Forum Replies Created
-
AuthorPosts
-
August 19, 2021 at 5:30 pm in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #54847MichaelParticipant
I am low risk and am not receiving any treatment (5+ yrs of watch and wait) for MDS. Based on what I’ve read it doesn’t appear that I’m as yet eligible for the booster. My next hematologist appointment is on 8/30 and I’ll surely inquire at that time.
MichaelParticipantI was diagnosed in June 2016 and have been on watch and wait. My cytopenia is neutropenia. Platelets are consistently normal range and hemoglobin ranges from 11.5 to 12.2. I have monthly blood draws. My hematologist says no need for treatment until hemoglobin goes below 10. I don’t have the stamina I used to have but I still walk a pretty hilly golf course three times a week spring thru fall. Some days more challenging than others.
Best wishes for good results at you next blood draw.
MichaelParticipantI was diagnosed in June 2016. My cytopenia is neutropenia. Currently on watch and wait. Platelets are consistently in the normal range.
In July 2019, I was diagnosed with polymyalgia rheumatica. Prescribed prednisone which brought pain under control but managing it for 20 months was brutal as you need to taper down prednisone dosage.
Then as the poly was diminishing my rheumatologist ordered X-rays that revealed osteoarthritis in my hands and knees. Prescribed diclofenac which is a topical to be applied to the painful joints. It helps but is a topical nasid as opposed to oral.MichaelParticipantJean~
FWIW, I travel 165 miles to my Center of Excellence. I do this every six months, and rely on their guidance for treatment. I see my local hematologist monthly for blood work but treatments will be decided by the experts.
Best wishes.
MichaelParticipantJean~
I’ll pile on with the recommendation for a second opinion from a center of excellence.
I was diagnosed in 6/2016. My local hematologist wanted to start Vidazza ASAP. My initial BMB indicated 6% blasts. I asked for a second opinion and within 2 weeks had an appointment at a center of excellence. Results. From that BMB showed 1% blasts. The plan for treatment was halted. I’ve been on watch and wait for nearly 5 years.
My monthly blood work yields results similar to your husband. Wbc 1.8, rbc 4.1, hgb 11.5. The difference is my platelets are not low. My blood counts are stable month to month. I do also get skin infections that I generally treat myself. I have not had any other symptoms.
I am lucky so far and am thankful that I’ve had no treatment. The second opinion was a Godsend.
Best wishes.
- This reply was modified 3 years ago by Michael.
MichaelParticipantI was diagnosed in June 2016. My neutrophils have been chronically low since outset, typically around 1.6 with absolute neutrophils between 400 to 700. I responded well to neupogen and was self administering shots twice weekly. My local hematologist scheduled me for Vidazza but a second opinion from a Center of Excellence cancelled that course, in July 2016. I no longer take neupogen unless I’ve developed some sort of infection, mostly skin infections.
While my peripheral blood is always low in wbc, my C of E doc says that the neutrophils are getting to my tissue and therefore have not suffered anything other than minor skin infections.
Thankfully I’ve been treatment free and without transfusions. My last neupogen injection was in January 2020.
MichaelParticipantI see a local hematologist for routine monthly blood work and monitoring and I travel to a Center of Excellence for annual bone marrow biopsy. I am 68 and diagnosed with low risk MDS. Initial diagnosis was RAEB 1 (6 % blasts), which was done locally. Local hematologist scheduled Vidaza treatment. I sought second opinion at Center of Excellence. Diagnosis was changed with less than 1% blasts. Treatment was cancelled and I remain on watch and wait 5 yrs later. All my treatment decisions will be guided by my COE physician.
Moral of story is that in my opinion everyone with MDS should put their trust in Ctr. of Excellence and a physician who deals with MDS daily. Local hematologists likely don’t see enough patients to have the experience in dealing with a disease that is so diverse as MDS.
Best wishes.
MichaelParticipantRod
Cleveland Clinics has many locations in different states. You can find the Centers ofExcellence on this website. Click on visitors and patients above. A box opens with a menu which includes Centers ofExcellence. Hope this helps.
MichaelParticipantYou are welcome Rod. I am 68 and was diagnosed at 63.
Best wishes.PS~ I recommend going to a Center of Excellence, for bmb and diagnosis.
- This reply was modified 3 years, 4 months ago by Michael.
MichaelParticipantI was diagnosed with MDS in June 2016. Referral to hematologist was result of low wbc. After a battery of blood work I was sent for bone marrow biopsy to confirm MDS. I’ve not had noticeable symptoms prior to or after diagnosis. I’ve had no treatment and have been on watch and wait since diagnosis. Blood counts typically run; wbc-1.6, rbc 4.2, hemoglobin 11.5 and platelets 200+. So I think the answer to your question is yes, but without bone marrow biopsy or molecular genetic testing you won’t know if you have MDS. My MDS expert physician described to me the concept of punctuated equilibrium ~ meaning your counts can stay stable for a period and then some change occurs disrupting the counts which then stay stable until the next event for change. You can stay at levels for years, as I have.
MichaelParticipantI was diagnosed in July 2016. Local hematologist gave me a brief overview and recommended Vidazza ASAP. When I went for first follow up, I was seen by PA, who couldn’t answer any of my questions. This caused me to pause and seek second opinion at a Ctr. of Excellence. Best move I’ve made. Vidazza was cancelled and I was put on watch and wait. The difference in BMB results from local hematologist and COE was dramatic. The COE is 3 hrs travel time each way. I go there at 6 month intervals. The COE dr. guides my treatment and performs annual BMB. I see local hematologist for monthly blood work. I am still on watch and wait.
A COE visit and opinion is highly encouraged.
MichaelParticipantI listened I on a webinar sponsored by the mds foundation yesterday. I believe I heard that Vidazza in pill form was not approved as it was too toxic. However, dacogen in pill form was approved.
MichaelParticipantMark~
We all like hearing positive results like you have expressed. You’ve had a bit of a roller coaster ride from your first posting. I especially like your last sentence.
Best wishes and keep the faith.
MichaelParticipantKeep the faith Mark.
Best wishes
MichaelParticipantMark~
Sorry to hear of progression to AML. It’s good that you are young and in good shape and that you have many friends for support. You may potentially be a candidate for transplant.
Best wishes, stay positive.
-
AuthorPosts