Worsening fatigue 9 months post allogeneic Stem Cell Transplant

Good morning, Deb. Wow, I’m really sorry to hear about your worsening fatigue this many months out post SCT. It’s not unusual to have those up and down days from time to time, like you mentioned. Having a couple of those myself with this pervasive and lingering wildfire smoke. But what you’re experiencing doesn’t seem normal.

I wonder…first thing that popped into my mind with your good labs, except for the low ferritin, is iron deficiency without anemia. Ferritin is important in helping the body to store iron…needed to make red blood cells which carry oxygen throughout the blood stream. Labs, such as the hemoglobin reading, aren’t reflecting anemia yet. But you can still be experiencing the heavy fatigue of anemia if the blood cells aren’t rich in oxygen. There are stages to iron deficiency, which can eventually lead to anemia.

Posting a couple of articles for you that I think might be helpful in explaining iron deficiency more succinctly than I can this morning. ☺️

From Good RX:
https://www.goodrx.com/conditions/iron-deficiency/iron-deficiency-without-anemia
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From healthline.com
https://www.healthline.com/health/iron-deficiency-without-anemia
I know you’ll be getting more feedback from our BMT posse so it will be interesting to see what they have to share.

Are you still meds which could be interfering with your iron absorption? Vegetarian diet?

Hi Lori - I am taking an iron pill for iron deficiency without anemia but am not having any positive effect yet - has been a few weeks. They do not want to do iv iron. The only meds I’m still on are tacrolimus (which i stop next week), valacyclovir, famotidine and bactrim. I eat a regular and varied diet.

I am frustrated at myself and frustrated with my team that they weren’t taking my complaints of increasing fatigue seriously for months since I was otherwise technically doing well ; I actually had to ask for the ferritin / iron test. Now they finally have done the additional fatigue tests like thyroid etc but those were normal. I guess this is one more example of how we need to advocate for ourselves because we know our body best and I knew my fatigue was getting worse. Im just so miserable because it’s hard to do anything. I know the transplant teams are primarily focusing on all the potential bad complications of transplant but I do wish there was more education and effort put into helping us get back our quality of life. Thanks for all your words of advice.

Deb, sorry to hear that you have lingering fatigue 9 months post transplant. I had my SCT 9 years ago and had experienced the highs and lows of the recovery. One thing that my doctor recommended was walking. It sounded counterintuitive since I didn’t even have the energy to stand, but I took his advice and started walking 5 minutes at a time. Pretty soon I began adding more minutes to my walks until I reached one hour a day. This was in the dead of winter in Michigan, so I was walking around the furniture in my living room. This really helped me regain my muscles and battle fatigue. You may have a different underlying reason for fatigue, but see if walking will help you!

Hi - thanks for your comment. I actually do walk almost every day from 15-35 minutes. But it has become harder not easier over the past 5 months. My biggest problem isn’t that I can’t do any one thing like a walk, but rather that I’m so exhausted all the time that everything feels hard to do - even just planning to go out to dinner. But thank you for the suggestion.

Hi Deb, I can just feel your frustration with this whole fatigue situation. Not sure how your team missed all of your complaints about increasing fatigue. Usually our BMT teams are all over comments like that.
You touched on an interesting subject about post BMT care. We get so much prep, info, hand holding beforehand and during the process, but survivorship can be a real challenge.
We go from intensive and comprehensive immersion in medical care with our BMT teams to…home and now what?
That’s where Survivorship Education comes into play. Guidance and a plan for life!

My ongoing care involved those discussions but not every clinic is equipped or offers post transplant education in survivorship. I think that may be a good topic for me to start here. I’ll work on that.
In the meantime, a fantastic link for survivorship mentoring, discussions, podcasts, etc. is the National Bone Marrow Transplant Link. You might enjoy some of their podcasts and educational materials.
https://www.nbmtlink.org/
I’d also posted a link in Connect last year: https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

The National Marrow Donor Program has fantastic sources as well this is a link to their survivorship discussions:
https://www.nmdp.org/patients/transplant-support/life-after-transplant/survivorship-program
It’s great that you’re near the end of your Tacro taper. Once you’re off that, you’ll be able to proceed to your vaccinations and then finally off the lingering meds. Which leads me to this thought about the famotidine. It works by changing the pH in your stomach, which can alter your body's ability to absorb the iron. Wonder if this could have anything to do with your low iron level?
Other ways to enhance iron absorption is with drinking citrus juice or foods high in vitamin C at the same time that you eat high-iron foods.

I’m sure this feels incredibly discouraging after all you’ve gone through so far. We’ll be optimistic that the iron supplements will begin to have some impact soon!! ☺️ You didn’t go through all of this to feel like a slug…🐌

Hi Lori, Thank you so much for your suggestions. You and this group have been such a source of comfort and support and I really appreciate it. And lol your slug made me smile.

@deb913

Hi, I am 9 months post SCT for autoimmune condition, and I am going through the same type of ups and downs in my recovery. My fatigue started getting worse at 4 months post-transplant with its worst being around 6-7 months. Even getting up and going to the restroom next to my bedroom was challenging due to extreme fatigue, dizziness, shortness of breath, and palpitations. At 4 months post-transplant I was also diagnosed with heart failure due to transplant related chemotherapy. A combination of Losartan, Metoprolol, and Spironolactone were prescribed. All of these drugs contribute to fatigue and weakness. Walking for 5 to 15 min at a time a couple of times a day was my first step. Diet rich in vitamins B, biotin, and iron was my second step. Also, seeking second opinion with a different cardiologist helped me with getting a list of my medications shorter and doses lower. I was told that post-transplant fatigue may have multiple causes - from anemia due to low iron levels, to deficiency in iron utilization, to arrhythmias caused by chemotherapy, and to system deconditioning due to transplant. Atrial fibrillations, PACs Premature Atrial Contractions, and PVCs Premature Ventricular Contractions are most common types of arrhythmias observed post chemo. I am supposed to stay on medications for 12 months post-transplant. I also use Boost Oxygen inhaler 2-3 time a day to help with tissue hypoxia. After 12 months arrhythmias are supposed to start going away along with fatigue, as my bone marrow will start recovering cells removed by the transplant. Every patient is different, but being reasonable with medications, eating diet rich in iron and vitamins B, and little walking every day should help. For most patients, 12 months is the landmark. The recovery may take another 6-12 months and up to 2 years post-transplant. My doctor asked me to be patient with my recovery process and to "stick it out" by staying home with a caregiver and minimal level of activity until my energy levels get better. Hope, this helps.

Hi Deb, I have the same experience post autologous SCT. I was getting better at 3 months post-transplant, but then fatigue and hypertension started getting worse. My BMT team thought this was not due to the transplant itself, as my blood counts were recovering, but due to other complications. I was referred to cardiology for treatment of hypertension and arrhythmias (post chemo and radiation). The medications were contributing to my fatigue, which got worse at 6 -7 months. I am at 9 months now and still remain extremely fatigued. There are better days, but then it gets worse again. What makes it a little better: diet rich in iron and vitamins. I was also recommended iron as oral supplement in iron bisglycinate form (gentle on stomach), as well as Folate, other B Vitamins, and Vitamin D3. My BMT team suggested that this fatigue may last for up to 12 months, and after that the cells that were removed during the transplant should start recovering. Things should start getting better 12 months post-transplant with additional 6 months+ for recovery. They also suggested physical therapy to start walking again and pulmonary rehab. But both require physical activity that I cannot do yet. No other treatments or therapies were suggested. Please respond how your recovery is going on at this time?

Hi - thank you so much for your comments. It helps so much to know I’m not alone in this. My fatigue had gotten much worse at month 11 because I developed GVHD and had to back on all my original immunosuppressants plus prednisone and more to get the GVHD under control. It’s been 6 weeks on that and I’m starting to feel a little better, I’m also having stomach issues (constipation and general reflux not related to GVHD) so I don’t think I can take iron now but I’ll check. Im now able to walk a bit and am planning to start my pt exercises I was given at month 2 because I feel like I’m back to that point strength wise. Hopefully I’ll see some improvement soon. And not that this is a long term strategy but I was also prescribed adderall extended release 10-20 mg per day which does help give some energy - although it is “fake” energy because it is a stimulant, it does help to be able to do some exercise and exercise will ultimately build muscle and stamina.
Thanks again for you suggestions.