Stem Cell Transplant Decision & Success

@jeffhampton
I want to add a comment that I stopped focusing on hemoglobin and RBC’s levels, mine are still not up to normal 2.5 years post transplant, however, physically my performance is better than expected (hiking, rowing, etc). I attribute this to the “young” bone marrow from the transplant producing hemoglobin with better ability to bind oxygen. Check your VO2 levels, mine are consistently registering in the superior range for someone several decades younger than me. That’s the new normal for me and that’s cool. I’m sorry about your physical pain but maybe this aids the mind that you’re better than the blood numbers show. Stay positive friend.

@g4c I greatly appreciate you sharing. It is always nice to meet someone who has been through similar challenges. My VO2 levels are excellent.

@jeffhampton
Absolutely! I didn’t know that anyone could even survive this, much less thrive until I found Lori. She gave me hope and a vision of a future. Eternally grateful. Based on your past athleticism, I know that you have a strong will to forge a bright future as well.

@loribmt

Hi Lori and team, my main question at this time - when does it start getting better? I am 9 months post-transplant with fatigue keeps getting worse. Still getting dizzy, hazy, hard to stand and walk, cannot do simple tasks without going out of breath. Is this a typical recovery at 9 months? Just trying to get a realistic projection for how long I will need to "stick it out". Any input is much appreciated.

@jeffhampton What medications are you currently taking and for how long? For example, all anti-hypertensive drugs in addition to controlling high blood pressure, suppress production of red and white blood cells. Also, fatigue, muscle and bone aches are known side effects for some drugs. Based on my experience, blood counts may be going down after 2-3 months of use with certain medications. And fatigue may be getting much worse, as well as bone pain and neuropathy. You can review your medications product inserts online to see which ones may have these side effects and discuss it with your doctor. There may be other clinical reasons as well. Hope, this helps.

@altabiznet I’m taking a lot less medications today than 3-4 months ago, thankfully.

Dapsone, bupropion, levothyroxine, valacyclovir, fluconazol, lisinopril and pantoprazole. I have had many discussions about medication with the doctors but there are times that I wonder if they even care.

I had an appointment yesterday at Moffit Cancer Center and my counts were much better than a few weeks ago. It seems to me that one of the recent doctors I’ve visited may not have accurate testing. The results certainly make me wonder.

The bone pain comes and goes. It is usually more prevalent when I’m tired later in the day.

I really appreciate the advice and will let you know how it’s going.

@jeffhampton Thank you for your response. The medications list looks familiar. It is great that your blood counts are getting better as they should be. If you could share how much time post-transplant you are and your level of daily activities: can you do light cooking, for how long can you walk without a rest inside and outside, do you get dizzy and short of breath, do you go out, can you drive a car, can you do light exercise, do you have difficulty concentrating on the computer and/or watching TV, and any other detail you would like to share in terms of progress in recovery- it would be greatly appreciated.

Hi @altabiznet, sorry for the delay in responding. I’m in the midst of traveling and was offline all day. Oh golly, I’m so sorry to hear you’re still having such a challenging time with recovery from your BMT.

After reading through the discussions in Connect, I’m sure you’re noticing that we all tend to have a litany of different stories about recovery. I’m post +6 years, so it’s been quite a while and I don’t recall the exact time-frame of the fatigue I experienced. Though I know the first 2 months were the worst. After that, there was a slow but steady gain of strength and stamina as the months passed.

I can’t say if what you’re experiencing is atypical or not. It’s certainly a concern and frustration for you and hard not to feel discouraged. Recovery from a BMT can be one of 3 leaps forward and then 2 steps back but you’d like to feel you’re gaining on this.
Medications can be cause fatigue as you mentioned to @jeffhampton. But there can also be side effects from the transplant itself due to the chemotherapy and/or gvhd. I’m assuming your transplant doctor and team are aware of your worsening symptoms. What have they suggested for you?
What are your blood results showing? Any decrease in hemoglobin? Have you had any heart related tests or pulmonary function tests?

@loribmt
Hi Lori, thank you for getting back to me. My BMT team suggested that for my type of autologous transplant (no GVHD) it may take 12 months post-transplant before the cells that were removed during transplant will start recovering, and overall recovery was projected for 1.5 years. I am at 9 months now. My concern is that things are not getting any better for the past 6 months. The team is evasive with their responses. They think, I have all signs of anemia, but no iron infusions are indicated as my blood counts are not critical. No solution, except for time. I started taking iron supplements. No change in condition so far. Transferrin saturation was also on the lower end. No heart or lung related conditions. My medications are reduced by now as well. So far, no real explanation for this degree of dizziness and fatigue, except if this is a part of the recovery process (anemia, low Hb, and tissue hypoxia?). The team is evasive about when things should start getting better. Learning from other patients' experiences is helpful to understand where I stand with recovery and what to expect in the future. I see from other patients' posts that things may get worse at 6- and 9-months post-transplant with no solutions from the treatment teams. You have successfully recovered which is giving us all a hope. If you remember, where you dizzy when walking and/or talking during the first 12 months? Did you have anemia and for how long? Did you take iron, Folate, or any other supplements that helped? When did you start cooking, going out, driving a car? Any insights regarding milestones in getting back to normal life are appreciated.

@ Good morning @altabiznet. Finally getting a chance to catch up with my messages on Connect after being away for a few days. After reading your last reply, I realize now that you had an ASCT which is an autologous stem cell transplant…using your own cells. My cells came from an unrelated donor, referred to as an allogeneic bone marrow transplant. While there are a few shared procedures and protocols, the differences between the two transplants makes it difficult to compare recovery stories…they’re not apples to apples.

You haven’t mentioned what your diagnosis was that required you to need the ASCT. But you most likely went through some form of treatment beforehand to get you to a state of remission. Your doctor suggested the transplant as a means to help hold you in remission and potential cure. Before the transplant, you were able to donate your own stem cells, which were collected and frozen to be able to be returned to you after you went through the pre-conditioning chemo that would kill off any remaining cancer cells in your blood and clean out your bone marrow.
Stem cells are immature cells which mature into all the sorts of blood cells, white, red, platelets and even more stem cells. After the transplant the newly re-installed stem cells then have the Herculean task of entering the clean bone marrow, setting up housekeeping to begin churning out millions of cells every minute in an effort to replenish levels to normal. Depending on the underlying disease and treatment, the cancer load was greatly reduced or maybe eradicated. This, along with the newly transplanted cells, allows the damaged bone marrow to recover and the new blood cells produced by the stem cells the chance to flourish. It can take many months for all the ‘systems’ to be up and running fully and everyone recovers at their own pace…some taking longer than others.

It is troubling this far out that you’re feeling worse over time with fatigue, dizziness and experiencing anemia. It’s pretty frustrating when your SCT team isn’t helping to address the problem. Fatigue associated with anemia can be so debilitating and you want your life back!

Besides the many tests you’ve had, does your team run a liver panel? Have you been checked for possible an auto immune disease or thyroid issues?

I would like you to meet more of our members who have had an ASCT and think this discussion might be a good place to start. It was posted by @justpeachy about her experience with her transplant. Many others have joined in the conversation. Hopefully you’ll get more information comparing apples to apples. ☺️ Feel free to tag any member!

My autologous stem cell transplant journey:
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
I know you’re so frustrated but please don’t give up hope. You have gone through an enormous life altering change. You’re mourning the way of life that you’ve lost since your initial illness and the ASCT. And with the symptoms you’re having, you can’t even find peace with a new normal. You just want some level of predictability back! I’ve been there and it did take time to find footing on new ground. Each day, take on a little task that you may find rewarding. If you’re not doing any amount of cooking yet, try something simple to give you a sense of accomplishment…even if it’s teensy.

May I ask what your underlying diagnosis was?