Stem cell transplant

Max, you are too kind. The following must be taken with the understanding that my journey has been an absolutely unique and challenging experience. I underwent a moderate-intensity haploidentical allogeneic transplant in July, 2015, with my son as the donor. It was scheduled as an outpatient procedure. Of course, I developed a neutropenic fever a few days later and was then hospitalized. Although I am normally a rather stoic patient, I absolutely hated the hospital. There for only two weeks, it was at the low point of my blood numbers, so I was living on transfusions. In my case, it was as close to a near-death experience as I have had. My mind knew that cell engraftment was essentially guaranteed, but my body sensed that it was dying. I spent a lot of time curled up, either asleep or semi-conscious. There were days when I could barely think and to utter a complete sentence took all of my energy. However, once the cells engrafted, the situation quickly reversed itself.

I developed acute, then chronic Graft-versus-Host-Disease (GvHD), which I am still fighting. However, the alternative was to risk a third relapse of either or both of the T-Cell Lymphomas that I had - which probably could not be stopped. That, and I had developed a third, treatment-related marrow cancer (MyeloDysplastic Syndrome - MDS) which is a precursor to Acute Myeloid Leukemia - a truly bad cancer to have. So, the decision, although extremely serious, was quite easily made. 

At this point, a major difference occurs depending upon the type of transplant that you receive. Autologous transplants have a rather rough conditioning process to go through. Normally, they are "myeloablative", in which your bone marrow is completely killed, to be replaced by a re-infusion of your own hematopoietic blood stem cells. Engraftment of those cells in your marrow is basically assured, as they are simply your own cells being re-introduced. There are no rejection issues with autologous transplants, but their ability to permenently eliminate cancer cells is limited. In some cases, relapses of the prior cancer can occur.  

Now, if you are slated to receive an Allogeneic transplant, things will go differently. Your marrow may or may not be completely ablated. In some cases, your marrow is only partially ablated, so that you have some immune system left to fight any remaining lymphoma or common infection with. Engraftment of the donor cells is not guaranteed, and there is a certain failure rate. Mortality can run from 10-20% or so, but we must remember that many patients are older and in marginal health. Once your donor cells have engrafted, they begin circulating and encountering various tissues in your body. In some cases, they recognize various organs as foreign and will attack them. This is known as Graft-Versus-Host-Disease. It can be both acute and chronic, with acute GvHD being much more of a threat - potentially fatal. However, immune suppression drugs are employed to control the rejection issue and mant go on to have few problems. Some, however, have more of a challenge.

Generalization: Autologous transplants are perhaps more difficult going in, and far easier later on. Their limitation is that they have less Graft-versus-Lymphoma-Effect in that they only restore (re-boot) your original immune system - which failed at the time you develped the lymphoma. Allogeneic transplants may be easier going in, but have potentially many more complications afterward. You may have lifetime GvHD to deal with, but the transplanted immune system is far more likely to eradicate any remaining or relapsed lymphoma cells. It can be a huge trade-off.

The stark difference between allogeneic transplants can be seen in these two threads from another forum:

https://www.cancerforums.net/threads/46997-Transplant-time

https://www.cancerforums.net/threads/46035-One-haploidentical-transplant-experience-(ongoing)

Hello, Catwink!

I had an autologous stem cell transplant last year – actual date of transplant was 7/7/16 (considered a second birthday and called Day Zero). Po is right, the Autologous has a rough conditioning process but nothing you can’t handle.  SCT’s have been around for 30 or 35 years!  A number of different NHL conditions now allow for out-patient SCT’s but I’m personally very glad mine was done as an in-patient – which was a 24-day experience.  Just a few days before the actual transplant day, the prep chemo does kill off your bone marrow and great care is taken to lessen the discomfort.  At this point and for about a week +/- after getting your cells back, everyone is very strict about germs and bacteria – remember your immune system will have been knocked on its butt. 

IN THE MONTHS PRIOR to Zero Day, you will have 2 ports installed (one for chemo, then a later one for the apheresis catheter….which is the for collection of your blood plasma).  You’ll also have the various pre-admittance tests (lung, heart, etc.), several chemo infusions, a bunch of Neupogen shots (to beef up your blood for the plasma collection), plus a couple of classes (transplant education, care of the catheter).  During the entire process (from now until your first post-SCT follow-up,  just keep eating and working out and remembering that you are an unbeatable Viking/Amazon.  There will be times when your appetite just disappears and nutrition is huge, so start eating big-time right now. 

Keep us all in the loop and you’ll get our take on each step and tips on how to make some of the steps easier (like taking a Claritin a half hour before each Neupogen shot to ease or eliminate joint pain.) 

Doc, nurses and literature all say that it can take 6 to 12 months for harvested stem cells to complete their bone marrow work and for one to feel normal again.  I, however, thought that would be hogwash for ME and I'd be quickly be back to my old walk-three-miles-a-day-self.  But truth is I’m almost 11 months out and still tire more easily and don’t have the stamina I used to have.  Perhaps that’s because my onco has me on Rituxan maintenance; an infusion every 3 months for 3 years, which has its own fatigue and other side-effects.      

Best to all - Paella

Hello Cat!

i am coming up on 8 months post autologous stem cell transplant.  I actually had to look back on some of my posts to remember everything. I was in the hospital for 18 days, came home for 2 days and went back in for 5 days due to a fever.  

The suggestions I read on this board were more helpful than any guidance I received from any medical person. Paella, Thank you!!!

i did lose my appetite. I didn't think it could ever happen!!! But it did.  I forced myself to eat at least a little for each meal.  Kellogs Sugar Frosted Flakes became my best friend for awhile. So feel free to eat as much as you want now! 

i had BEAM.  I was warned about the loss of appetite, the runs, and the fatigue. Of course I got it all, but still managed to walk the halls, shower and eat everyday.  I think PO was the one that said, they make you eat, shower walk, eat, walk, eat, walk, eat...everyday.  There were days after I was home that I didn't think I would make it through a shower and the stairs to my bedroom looked like a mountain. 

The hospital I was at had a nice outside area which I frequented.  Of course I looked like a duck because I had to wear a mask and had no hair, but that's ok.  

 8 months later I have some lung problems they think was from one of the chemo drugs, but Prednisone helped with that.  Side effects?? Yep,  I look like a gopher full of nuts with short curly hair! 

My immune system still isn't 100% and have once again picked up a good chest cold. No fever so I have to just let it run its course.  CT in 2 weeks.  The fear of the results is lingering in the back of my mind. 

We will all be here for you!!

Sharon

So, when (approximately) will you be admitted??  I was told to take a supply of mints to chew while the heavy-duty chemo was infused - at least I remember it that way...get it mixed up with the cherry popsicle that I sucked down during the actual transplant hour or so.  Anyway, take mints and ask for cherry popsicle.  Also take advantage of all the PT you can get while you're there.  And any recreational therapy - it gets you out of the room...one makes you work and the other makes you laugh (the chit chat from other patients, the games, etc.) 

I'll be thinking about you!

Paella

catwink22 said:

July 2017

I was tentatively scheduled for July 15, but there is nothing permanently scheduled right now. I have an appointment on 29th, so I will have more information after that.

Please share what develops in your treatment plan, cat.

max

catwink22 said:

Thank you everyone!

All your replies are very helpful! I will also be receiving BEAM. Was there anything specific that helped you deal with the anxiety before you went for the transplant? I find the closer it gets, I'm beginning to experience periods of high anxiety & fear. I have never had these feelings through out my treatments so this is new to me.

First time mine was scheduled I was anxious. I think it was because it took my body so long to bounce back after ICE. My counts were very low and I required transfusions and nplate injections. I was so fatigued I couldn't imagine going in and having my counts dropped to nothing and fighting my way back. Then my lung function wasn't high enough to go through transplant.  Second time I was scheduled I had went through more ICE since I couldn't tolerate Brentuximab and Opdivo stopped working.  Counts were low again, more transfusions and fluids.  I was more mentally prepared and less anxious this time.  I passed my lung function, got my bloodwork done and was getting some fluids with potassium. I was ready then my blood work came back and my creatinine was 4. My Mugga (heart test) was canceled. Now I'm waiting for my creatinine to drop and living in limbo. It has dropped to 3, but won't budge.  The nephrologist is talking biopsy, but my platelets are 50.  I'm going to insist on nplate before biopsy.  I know God is with me through every step of this. If it is my time to be called home I know where I'm going. Believe me I still have breakdowns, but they are short lived. I'll pray for your anxiety and fear. You can do this!