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Stem cell transplant

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Has anyone completed a stem cell transplant recently? I tried searching the board, but am getting old posts. 

I have Double Hit Large B Cell Lymphoma and just finished with what I hope is my last round of Hyper-CVAD (3 rounds of cycles A & B). I am scheduled for a PET scan & BMB in a few weeks. If everything's good I will continue on with a stem cell transplant @ Dana Farber. 

Just wondering what to expect? I know this will be the hardest part of my treatment so far, but also that I am nearing the finish line.

Thanks for any help and suggestions!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

I recall your picture well, cat.  I'm sorry you are having this current difficulty. Dana Farber is one of the very best.

Several of the regulars here have done SCT in recent years and I know they will write soon, but the holder of all world records is of course Po. Get on it Po, my friend.

max

 

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catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Yes that is an old picture from 2013, but a favorite of mine :) Hope you are doing well!

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi catwink22,

I had primary central nervous system lymphoma (PCNSL) in 2012 at the age of 68. I got autologous SCT. After, I was weak and got an infection that was cured with antibiotics. I had a bad stomach for 2 - 3 months. It took about 6 months to fully regain strength.

Now I am cancer free since 4 1/2 years, quite well, strong, and fit. The only remaining problem is a very slight neuropathy, a little numbness of my feet which does not bother me at all.

Good luck!

Sten

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Sten! 

Thank you for your reply! I will also have an autologous transplant. I was told I will get fevers & probably need transfusions so I am expecting those bumps. It's wonderful to know that it was successful for you! That gives me hope too.

Wish you continued great health!

Cat

po18guy
Posts: 994
Joined: Nov 2011

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)

         

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Po you are the true meaning of survivor! So inspiring! 

My initial consultation recommended the allogeneic transplant with my brother as the donor, but a second opinion @ Dana Farber felt the risks were too high at this time and my own cells would be best.  Of course this could all change depending on how the PET & BMB results come back.

If this SCT doesn't hold off the Lymphoma, I can go back into treatment and as long as I go into remission I can have the allogeniec transplant, but if that fails there are no further options.

Such decisions we are faced with!

Thanks for sharing your story, I hope you find continued healing & strength.

Cat

po18guy
Posts: 994
Joined: Nov 2011

You are close to several excellent transplant centers, and opinons regarding the need for, and timing of transpants can vary substantially. You might consider a second opinion on transplant, as well as the type of transplant. ALWAYS remember that new options are arriving constantly. In the course of my jounrney, it is those unseen, even unforseeable options that have perpetuated my life. An autologous transplant was not seriously considered in my case, due to the chemo-refractory nature, and multi-relapse, not to mention the mutation into two sub-types. So, an allogeneic may be your best option. Yet, in a worst-case scenario, even that does not preclude future conventional or immunotherapy afterward. Just do not lose hope. 

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

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

 

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Thank you Paella! That information is so very helpful! I will be inpatient & was told 3 weeks for total stay. Thankfully (or not?) I have gained about 40 lbs since I started chemo from all the steroids & what I call "self medicating with food"! 

I have had the Neupagen shots & stem cells collected & I did take the Claritin (see my post about iced tea).

I guess my biggest concern is the bone marrow killing chemo. I have handled a very strong chemo regime (Hyper-CVAD) fairly well, but this seems like a whole different ball game.

Thanks for the encouragement!

Wish you continued healing and good health!

Cat

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

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

 

 

 

po18guy
Posts: 994
Joined: Nov 2011

Thanks for the reminder, Sal! I ate out of a sense of duty. Zero appetite. To jump start my appetite, I received Marinol for a few days, and it worked. I found something on the menu that I liked and I ate the heck out of it. Cream of wheat in the morning and fish in the evening. Nutrition - any nutrition - is better than none, even though they show you this nutritionally correct pie chart that you should always follow. Right. They will push you to exercise, and that is good for you, but you will feel only like breathing and vegging out at times.

I hate swallowing pills. Never had an easy time with it. One of the nurses told me to drink something thick, like a milkshake or fruit smoothie, as we use different muscles to swallow thicker fluids. It worked and the handsful of pills went down! I drank two or sometimes three Odwalla mango PROTEIN smoothies daily, as they amounted to my daily requirement for protein by themselves. Our stem cell engraftment and marrow production are heavily dependent upon us getting enough protein, so the protein smoothies were a perfect solution for two problems.

The worst days, if you have any nausea, can be helped by Zofran and Ativan. A side effect of Ativan is temporary amnesia, so you may not remember the worst of days. As to conditioning, I had Cyclofosfamide and Fludarabine at about 10X normal dosing plus total body irradiation. The mega-doses are for a short period, so you do not develop the chronic chemotherapy side effects. Imediately after the transpant, I again received Cyclofosfamide plus Mesna, as well as the immunosuppressant drugs Tactrolimus and M-M-F (Mycofenolate mofetil).

Easy? No. Necessary? Yes. Doable? Yes.    

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Sharon!

Thank you for sharing your story! It's a huge comfort to know that another woman has made it through this difficult procedure. I have met several men, but was beginning to think maybe women didn't do so well? You are truly an inspiration! You have given me more confidence to do this. I wish you best of luck on your CT scan & continued healing!

Cat

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

Bee1968's picture
Bee1968
Posts: 9
Joined: May 2017

My collection was done a year ago.  Twice now I've geared up my body and mind for transplant then something from my tests calls things to a halt. First halt was my lung function being too low and second time was Creatinine being too high.  Both times I got very down afterwards but within a week bounced back.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

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.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Please share what develops in your treatment plan, cat.

max

Bee1968's picture
Bee1968
Posts: 9
Joined: May 2017

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!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

I loved your posts Bee....thank you.

max

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Thanks Bee. I hope you are getting closer to your transplant. The anxiety has lessened for me, the power of prayer! I will pray for you also!

Cat

po18guy
Posts: 994
Joined: Nov 2011

If you have a particular world view, belief system, philosophy or religion, now is the time to dive into it. All of them deal with the unavoidable human experiences of sickness and death. If you are not receiving the comfort you seek, try another set of beliefs. Standing by there is always a selection of anti-anxiety medications that can be used, either short or long term. Personally, I am a Catholic boy and my faith prepared me for and sustained through abd beyond the transplant. But, believe in something! It is those who have no particular beliefs that suffer the most.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

I was raised Protestant, but have sort of developed my own spiritual beliefs. I believe in the power of prayer but I have seen several friends taken way too early in my opinion. I am responsible for most of my 9 year old granddaughter's care. My daughter works 2nd shift and I am very worried about them. They live with me, & my daughter can't afford this house alone. My ex-husband (her dad) lives 2 hours away & my family is 3 states away. They would really be put in a bad position & I don't know who would care for my granddaughter if the worst were to happen. Gives me a BIG reason to fight, but there is so much out of my control. 

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

Focus on yourself and getting better. Your daughter, unless she is seriously handicapped, should be helping you and not vice versa. Your daughter has a father and probably a stepmother. Your granddaughter has a father and I assume paternal grandparents. Lots of help. Let them help carry the burden. I worked two fulltime jobs for years. She can do the same. Ultimately we are all responsible for ourselves. That includes you. Focus on yourself and getting better so you will be there for your great-grandaughter! I think you will be. Hard times ahead but hey, you are obviously strong and resilient. CatWink counts too! Put her first for now! Help others later.

as they say on airlines before taking off " if the oxygen masks deploy, secure your own mask before assisting others"

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Unfortunately my daughter does not have all the support you mentioned. There is no stepmother (All the women he dated were smarter than me lol!). Her husband is disabled with a back injury after a car accident and her in-laws have passed. I know she will make it, because I taught her to be strong, but no one wants to think of their children suffering and struggling. 

The anxiety has lessened, I don't know why? Maybe I was extremely tired at the time or just realized it's out of my hands and worrying isn't going to do anything except take the joy from my days.

Cheers to better days!

Cat

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

I guess I stuck my foot in my mouth. Its just that I know so many millenials living with their parents. You have a very lovely grand daughter. It will all work out. Still it is wise to focus on getting yourself better. Best of luck!

po18guy
Posts: 994
Joined: Nov 2011

A stem cell transplant is an opportunity to live. Hard to find a major downside there. Does it involve a potential major change in your life? Yes, but those changes can actually be for the better. You will experience things that will broaden you horizons. Caring people whom you had no idea even existed. You have a mom's worry, but your daughter will not be left in the care of wolves! Anticipate being pleasantly surprised at who steps up to the plate when needed. I remember always that I have to be alive to have complaints.  

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

I love complaining! It means I'm alive and aware! A stem cell transplant is eye opening, but if I am ever in that situation again I would do it in a heart beat.  Three weeks or three months is nothing compared to life! 

 

 

 

po18guy
Posts: 994
Joined: Nov 2011

There ya' go, Sal! Decision time for me was easy: Doctor: "We are out of lymphoma drugs. When it relapses again, we may not be able to stop it."

Easy.

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