Stem Cell

Well, that is some news.  I am sure you are relieved but scared.  One thing you can feel good about is that SCTs are becoming commonplace, so the chances of getting it right seem pretty positive.  I will pray for your strength and for the doctor's hands.  When the future seems to get ominous to think about, just take one day at a time.  I know you don't need any more journeys to experience but we don't have much of a choice.  Thank you for letting us know.

We will wait to hear and our thoughts and prayers will be with you along the the way,

Becky

Sounds like a long road, but in the end, promising!!! Keep the faith and don't give up. NO BARRIERS!!!!!! You are still on the prayer list.

Jeff

After exhausting lymphoma drugs (14 drugs in 7 regimens), a stem cell transplant was my only realistic option. I underwent a moderate allogeneic SCT July 17th. I will not say that it is easy, but it may be the only option for a potential cure. I am 63, and quite a few of the transplant patients are older than I am. The younger you are, the more easily you will rebound from it. The bottom line is: you can do it.

lindary said:

timeline

Thank you for responding.

I'm 65. I am looking for kind of a timeline of SCT. I've read that it takes 1 - 2 days for them to get enough t-cells. How long after that do they start the chemo to kill off the marrow? How long does that take? How long after that chemo are the t-cells re-inserted? Were you in the hospital the whole time? From what I have read they won't release you to g home until the blodd counts have reached a certain level which can take at least a week. Was that your experience?

Linda

 

Stem cell transplants have different protocols, depending upon the type of transplant, patient condition, etc. Mine was as follows: What they collect are immature blood stem cells. In the marrow, these immature cells mature and diversify into eight different types of blood cell. They further differentiate once out in the bloodstream. If they are collecting your stem cells (or a donor's cells), they will give several days of Neulasta/Neupogen injections which increase the production of stem cells in the marrow - thus there are more stem cells to collect, and immature stem cells are in the bloodstream, where they can be collected. After several days of injections, they will be collected in a highly refined centrifuge, which separates the stem cells from the mature blood components. Then, the mature blood is returned to the donor. Most can provide enough cells for a transplant in 1-2 four-hour days.

A regimen of conditioning chemotherapy is then given to the patient, to weaken the immune system, possibly combined with low-dose total body irradaition - also to damage or kill the "old" marrow. The next day, the stem cells are transplanted exactly like a blood transfusion. Two days later, two successive days of massive chemotherapy are given, so as to kill any remaining cancer cells in the body. The stem cells are apparently immune to this. Since it is only two days of chemo, the effects are relatively minor. Some transplants are done as outpatient, but some are done in hospital. I developed aa neutropenic fever, and was hospitalized for two weeks. 

During that time, your blood is monitored daily, watching for the development of new white blood cells. Platelets are slower to develop, and red cells may take two months to appear. But, platelets and red cells can be  transfused, while white cells, due to short lives, cannot. Once you have a certain level of white cells for three days in a row, you can be released, provided that you have no complications. You are dependent upon various medications to take the place of your immune system. Then drugs to suppress your new immune system will be introduced, to control how rapidly your immune sustem develops.

In the case of allogeneic (donor) transplants, about half of patients will develop some degree of graft-versus-host disease. This is controlled via immune system supressing drugs. It occurs when the donor immune system is circulating in your body and fails to recognized certain parts of your body. If it does not recognize them, it may launch an attack on them. It can be serious - even fatal, but is closely monitored. NOTE: this does not occur if you are receiving your own cells back. There is much more to the process, but after seven years of fighting, I consider it the cost of living.

lindary said:

Thank you

Thank you po18guy.

This is the kind of details I was looking for. I understand that there is no one fixed procedure/timeline but knowing more, like the one you had, gives me a reference to go along with the pieces I've found online. As far as  I know they are hoping to use my own stem cells. But I hope to get more details on Friday. The only thing I know for sure is that I will be in the hospital for the procedure for at least 2 weeks. 

Found out very little at the dr office on Friday. Few hours after getting home I get a call about needing a blood test for platelets on Monday or Tuesday and asking about when I had a meeting with the transplant team. Told them, hasn't happen. So that is to be scheduled this week too, before the 3rd RICE starts on Thurs. It is going to be a interesting and busy week.

lindary said:

postponed

I received a call from the doctor’s office late Wed that the transplant was cancelled and an appt with the doctor in charge was scheduled for today. One of the tests on the bone marrow came back after our visit on Monday and it showed that some abnormal cells which can convert to a more aggressive form of cancer. What that means is they cannot use my stem cells for the transplant and will have to use donor stem cells instead. Until then I will be on Rituxan maintenance which is every other month. The last time I got Rituxan was Oct so the next one will be in Dec. 

In the mean time the Stem Cell Transplant team will be regrouping and looking into finding a donor for the stem cells. So I get to sit back for a while until they et up the new schedule. 

The Dr at Rush has asked me to come in for a new bone marrow biopsy there. The last one was done in Nov at my local Onc office. The biopsy is scheduled this Wed. I am not sure if this is to get an update on the status of the abnormal cell or to help find a donor for the stem cells. Or both.  Hopefully I will find out more when I am there on Wed. I am hoping the SCT doesn't happen until about mid-Feb so I can get our taxes done first. 

My PMP had me get another thyroid test for TSH and it came back high again. I have to go for an ultrasound for that and then another blood test in 4 weeks. She also asked if I was still drinking a lot of water, which I am. Next was tap or bottled, I drink tap water. So now I am to drink bottled water for the next 4 weeks because tap water tends to be high in floride. When I checked online I found that some bottled water can be high in floride too. Plus it can be in the toothpaste, mouthwash and other things but the level of floride is almost never on the label. 

Apparently an investigation was done in the UK about the effect of high amounts of floride on a person. One of the things they found was an increase in TSH level without affecting other thyroid levels. (T3 & T4). People only need a very very small amount. One site claimed that floride use in the USA was higher than in the UK. (Not surprised since we tend to believe that anything that is good for us must be even better in larger quantites.) 

I am kind of glad of this since I have been somewhat tired for the last several weeks and was worried my RBC and Hgb was low. Now I am hoping it is just the thyroid. They will be giving me a blood test at Rush on Wed so I'll know what those leves are soon.

OO7 said:

Glad you posted

I've been thining about you and wondering how you are.  You made me laugh when you put your taxes first.  Getting all jobs done!  Truth be told I'll be happy when this is behind you.  Seems daunting but I'll be thinking of you and sending you all the sassy positivity, prayers and well wishes your way.

I too have been sluggish, gross understatement.  I even texted my ONC. He ask me if I wanted a CBC but I declined.  I know they're down.  One thing about this journey is that I really have developed a keen sense of myself.  Not sure why my counts don't go up perhaps they're taking there dear old time but it is what it is.  Or it's the weather!

Good Luck and keep us posted!

My vote is for the weather. The only time I haven't found Jan-Feb to be a real motivation killer is when my kids (all 3) had their winter activities. It gave me something to do and look forward to during those days but that was a long time ago. 

For me I still worry that some of my tired feelings could be low blood counts. When I go for the bone marrow biopsy they will also be doing a blood test so I'll know if that is part of the cause or if it is just my thyroid. 

One thing about having the SCT on the horizon is that I have been cleaning out some stuff that should have been done a few years ago. Not sure if I will have it all done by the time I go in for the SCT but I will at least have put a dent into cleaning out the stuff.