PET scan in Aplastic Anemia

[Joan C]

Hello,

My name is Joan and I was diagnosed with Aplastic Anemia and PNH in November of 2016. In December of the same year I underwent ATG treatment and am currently taking cyclosporine treatment.

I have not been transfusion dependent since February 2017, and my doctor has been tapering my cyclosporine starting in May 2017. He says I’m headed for remission for the time being.

For the most part, I do feel improved health with one exception: I have had pain in my lower back, pelvic, hips and legs since my first bone marrow biopsy. From this pain I also get extreme muscle spasms, primarily at night, when I try to re-position myself to try to get comfortable. It hurts terribly to lie on my back or either side. My sleep is constantly disturbed. I have pain throughout the day and sometimes experience muscle spasms as well, though not as often as at night.

I bring this up to my health care team during every visit and each time I’m told it’s unrelated to the AA. Because these symptoms have worsened, my PCP prescribed pain medication and muscle relaxants. These have been mostly ineffective.

In July 2017, after an episode of such unbearable pain, I requested my PCP refer me for an MRI to look for the cause. The results showed heterogeneous patchy foci scattered throughout the vertebral bodies. The largest and most discrete lesion involving T11, T12, L2-L5 and upper sacrum. My PCP then ordered an urgent PET scan and these results were: Numerous hypermetabolic bone lesions are seen distributed throughout the predominantly axial skeleton. Lesions are seen within the sacrum, iliac bones, multiple vertebral bodies and right femur.

These findings have led to another BM biopsy and other various work ups to determine diagnosis. My Oncology team, so far, have not reached a conclusion and suggest a referral to an Ortho Surgeon for a biopsy of one of the lesions seen in my spine.

Meanwhile, I have done some research and found an article entitled F-fluorodeoxyglucose PET/CT in aplastic anemia: a literature review and the potential of computational approach in a 2014 Future Medicine Ltd., an online Clinical Practice newsletter (I believe) that proposed using (FDG) PET/CT as a noninvasive evaluation of BM extension and metabolism in different AA stages. The results of a small controlled study showed “The presence of several hypermetabolic uptake areas was related to BM hypo/aplasia, while homogeneous, low grade FDG uptake was observed in patients in clinical remission.”

One of my doctors, after reviewing my scans said: “Although we don’t have any other AA patients to compare to (because none have had a PET scan) that these lesions could represent areas where bone, void of bone marrow, could be in a stage of regeneration.” Her reason was because the uptake seen in my scans were low whereas if it was cancerous, it would likely emit higher.

My question is – has anyone else with AA ever had a PET scan revealing findings similar to mine? If so, what was the outcome?

[Callie]

Joan - I am so sorry you're experiencing this pain. While I have no input or assistance to provide, I am extremely curious as to what you find out. This sounds very similar to what my dad (Bailie on the forum) increasingly experienced from October to July. His doctors, too, couldn't provide an explanation or reason for the pain and it became excruciating. I wish you the very best!

[Joan C]

Callie,

Thank you for your reply and I'm so sorry for your loss.

I will try to post the results when I have them. I see my oncologist on 9/6/17 to go over the BM studies and discuss the next step...referral to Ortho for a biopsy. Until then, just thinking positive thoughts.

Best Regards,

Joan

[Hopeful]

Hi Joan,

I have not had a PET scan but maybe my experiences can help you.

There have been a few things that have caused me terrible bone/joint pain through the years.

The first is tapering cyclosporine! When I was tapering cyclosporine it would exasperate any future-arthritis issues in my body. For me, it was my knees and feet. The pain was so bad that I had trouble walking and thought I would never be able to do so normally again. When I stopped tapering, the pain went away. Others on this forum have experienced this same thing when tapering cyclosporine.

The second thing that has caused me great bone pain was when my marrow was in a big state of regrowth. Usually after these episodes, I would see a jump in one of my counts. I am guessing this is analogous to painful growth spurts in healthy teens, increased blasts in leukemia patients, or bone pain experienced by those taking WBC growth hormones. However, in AA patients the bone pain is a good sign.

Another thing that have caused me bone/muscle pain (it is hard to tell which when you are experiencing it) is magnesium deficiency. Cyclosporine is notorious for depleting magnesium. So have yours checked and supplement if necessary.

Finally, if your iron stores are empty (which would show up in your BMB) this can cause restless legs syndrome when you try to sleep. It is actually pretty painful, but this is probably not your situation, as your pain is in your back. I am just throwing this out there as another source of bone/muscle pain.

You are tapering off cyclosporine pretty early. Have your counts fully normalized and been plateaued for months? The latest thinking is to stay on cyclosporine for at least a year to allow time for your marrow to regenerate. I am curious who you are seeing, as I live fairly close to you. Some doctors are very eager to taper patients off cyclosporine, and that is not always a good thing if you are tolerating it and your counts are still heading up!

[Joan C]

Hopeful,

I appreciate you sharing all the experiences you have had. It is helpful in trying to make sense of what I am experiencing.

Tapering of cyclosporine may very well be the cause. A member of my care team mentioned that some patients experience bone pain while on the medication but didn't relate it to the tapering. She suggested taking Claritin. She doesn't know why it works with some patients, but it has. I tried it, but I didn't notice any difference.

Currently my counts are: RBC: 2.36; WBC: 2.6; Hemoglobin: 9.0; Platelet: 94. I have been steady with these counts, fluctuating slightly, for over six months with no signs of dramatic dropping (or increasing) as a result of the tapering.

I see an alternative/functional health care provider as part of my healing team. He did a Tissue Mineral Analysis on me after my treatment which showed that I was very deficient in Magnesium (as you mentioned) and Calcium levels along with other low metabolic patterns, i.e., Iron stores (as you also mentioned). He is treating me with supplements that are proving to be most effective. I have had fewer muscle spasms in the last few weeks.

Also, I attribute my steady counts and quick recovery from the ATG treatment to the autoimmune, nutrient dense food protocol diet I have been on since my diagnosis. It really helps with fatigue, heart palpitations, swelling, and inflammation.

My Western Medical Team is with the UC Davis Cancer Center in Sacramento. As a teaching facility, they may have different, innovative ideas about treatment. My Oncologist is Dr. Brian A. Jonas, Assistant Professor in the division of Hematology and Oncology. So far, he's been straight forward with me. It has only been recently, since my PET scan, that he has sort of treated me like a mushroom. We plan to have a thorough discussion on September 6, 2017, to go over the new test results. Until then he says he's looking for answers with a team of other doctors and plans to refer me to an Orthopedic surgeon for another biopsy.

My hope is that my pain and the lesions on my spine, pelvic, and hips are due to bone marrow regeneration. That is why I put the question out there. I am looking in areas my doctors do not access, such as this forum, to find as much information as I can from the experiences of fellow patients so that I can be the best advocate for myself. The medical community, with their terminology that is sometimes hard to understand, leaves me confused as to what they are telling me and what they are not.

Thank you for your help, I am very grateful.

Best regards,

Joan

[Hopeful]

Hi Joan,

I am a big fan of UC Davis I like their team approach for difficult cases.

If the PET scans are indicative of your marrow actively regenerating, I would ask your doctor whether you should taper all the way off cyclosporine. What is your taper schedule? Be very wary of signs of a relapse!

I think that the marrow remains in a very fragile state for some time, depending on the number/state of your remaining stem cells. There is still a colony of rogue T-cells that weren't killed off with the ATG, even if you respond quickly. (ATG is not a cure.) Cyclosporine helps your marrow keep these cells in check until your marrow is strong enough to fight the fight on its own.

How is your cellularity?