Anyone have bone marrow transplant for aplastic anemia?

Hi @mentallyill, I hope you’ll be able to clarify this for me a little more. Did you mean you were diagnosed with Aplastic Anemia and will require a bone marrow transplant?

Aplastic Anemia is a condition where your bone marrow stops producing enough new blood cells. Treatments for aplastic anemia, which will depend on the severity of your condition and your age, might include observation, blood transfusions, medications, or a bone marrow transplant.
This is what Mayo Clinic has to say about aplastic anemia, how it’s diagnosed and treated: https://www.mayoclinic.org/diseases-conditions/aplastic-anemia/symptoms-causes/syc-20355015

There’s a really encouraging blog article on our Mayo Clinic site with a mother of seven who had Aplastic Anemia and underwent a transplant which has corrected her condition. https://connect.mayoclinic.org/blog/hematology/newsfeed-post/bone-marrow-transplant-is-answer-for-mom-of-seven-battling-aplastic-anemia-1/

I’ve also had a bone marrow transplant and now in remission from Acute Myeloid Leukemia. It is a difficult journey but well worth the second chance at life.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

Being newly diagnosed, have you received any treatments so far? What has your hematologist discussed with you?

@loribmt yup iam diagnosed with aplastic but iam from Pakistan and the bone marrow transplant doesn't have any surety to be successful iam really feeling afraid and sometimes even i fall down and start srilling on ground. My family doesn’t know about my cancer
Can you suggest me anything

@loribmt can you tell meh about the payment how much it cost bone marrow transplant iam not financially good but ill try my best

Hi @mentallyill, Not telling your family is making this particularly difficult for you. My first suggestion is to let your family know you have a blood disorder.
Aplastic Anemia is not leukemia. It is not cancer because there are no malignant cells present.
So I don’t know if that will help you feel a little less frightened about your situation. But I do know that you’ll feel much better when you share this with your family. You’ll need support to get through your journey and they will want to be there for you! If you’re not telling them because you don’t want anyone to be upset, I can tell you that they will be hurt and more upset if you hold your illness from them.

I found a website that does a fairly good job at describing the difference between your aplastic anemia and leukemia.
https://www.differencebetween.com/difference-between-aplastic-anemia-and-vs-leukemia/#:~:text=Leukemia%20is%20the%20accumulation%20of%20abnormal%20malignant%20monoclonal,the%20pancytopenia%20with%20hypercellularity%20of%20the%20bone%20marrow.

According to Cleveland Clinic, another highly reputable hospital center in the US, a bone marrow transplant is highly effective in treating your condition. Here is an excerpt from their site. I’ve also posted the link to their site below.

“ Is there a treatment that cures aplastic anemia?

A bone marrow transplant is the only cure for aplastic anemia. Bone marrow transplants are also called stem cell transplants. A transplant is the preferred treatment for severe aplastic anemia.”

There is hope! It’s important that you get to a reputable medical institution to guide you to the treatment you need. I’m really sorry that I’m not able to predict the potential cost of your transplant. Being in the USA, our medical system is much different than yours in Pakistan.

But, if this option has been discussed with you by your doctors, then they will be the best source for the cost involved and who might be eligible to be a donor for the stem cells. Do you have siblings?

@loribmt thanks first of all im gonna tell my family about thankyou very much for talking 😊

I am curious as well about the transplant. My husband has MDS (Myelodysplastic syndrome) another bone marrow cancer. He has had the chemo and then hospitalized for 3 wks for infection for which they never found the source. He is in remission so the chemo did it’s job but the hospitalization did a number on his body both physically and mentally. They have given us three options for the next step. #1 two doses of the heavy chemo followed by transplant #2 5 doses of gentle chemo followed by 14 days of pills and repeat every 4-6 wks or #3 pills indefinitely. He is so afraid of hospitalization again that he doesn’t want to have transplant (the only cure per say) because it would require at least a month in hospital afterwards. Need responses of peoples transplant experiences. This is a man that worked out 4-5 x per week prior diagnosis and treatment. Oh for the MGUS people he was told he must have had it for at least 5 years before the MDS diagnosis. His white count had been low for years but all of a sudden just bottomed out and then biopsy done.

Hi @jrwilli1, if it’s any incentive at all for your husband to follow through with a bone marrow transplant, I met a wonderful woman when I was having my transplant. She had MDS and is now fully recovered after her stem cell transplant. We both went through this journey at the same time and became fast friends along with our husbands. She and I, more than three years later are still good friends and write each other frequently. Without that life saving procedure, neither she nor I would be alive to tell our stories.

I am sorry to hear that your husband had horrible experience in the hospital with that unexplained infection. Those infections can happen with the snap of a finger because of his weakened immune system. And especially after chemo. We hit a point called, nadir, where all of our blood counts drop critically low. Our defenses are at zero at that time and we can get unexplained infections and fevers. Neutropenic fevers, and we end up in the hospital on antibiotics until the crisis passes. That may have been what happened to your husband. I went through that crash several times before my transplant.

After transplant, I gained ground steadily and now I’m healthy, active and living a very normal life. No more chemo, no more infections, no more medications! (Except vitamins D3 and calcium). He would need to be on meds for at least a year following the transplant but that is a really small trade off for a second chance at life!
Depending on the factors of his disease sometimes a patient can use their own stem cells which requires a less lengthy recovery and no rejection. My stem cells came from an anonymous donor who matched my biomarkers. That gave me an entirely new immune system. I’m not sure which treatment your husband would have either an allogenic transplant with donor cells or autologous meaning his own cells.

I really encourage your husband to give this another thought. It isn’t an easy journey but it is worth the life we receive on the other side of transplant. I have several links I’d like you to read and share with your husband.

Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

And this recent blog piece about being a mentor to another young woman going through her BMT.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

I know there’s a tough decision ahead for him to make and there is a time commitment with the procedure. I had to remain near Mayo for 100 days. But not actually in the hospital for that length of time. If it’s his own cells, then the stay is shorter. Are you near a large hospital where the transplant would take place? Would he be willing to travel to one of the Mayo Campuses for his transplant?

Hi, @mentallyill, I just wanted to check in with you to see if you’ve shared your diagnosis with your family. I hope you’ve told them so that they can help support you mentally and physically through your journey. Are you feeling a little less frightened now?

Thank you replying. Yes he did have a severe crisis episode and because of that he is so afraid of chemo again and having to go to the hospital for at least that month after transplant. Right now we go back to drs in Wednesday to further discuss options. He has gotten so much stronger. I did read the articles and informed him as well which did start a very needed discussion again. Yes I seem to be pushing for transplant for that second chance at life. It was so good to hear of your success and I’ll keep praying he is guided on what is best for him. Thanks again.

I can’t fault your husband for not wanting to face chemo again. It’s a powerful medication and not without side effects. But it’s a means to get the cancer under control. It looks as though he was given 3 options for followup treatment: #1- 2 doses of the heavy chemo (referred to as Conditioning) followed by transplant,
#2- 5 doses of gentle chemo followed by 14 days of pills and repeat every 4-6 wks
#3 pills indefinitely.
It’s positive to hear your husband is growing stronger after what he went through. That’s expected as his blood numbers climb back to normal levels and his cancerous cell load has diminished. But he’ll need to start treatment soon. I’ll be honest and tell you that with every round of chemo he has, there will side effects which will plummet those numbers again and have a person feeling mighty low until the blood cells regenerate again.
The advantage with the transplant is once that’s done, there’s no more chemo. It is, however, a very arduous journey physically and if he isn’t mentally prepared it can be difficult.

I wonder if it’s possible that your husband takes option 3 with the pills indefinitely. You could ask his hematologist oncologist if your husband could try meds for a few months to see if they keep him in remission. If they don’t, would it then be possible to consider the transplant or option 2 with ‘light’ chemo and med cycle.

This is a huge decision for both of you and I know you want your partner around for many more years to come. And he can do that! From what you’ve said previously, this guy was in great physical shape and took good care of himself. That is an advantage for him to get through this journey. If you can encourage him to start walking and working out a little bit each day, that will also help bolster his confidence. He doesn’t have to be confined by his disease!

If it’s not too personal, what’s your husband’s age? What does he enjoy doing?