[Dean UK]

Worries about my upcoming stem cell transplant

by Dean UK on Tue Sep 20, 2016 3:59 pm

Just waiting on a date for my stem cell transplant. I'm expecting it to be late October / early November. In the UK, you only get the chance to have a stem cell transplant at the beginning, and you can't get maintenance. When I asked my doctor "can we wait later?", the doctors looked shocked and worried that I asked. I'm probably not being realistic, but I feel my immune system has always been strong, I'm worried that, after my stem cell transplant, I will be too weak in the future to fight back.

My worries are:

1. After the stem cell transplant and my immune system is strong again, am I likely to always be ill months after with colds and new bugs etc. as I have a new immune system?
2. My doctor said it may work and may not. Wow, this is the part I'm mentally having trouble with. Any tips on the mental approach to get through it? I'm trying to stay positive, but I don't mind saying that I am scared dealing with the mental and physical part of the stem cell transplant, specially the sickness part I have read up on.
3. I was also told that the average person after induction chemo can stay in remission for around 18 months if they decide not to have a stem cell transplant. Does this sound about right?

Unfortunately I didn't have a FISH test at diagnosis to find out I was average. I only found about the FISH test when advised to ask doctors from others using this great site. When I did ask my doctors, it was too late after my bone marrow biopsy.

Sorry if I've gone on, but any advice would be great. Thanks

[MrPotatohead]

Re: Worries about my upcoming stem cell transplant

by MrPotatohead on Tue Sep 20, 2016 7:01 pm

Hi Dean uk,

I have not had a stem cell transplant, but I may in the future. I was diagnosed with multiple myeloma in March, 2015, and I have had some of the same concerns you have shared. Let me address them based on what my doctors have told me and based on what others who have had them have shared on this Forum. I would also encourage you to read about others' first-hand experiences as well; there are many posts about transplants on the Forum.

1. Once you recover from the transplant, you should not be any more vulnerable to infections. You are likely to be less vulnerable, since the expectation is that your myeloma will be knocked back very substantially. Your immune system will also likely to be stronger for the same reason once you recover. You may need to repeat many / most of the vaccines you have received in the past to restore your immunity to illnesses you have been vaccinated against.

2. These days, autologous stem cell transplants are safer and more successful than they have ever been. Getting through one can be trying, but most people are able to survive the pro­cedure with few or no complications. I live in the USA and here the practice is to run tests measuring your heart, lung, kidney, and liver functions to make sure you are a good candidate for coming through the transplant with few or no problems. I believe this is true for the UK as well.

Unfortunately, there is no guarantee that the transplant will work in the sense of obtaining a remission, but that is true of all myeloma treatments.

3. I know that one can choose drug or chemo or a combination of the two in lieu of a transplant, and that many people obtain remissions going that route, some of which can be quite long lasting, but I can't tell you what the "average" length of such a remission would be. Perhaps someone else on the Forum has better information he or she can share with you,

On the FISH test, have you asked if the laboratory that did the bone marrow biopsy preserved the cells they extracted? If so, it may still be possible to have the test done.

Deciding whether or not to have a transplant is a difficult decision, and worries are normal. But many people achieve really excellent results.

Good luck!

[Mike F]

Re: Worries about my upcoming stem cell transplant

by Mike F on Tue Sep 20, 2016 7:48 pm

Hi Dean -

I would agree with Mr. Potatohead's assessment. I went through the procedure a few years ago and it really wasn't all that bad. Everyone reacts differently, and it's a real ordeal for some, but it wasn't for me. There was some nausea that was kept well in check with anti-emetics. At one point, I swelled up like a balloon due to all to the fluid they were pumping into me in order to (I think) get the melphalan out of my system. That was annoying, but it only lasted a couple of days before diuretics took care of it. I was out of the hospital in 15 days.

When I got home, I was pretty fatigued for a week or two, and after that I was walking several miles every morning. My doctor wouldn't let me go back to work for three months, but I felt very good for two and a half of them. It was like a mini-retirement and I enjoyed it. I've had a couple of colds and such since then, but nothing more than I used to get in the pre-transplant days.

At your age, you likely have a good chance of getting through the procedure without too many complications, but nothing is guaranteed in the world of myeloma. You pretty much have to play the odds and hope they work in your favor. It's a legitimate decision to forego a transplant and there are quite a few others who have done so. I'm just offering my experience as an example in which it was not a terrible ordeal.

[Nancy Shamanna]

Re: Worries about my upcoming stem cell transplant

by Nancy Shamanna on Tue Sep 20, 2016 8:13 pm

Hi DeanUK,

You ask some very good questions regarding getting a stem cell transplant, some of which may well be specific to your medical situation in the UK. If I read your post correctly, you only have the option of getting the stem cell transplant at this point in your treatment therapy, and you don't have maintenance therapy available after the transplant. I suppose that if the transplant did not work out well, then you would be given additional treatment (not maintenance therapy, even tho they might be the same treatments).

So if you were inclined to have a transplant, now would be the time to have one? Speaking from my own experience, after the transplant, I was still not in a complete remission, and took a low dose of Revlimid for one year. At that point in time, the 'M' protein (paraprotein, M-spike) was not detectable by SPEP. My doctor took me off the Revlimid, and I enjoyed 3 1/2 years of not having treatment! So, to my mind, this was a 'plus' from having had the transplant.

The myeloma did eventually catch up with me again, though, and I had to have treatment again for the last two years. If I had not had the transplant, I might have been on continuous treatments for the last seven years. At the time I had my transplant in Canada, maintenance therapy as such was not yet available, but now it is available, so there are many patients on continuous therapy I think, even after having had a transplant. It is confusing, and one has to know the situation in one's own country well in order to make the best decisions.

Good luck!

[dianaiad]

Re: Worries about my upcoming stem cell transplant

by dianaiad on Tue Sep 20, 2016 10:04 pm

Everybody is different.

Everybody is different.

Every body is different.

That said, until I was diagnosed with multiple myeloma, I would have this twice yearly ritual; I would get a cold, then bronchitis, then pneumonia, then asthma, then over it. Twice a year. Every year. For many years.

Then they told me I had multiple myeloma. Did the transplant, and because I am 'high risk,' the docs put me on maintenance Revlimid, which I'm still on.

I haven't had so much as a sniffle in three years.

Ok, I got shingles a couple of months ago, but other than that? Breathing easy over here.

It may well be that your immune system will be better than ever. It will, after all, be your own healthy cells they put back in there.

It may be that you will have some problems, but you need to know that SOME of us do very, very well with this process.

[Dean UK]

Re: Worries about my upcoming stem cell transplant

by Dean UK on Wed Sep 21, 2016 4:00 pm

Thank you all for the information. Yes, Nancy, you read it correctly. I only have the option of a stem cell transplant at the beginning, and there is no maintenance available unfortunately.

I hope your treatment is going well.

Regards, Dean

[NStewart]

Re: Worries about my upcoming stem cell transplant

by NStewart on Thu Sep 22, 2016 1:07 pm

Dean-

Dianalid said it well, "Everybody is different, everybody is different, etc."

10 weeks after my transplant 6 1/2 years ago, I went back to work full time as a physical thera­pist specializing in treating people with cancer. It was difficult because I still got fatigued quite easily. During the first year post transplant, I developed several respiratory infections, with 2 of them developing into pneumonia. I was really careful about keeping my work space clean and sending patients home if they looked or acted ill. But, my immune system wasn't up to speed yet. Since that first year, I haven't really been ill at all except for shingles at the end of that first year.

Occasionally I will start to develop what seems like it might be a cold, but then my immune system kicks in and the symptoms are gone in a couple of days. So, all in all, quite healthy.

I do avoid people who are obviously ill and stay away from large crowds in enclosed spaces as a precaution. My doctor doesn't believe that re-immunization is necessary since we are getting our own stem cells back with our original antibody sensitivities. But he does recommend the annual flu shot and the pneumonia vaccine which I do get.

I was in the hospital for my transplant for 15 days. I would have been sent home one day sooner, but we had a blizzard on that day and there was no traveling. My hospital stay was un­eventful except for developing nausea that nothing controlled. That lasted for a few months. Vomiting has never bothered me, so I didn't let it phase me. When I went back to work I just knew that there were certain foods that I still had to avoid so as not to be sick at work or else­where.

My doctor had told me to bring lots of stuff to do to the hospital because he said that I would get bored. So, I bought an eReader and loaded it with all different kinds of books to read since I had no idea how good my concentration would be. I had my laptop and some DVD's to watch. I spent all day every day out of bed except for sleeping at night. I walked the halls, read, visited with friends who came to see me, and did stuff on my computer. I was quite busy.

I didn't do maintenance after my transplant even though I still had the same M-spike as when I went into the transplant. It took about 7 months for me to get a response and then my M-spike went down to 0. I relapsed almost 3 years post transplant and went back on the treatment regimen that I had initially - Revlimid and dexamethasone. I'm still on the same regimen and doing well.

All the best for a good response to the transplant and for good health afterwards,

Nancy in Phila

[Dean UK]

Re: Worries about my upcoming stem cell transplant

by Dean UK on Thu Sep 22, 2016 4:02 pm

Thank you Nancy.

Once again, your advice has been a great help.

[Christa's Mom]

Re: Worries about my upcoming stem cell transplant

by Christa's Mom on Fri Sep 23, 2016 1:01 pm

Hi Dean UK,

We found that all the hype and worry leading up to the stem cell transplant was worse than the transplant itself! Nowadays, they have good drugs to control the side effects from the chemo (mouth sores, nausea, etc.).

EJ brought with him lots of books, computers, work, etc. with the expectation that he would be able to get a lot done while he was in the hospital. In reality, the drugs they gave him knocked him out, and he slept most of the time. Having said that, it is important to remember to get up an exercise. EJ's nurses had him walk a mile around the floor every day!

As Dianaid said, "everyone is different." But EJ didn't go on maintenance after his stem cell transplant, and he was in remission for 55 months.

Good luck!

Lyn

[Pioneer]

Re: Worries about my upcoming stem cell transplant

by Pioneer on Tue Sep 27, 2016 3:41 pm

When I was diagnosed with multiple myeloma, I just had serious anemia, that is all. No lesions on bones, nothing at any organs. I did not have even a simple case of sniffles since 4 years. But Ii was at stage III because of high beta-2 microglobulin and my WBC was 1.700 (quite low to catch any simple infection).

I read a lot about stem cell transplants before undergoing the procedure and I had many worries like you. I even had serious depression before I had the transplant. But everything happened very fast and in an unexpected way. I experienced nothing serious during the transplant and afterwards. One month just finished and I have already started to exercise every day (at the moment it is just about 20 minutes, but I will increase the duration every 3 days). Also I have started to work half day.

So leave your worries behind the door, and live your unique experience. Always stay positive and always think that only good ones are waiting for you.

Besides many bad experience with the transplant process, I also read a lot of good ones. There are even people who are still in remission 10 years after.

My doctor always says I am an extraordinary patient with my unusual outlook. Humans and multiple myeloma are really huge mysteries.

With all my best luck wishes!