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Barb Sun Jan 14, 2018 12:08 AM

Watch and Wait Appears Over
Hello. I was diagnosed with MDS 5q- syndrome in 2006. I have maintained well, a little aranesp in the beginning. I never even needed a blood transfusion as my hemoglobin was consistantly in the 9's with an early dip to 8. My whites have always been fine. I went to see the "vampire" twice a year to monitor. In the last 2 years I have watched my platelets slide down from the high number expected with 5q- syndrome, but they stayed in the 300-400 range.

Well, that was true until this past week. I went to my PCP because I have been having various symptoms from cold chills that feel like they are coming from my bones, frequent low grade fevers, achiness, a weird blotchy rash, and exhaustion and more. She ran every type of reasonable lab.

Suddenly, I am told my ANC is low (not much at 1.2, but I have never had a low ANC), hgb at 7.4, platelets barely in normal range at 152. The kicker being the pathology report said the blood smear showed 10% periphreal blasts. Also my MCV is low?!? It has slid down from high for years to normal, and now low.
My hemo suspected iron deficiency, but my iron tests were all fine.

My hemo is consulting with The James at OSU. He is doing flow cytomotry to do a machine count on the blasts and will likely send me to The James for another BMB. In the meantime, I am giving up my vampire virginity and getting a transfusion Monday. I have asked for Wonder Woman to be my donor. Hoping to feel normal by Tuesday so I have the energy to deal with this.


Sue&Dave Tue Jan 16, 2018 03:13 PM

Hi Barb - Welcome to the boards and I'm sorry to hear that your W&W period may be coming to an end. Since you were diagnosed so long ago and didn't have too many symptoms it is easy to become complacent and think that things won't change. I have to remember that every day because my husband has had such a good response to Vidaza that it's easy to fall into the trap to think things won't get worse.

I find it interesting that your current symptoms are very similar to what my husband experienced when his W&W period was over. Honestly his blasts didn't increase significantly - never went over 6% per his BMB, but his other symptoms were so bad that the doc had no choice but to start him on Vidaza. His numbers had slowly drifted down (all 3), but the main concerns were his low-grade fevers and bone numbing exhaustion. He didn't even have the strength to walk by the time we started him on Vidaza. We probably waited a bit too long to get him going on treatment, but his hemo wanted to wait a full 6 months after he completed an 8 week regimen of IV antibiotics for an unrelated issue.

I encourage you to explore all possibilities for treatment going forward. Do you have a donor by chance? My husband does not - therefore we are riding the Vidaza train as long as possible (with hopes that a cure will be found before the V stops working!) Also, you may want to consider enrolling in a clinical trial if available. Is The James a MDS Center of Excellence? Well worth the effort to be followed by a COE. We are a 3+ hour drive from our COE, but only travel there every few months to meet with his MDS doc. Otherwise his local hemo takes care of everything.

Again, I'm sorry to hear about this most recent turn of events, but much progress has been made in MDS research since you were diagnosed. Best to you!

Barb Wed Jan 17, 2018 05:34 AM

Thank you for the welcome. I guess that complacency is an attempt at normal life. I am ready to be complacent about this area of my life again :rolleyes: so I can be more passionate about other things. I hope your husband is able to maintain his good response. I wish we could all be complacent about bone marrow failure. Ok, pity party over.

I do not have a donor. We have never even considered the possibility since with the 5q- syndrome diagnosis, I have been considered low risk. I am still waiting to hear from the hemo on the flow cytometry report that is to recount the periphreal blood blasts.

The James is not considered a COE. However, they do have an award winning hematology/oncology unit. They are a very well known university affiliated cancer clinic. They do a great deal of cutting edge research and have doctors who specialize in very specific subcategories of each cancer. My previous dr there was an MDS specialist. So I feel good about returning there.


Pam Wishart Wed Jan 17, 2018 05:54 PM

W&W over
I know this wouldn't explain your blasts but has your doctor checked to see if you might be losing blood from something other than your MDS? The reason I'm asking is because of your low MCV, usually normal or high in MDS.

Also, if you are MDS 5q- have you tried Revlimid?

Best wishes

Barb Wed Jan 17, 2018 07:16 PM

Yes, that was his first thought. He checked my iron , TIBC, etc. Nothing seemed to indicate patterns of blood loss. I thought that too. I guess I need to research the blood loss angle more.

Iron 47 mcg/dL 30 - 160 mcg/dL
TIBC 193 mcg/dL 225 - 430 mcg/dL
Iron Saturation 24 % 20 - 50 %
Ferritin 313 ng/mL 13 - 150 ng/mL

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