100 days were over to get my muscles working properly again.

I got extreme peripheral neuropathy. It prevented me from getting to sleep on many nights but once I got to sleep, I felt nothing. The docs could only offer an anti-anxiety pill for the neuropathy, but I won’t take medicines if there is something else. My sister recommended using a massager. We did have a hand-held massager at home. I used it on my calfs, toes and feet. When I used the massager on the nerve center on the top of each foot, it hurt like crazy. Believe it or not, but it worked. That night I got much needed rest and the neuropathy did nothing but improve, but, of course, I continued using the massager as needed.

All my test results improved over time. I had two years of complete remission. I did not do maintenance therapy especially after I read that the progression-free period improves but not overall survival and there was always the possibility I would get another cancer. My cancer is back and I am once again mulling over the possibilities of fighting this again. I am currently taking Ninlaro and dexamethasone. I will start Pomalyst April 4.

I wish your husband the best of luck and hope my experience helps you out.

[Tishpa]

Re: How did you feel during and after your SCT?

by Tishpa on Tue Mar 22, 2016 6:03 pm

I forgot to mention that I got pneumonia about 6 months after my transplant. I was not hos­pitalized but was put on an antibiotic immediately, and everything worked out fine.

Also, prior to the transplant, I got shingles. This can happen because you immune system is com­promised while taking chemo drugs. My shingles had to be treated before they'd even begin the stem cell process. The shingles area (head mostly, but included a part of the neck and face) con­tinues to bother me but may be unrelated to all of this. I take my acyclovir religiously to prevent the shingles from returning.