March 23 - Review of the results

Sat down with (Dr) Nick Gemma with Jan this afternoon.  The results show:
Myelodysplasia - this beats a lot of other possibilities - More info on Myelodysplasia
So... this is a low grade cancer of the bone marrow.  It isn't multiple myeloma, leukemia or lymphoma.

Fortunately, the genetic markers done (during the bone marrow) are all without deletions, monosomies, trisomies and so I have a favorable prognosis.  I do have the following genetic marker: IDH2 p.Arg172Lys

Course of treatment - initially chemotherapy - Azacitidine IV (for now) - 5 days in a row for one week of each month - we will see how this works. After a time, we'll get another bone marrow biopsy to see how it has helped (or not).  Nick Gemma thinks it may help my fatigue (and decreased exercise performance!) by allowing the normal cell lines to make a come back (red cells [primarily], white cells, platelets.  I start this coming Monday, March 27!  Prayers are most appreciated!!!

Comments

Post a Comment

Popular posts from this blog

January 28 - Just in - I am going to receive a bone marrow transplant

Image
In the last 2 weeks, we received much amazing news.  In quick succession, we found out: I am going to receive a bone marrow transplant (actually, it is a stem cell transplant) at Johns Hopkins on March 9. All four of our children were matches for the transplant. The one child I didn't expect to be the donor is..... ?  [Listen to the audioblog post below for who it is!] As previously mentioned, the IDHIFA oral chemotherpay worked miraculously on my MDS and the blast count in my bone marrow dropped below the 5% cut-off for consideration of a bone marrow (or stem cell) transplant. As exciting as this is, the reality of the details of getting the bone marrow transplant have set in: Getting all of the extensive testing (CT scans, Echocardiogram, EKG, PFT's, lab, repeat Bone Marrow Biopsy 😓etc) needs to be done prior to the transplant. Finding a place to live for the 2+ months Jan and I will be in Baltimore (so as to get treatments and checkups at Johns Hopkins o...
Read more

February 16 - New Information

This past Monday I had a difficult bone marrow biopsy lasting 1 1/2 hours.  Jan and I have been waiting for the results and we got the results late yesterday afternoon My bone marrow revealed that... I AM IN REMISSION! This means that the biopsy found no evidence of cancer in the biopsy and the chimer test shows that there is only donor cells (and none of mine)! Praise and honor to GOD   (and the staff at Johns Hopkins).. If all goes well,  I should be discharged early next week and return home to finish recovery at home and then return to the office on a limited basis (at least at first).  Still a long way to go.... So... YOUR PRAYERS and support have worked.  Jan and my family is greatly relieved and also grateful. Bless you all!
Read more

March 6 - a harrowing experience comes to an end.

Here is what I hope you'll find interesting but it sure wasn't fun! [Note I did revise it to explain some medical terms and lingo ... sorry about that!] Two days before chemo (March 1), Dr Luznik told me to stop the ibuprofen (it would mask fever in the BM transplant) and the IDHIFA (Thursday).  Friday, the Hickman catheter was, not a problem. Went out to eat with Jan and Justin and Aaron (our two sons who helped us) and I could barely walk (IDHIFA bone ache off the ibuprofen - noted side effect of IDHFIA).  Saturday, got the chemo without a hitch.  The aches and pains of the MDS (myelodysplastic syndrome) (and IDHIFA) came back.  I spoke with the attending on service, Dr Imus. How gave me OXYIR 5 (a low dose oxycodone since I can use Ibuprofen or tylenol).  I had a vague chest ache at the time but thought it was the bone ache. Through Saturday afternoon, the vague chest ache got slowly worse.  By the evening, I could NOT even watch a basketball game...
Read more