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What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Sep 4 8:39pm | Replies (97)

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Thank you @loribmt

I understand the bmt requires a number of tests before approval for the procedure. What tests are required? I am also wondering about finding a donor, I understand there is a large marrow bank - but would like to consider using one of my children even if it’s not 100% match. Do you know if the match preference is female if the patient is female? I’m also curious if once the prep is done and the new marrow put in - are you encouraged to do anything other than be isolated? Thank you again for your help.

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Replies to "Thank you @loribmt I understand the bmt requires a number of tests before approval for the..."

I know there’s a lot to take in with the prospect of a BMT. It can feel overwhelming, but honestly, once you begin the process, it all just tumbles into place and you take one day at a time.
Talk about over-whelming…I kept the pics of my schedule. There were 25 appointments in 5 days! LOL. When I looked at the portal, my first thought…out loud to my husband was, “What?? Don’t they know I’m a 65 year old woman, recovering from months of chemo? How in the heck…? 😅
Well, in the inimitable style of Mayo, which I like to call being Mayo-naised, all the tests went likety split, like clockwork!! Had plenty of resting time in between. While I was tired at the end of the day, it was invigorating and distracting!
Tests include: Pulmonary function, Muga heart scan, X-ray of chest, sinus X-ray, kidney function test, lumbar puncture, EKG, educational classes and many consults with the BMT team.
For fun, here are the pics of my schedule posted below.
Bummer…just noticed they loaded out of order!

When it comes time for selecting a donor, you can talk to your doctor about the potential for one of your children to be a match. In my case, even though I had a daughter, my doctor wanted a MUD donor…matched, unrelated. He would have used my daughter at last resort. If one of your offspring aren’t able to match, there is an international registry of 40 million + donors in the data bank. Your DNA panel will be run and the paired with whomever has the most appropriate HLA markers match.
It’s not necessary to pair by sex or blood type. My donor was a 20 year old male from the US…we’ve now aged 6 years together quite nicely. My previous blood type was B+ and my donor is O+. I now have his blood type. The HLA protein markers are key to matching.

Your last question about prep and isolation. The conditioning chemo is intended to clear any remaining cancer cells from the marrow and lymph system so that basically, your newly implanted cells will have a squeaky clean environment where they set up housekeeping with your new immune system. It can take about 10 to 20 days for your newly infused cells to engraft into the marrow. Before all that happens and until your immune system matures, you’ll be quite vulnerable to infections…viral, bacterial and fungal. So you’ll be required to wear masks all the time and be on a protocol of meds as a temporary immune system,including multiple antibiotics, an antifungal and an antiviral med, along with an anti-rejection medication, Protonix to protect your stomach and ursodial to protect your liver. This is why you’ll have a personal pharmacist on your team. Don’t panic! This is all temporary until you’re off the anti-rejection med and can start your vaccinations. Generally that starts tapering off around 3 months.

It’s important during the first 100 days to avoid exposure to illness. You’ll have educational classes to help you learn what’s acceptable and what to avoid with people, food prep, sanitation, etc. Phew…huh? You’ll have handouts, reading material, a transplant team who will bend over backwards to make sure you’re comfortable and well taken care of.

I hope this isn’t an overload for you! Please try not to let any of the information intimidate you. GVHD will be mentioned. But even in the 6 years since mine, there are improvements in treatments that greatly reduce the incidences of serious GVHD.

To give you a head start, here is the Caregiver guide from Mayo! Scroll down to Allogenic Stem Cell transplant: https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation

The closer you get to transplant, we can talk more about what to take along for your lengthy stay in Rochester and other logistics. Like I mentioned, Mayo-Rochester is my home away from home and my BMT team, 6 years later, is still is a big part of my extended family as they assured me repeatedly, that “We are ‘married for life’…and they meant it.
I hope this has been helpful to get you started…don’t hesitate to pop back in with questions or concerns.