Caregiver needed stem cell transplant while at Mayo in Rochester

Hi Lori,
This is my 3rd visit to Mayo. Last visit over a year ago, my condition has worsened. So we'll see what Drs say.
Ideas of questions to ask would be helpful.

That’s awesome! I’m so happy you have a friend who can be with you and your sisters. I think you’ll be very happy with your meeting with your transplant doctor. The team at Mayo is very thorough, they listen and take their time with you. Like I said, it’s my home away from home. My doctor and I have an amazing rapport and I feel more like a colleague than a patient.
There is this underlying feeling of calmness and hope when you walk through the buildings at Mayo. The buildings are all connected and it’s super easy to get around. If you need to go from one building to another, it’s easiest to be on the S level as there is no break in the floor plan. So it’s contiguous from Mayo, Gonda, Eisenberg, Methodist, etc. Every thing is well marked with easy directions. There’s an overabundance of volunteers in blue jackets to help you in any way they can.

Do you have any specific questions about your visit coming up?

Hi Lori,
I had my appt on June 5th. Both Drs want me to wait & I don't really understand why. The literature says do sct when young & healthy. I have researched the risks, & I still want to proceed. I'm surviving on very low hemoglobin 6.3 to 7.8. This is not quality of life I want.
Are there key things I can say to them to proceed???
Dr mentioned if I develop another mutation they would go forward.
I have virtual visits in August with transplant & MPN specialist.

Hi Bev, Having low hemoglobin numbers can really leave you feeling like a limp dishrag…pretty much rung out. I know how awful it feels and you’d surely like to return to a level of normal energy.

I can only speculate as to why both doctors feel this isn’t the time to proceed with stem cell transplant at this time. Transplants are often the last resort after lower level options of treatment have been exhausted. An allogenic transplant, with cells from a donor, comes with its own set of risks and potential chronic issues. It’s not done capriciously because it’s an arduous process. And I can understand your logic of having this done when you’re younger and healthier. If it helps any, I was 65 at the time and did fine…and that’s after several months of intensive chemo. I mentor patients at my local cancer clinic who have AML and require a SCT. Two people I’m working with currently is a man who is 75 and the female patient is 69. They both have gotten through the worst of it now and recovering. Still fatigued but the blood numbers are starting to climb and things look encouraging.

I don’t think we’ve discussed your diagnosis but I see that you’re meeting with a Myeloproliferative neoplasm specialist along with a transplant doctor. MPN is a rather general category for blood disorders where the marrow isn’t producing enough healthy cells: Either red, white or platelets. There are several types and different blood components affected. At this point it may be that your doctors are looking at this disease in its early stage and aren’t able to predict where it’s going yet. So it’s understandable that they might not be recommending the SCT until they know. If/when a specific mutation is identified, then that would be helpful for determining the course of treatment. Does that make sense? And of course, if this continues to proliferate it may influence their decision to go ahead sooner.

I trust my team at Mayo Rochester implicitly. They are the best in the world at what they do and you have the same team…not necessarily my doctor but they share the support BMT teams. So honestly, if you have two Mayo doctors telling you you’re not ready yet, I’d go with their direction. Though I admit I am a bit biased. ☺️

Are your WBC and platelets involved too or just your red cells? Have you been treated with any medications such as hydroxyurea?
Have you had any blood transfusions?

GM Lori
My diagnosis is myelofibrosis. I have 2 mutations, CALR & another one. I do not make enough red blood cells, my wbc is low due to oral chemo drugs I'm on. I've had numerous transfusions & thus my ferritin is very high & in my liver. I've had 5 Bmb.
My health has declined in past year.
I tell people I feel like a wet noodle. I also deal with chronic diarrhea & take drugs for it to no avail. which makes it hard to go places, I get out & for, but gotta know where bathroom is.

Hi Bev, Having low hemoglobin numbers can really leave you feeling like a limp dishrag…pretty much rung out. I know how awful it feels and you’d surely like to return to a level of normal energy.

I can only speculate as to why both doctors feel this isn’t the time to proceed with stem cell transplant at this time. Transplants are often the last resort after lower level options of treatment have been exhausted. An allogenic transplant, with cells from a donor, comes with its own set of risks and potential chronic issues. It’s not done capriciously because it’s an arduous process. And I can understand your logic of having this done when you’re younger and healthier. If it helps any, I was 65 at the time and did fine…and that’s after several months of intensive chemo. I mentor patients at my local cancer clinic who have AML and require a SCT. Two people I’m working with currently is a man who is 75 and the female patient is 69. They both have gotten through the worst of it now and recovering. Still fatigued but the blood numbers are starting to climb and things look encouraging.

I don’t think we’ve discussed your diagnosis but I see that you’re meeting with a Myeloproliferative neoplasm specialist along with a transplant doctor. MPN is a rather general category for blood disorders where the marrow isn’t producing enough healthy cells: Either red, white or platelets. There are several types and different blood components affected. At this point it may be that your doctors are looking at this disease in its early stage and aren’t able to predict where it’s going yet. So it’s understandable that they might not be recommending the SCT until they know. If/when a specific mutation is identified, then that would be helpful for determining the course of treatment. Does that make sense? And of course, if this continues to proliferate it may influence their decision to go ahead sooner.

I trust my team at Mayo Rochester implicitly. They are the best in the world at what they do and you have the same team…not necessarily my doctor but they share the support BMT teams. So honestly, if you have two Mayo doctors telling you you’re not ready yet, I’d go with their direction. Though I admit I am a bit biased. ☺️

Are your WBC and platelets involved too or just your red cells? Have you been treated with any medications such as hydroxyurea?
Have you had any blood transfusions?

Hi Lori
I had virtual appts w/ transplant Dr & he gave me the go ahead with transplant. possibly in 2 months.
Did you receive any financial assistance from organizations to help with out of pocket medical costs?
I meet with social worker on Friday afternoon. virtually.

Hi Beverly. Congratulations on your go-ahead for transplant! Two months will go by quickly and you’ll most likely be involved in pre-transplant activities before that.

I didn’t have financial assistance, the transplant was paid for through my Medicare provider, Network Health.
They also would have paid up to $10,000 for lodging if I had the transplant in my home state. My husband and I were pretty insistent on Mayo so we ended up paying for lodging.
The social worker’s at Mayo are very helpful with financial ideas, lodging, etc., and of course we have great resources right here in the forum when you’re ready for lodging, what to bring, etc.
Keep me posted, ok?

Hi Beverly. Congratulations on your go-ahead for transplant! Two months will go by quickly and you’ll most likely be involved in pre-transplant activities before that.

I didn’t have financial assistance, the transplant was paid for through my Medicare provider, Network Health.
They also would have paid up to $10,000 for lodging if I had the transplant in my home state. My husband and I were pretty insistent on Mayo so we ended up paying for lodging.
The social worker’s at Mayo are very helpful with financial ideas, lodging, etc., and of course we have great resources right here in the forum when you’re ready for lodging, what to bring, etc.
Keep me posted, ok?