Pre-MDS

[Donna]

Hi,
I am 72 year old female diagnosed at this time with Pre-MDS. Ever heard of it? My WBC and platelets run low and I have been followed with blood work for several years. Currently my WBC is 2.8 and my platelets are 68,000. My hematologist/oncologist says based on the bone marrow biopsy, I am pre-MDS because it didn’t show “full MDS”. The report actually said “evolving into MDS or some other form of blood cancer”. I have gene mutations in ASXL1, TET2, RUNX1 and SRSF2. My doctor said I will most likely need to start chemo the later part of this year when he expects my platelets will be at 50,000. This is apparently the magic number for treatment. He said it would be chemo 5 days in a row every month for the rest of my life or for as long as it keeps working. Has anyone else had any experience like this? Treated with chemo for a Pre diagnosis? Thanks for any response.

[rar]

3 years ago I was told that I had pre mds so mild it would never need any treatment. 3 months later I was told I had mds raeb 2 very high risk. 3 months after that I had a transplant. Another 3 months the mds was in remission but I have gvhd that still plagues me.

Ray

[Allan Romriell]

Donna, You might want a 2nd opinion. I have MDS-Rs confirmed with a bone marrow biopsy and my numbers are better than yours. I know there are many different classes of MDS and I am no expert, but your platelets are lower than mine were when the sent me for a BMB. I wish you all the best, as Ray said above, this disease is highly unpredictable…..

[Donna]

Ray,
Thank you for responding. Were you under the care of the same doctor 3 months after being told you had mild case or did you go for second opinion?
Donna

[Donna]

Allan,
Thank you for responding. I guess my BMB didn’t necessarily meet the criteria for MDS diagnosis by WHO latest standards. Right now my doctor is going by my symptoms and my blood work. Right now I don’t have to go back until June. I recently woke with severe back pain. X-ray showed new compression fracture of spine (T-12). The MRI mentioned that there is invasive bone marrow process, possibly from anemia or myelofibrosis. My doc said myelofibrosis was ruled out with the BMB. He also ruled out multiple myeloma. He said they see this with MDS.
I’m wondering if it is common for MDS patients to get back pain or strange MRIs or compression fractures.
Donna

[rar]

Donna,

The hematologist / oncologist who made made the initial diagnosis is still my local oncologist and I will see him monthly forever how ever long forever is. I trust him, I think my blood number changed very rapidly. I saw a second oncologist who said in a busy year he would see one MDS patient. I got a second opinion from a VA doctor. She agreed with the diagnosis but told me the waiting list was so long that i would die before my number came up. I saw two transplant doctors who pretty much agreed on treatment. I did not go with the one who I had a slight preference for because I was under treatment from the other one and was in a phase one clinical trail. The drug I was on reduced blasts from 15% to 2% in two months. the transplant doctor told me do the transplant asap while still healthy, no drugs will give permanent remission. My brother in law, a retired oncologist consulted and pretty much agreed with the treatment plan. I had the transplant June 1 2014. I had complete remission in 6 months and have been plagued with GVHD and drug side effects ever since. I am glad I did the transplant and would do it again. Depending how you count I had 6 opinions. I wish all you well.

Ray

[Allan Romriell]

Donna,
Not sure on the back pain, although I have some too. I have noticed more joint and bone pain in the last year( I was officially diagnosed in June 2017 but blood work in april showed low blood counts so I suspect I have had this for close to a year). Joint or bone pain doesn’t show up on any of the symptom lists I have seen but many people on forums like these have mentioned joint and or bone pain. It is a bone marrow failure disease and your large bones are where all the marrow factories are that are effected by MDS so seems like bone problems would be likely. I hope all goes well for you. I just had blood work this month and it had not changed since October so my Doc is pretty happy with the slow progress. I go back in april, he has me on every 3 months right now. My main problem is low red blood cell count and low hemoglobin, but they are only slightly low 11.6 hemoglobin and have been holding steady around there for several months. All the best for you, I hope it goes well.
Allan

[Donna]

Ray and Alan…..Thanks again for responding. I thought I would get an e-mail when someone responded on this site but I did not and unfortunately did not come on to see the latest notes. Ray, if you don’t mind me asking, how old are you and what is gvhd? Alan, does your doctor talk about treatment or when to start treatment. As for myself, my compression fracture is not as painful, so I assume healing. I go to see my PCP soon to see if I need to be treated for osteoporosis. Bone density test says I do not have it and spine x-ray said diffuse osteoporosis. A puzzle. My PCP talked to my hematologist/oncologist and it is up to my PCP what to do. Again, I’m wondering if I should already be treating or if the diagnosis could be something different. It is all such a mystery. I hope you are both doing okay.
Donna

[rar]

Hi Donna,

I am 77 years old. Graft Versus Host Disease (GVHD) is a disease where the transplanted cells see me as being foreign and attack me. It is a leading cause of death after an allogenic (not self) transplant. My eyes, skin, mouth,, and throat are under attack.

MDS is not common. A local oncologist sees few patients with it. Get a second opinion at a transplant center.

Ray

[Allan Romriell]

Donna,
My Oncologist has not given me any indication of what conditions he would consider starting treatment. He told me when he gave me the diagnosis last july that I had the disease but it wasn’t doing much yet and I might not need treatment for a year or two. When I saw him in October for my 3rd apt after diagnosis he said the I might not need treatment for 3 to 5 years, so I concluded by that my MDS is progressing slowly for now. I have read that most drs don’t consider treatment until your hemoglobin starts dropping below 10 or other blood counts drop real low. My white count and platelets have been in the normal range for several months now, and hemoglobin is higher than it was when I was first told I might have a problem and needed a bone marrow biopsy. I know MDS-Rs can progress very slowly so I hope that is the case with me. I am 65 by the way and was told I had a problem during routine blood work for a physical last april. Took until late june to get to BMB and was given the official news in early july. MY guess is I have had this about a year now, judging by the way I was getting tired and my joints started hurting a lot more around march of last year. Just thought I was getting old. I hope all goes well for you and your MDS is a slow progress as well. All the best.
Allan

[Donna]

Hi Ray,
At what age did you have the stem cell transplant? Was the donor a relative? I wish you well and hope things become easier. I am treating at a Center of Excellence, but not with the specific doctor mentioned. I really like my doctor, yet I sometimes wonder if another opinion would be good. This is actually my second opinion though. The first one was also at a Center of Excellence. I had most of the blood work and the BMB with the second doctor. He said I might possibly be a candidate for a mini-stem cell transplant. I don’t understand all this talk when I am being told I am pre-MDS. It is a bit confusion.
Donna

[Donna]

HI Alan,
Your journey seems like it is moving along very slowly which sounds good to me. The doctors have been watching my blood work for several years. When my WBC went to 3.8, my PCP sent me to hematologist/oncologist. He followed me a year or so and then started talking about myelofibrosis and my need for BMB. His alternate diagnosis was chronic leukemia. That is when I went to the second hematologist/oncologist and he said no to myelofibrosis because my spleen isn’t enlarged. He is just calling it pre-MDS and planning chemo when my platelets reach 50,000. Hmmmm. I guess I have a lot of questions for him at next visit. I don’t go back until June. Meanwhile I am just seeing my PCP over the question…..do I have ostoporosis or not. Bone density test in Oct. said no and x-ray of spine in Jan. says diffuse osteoporosis. Something else interesting. I wish you well in your journey.
Donna

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