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Immune Thrombocytopenia Purpura (ITP): What helps?
Blood Cancers & Disorders | Last Active: Nov 8 4:14pm | Replies (166)Comment receiving replies
Hi @michey. Oh those stubborn husbands! You’re right to lovingly push him to up on that latest blood test which showed a further drop in platelets and and his red blood cells. It may be nothing more than something to raise an eyebrow but the fact that he is seeing some changes means it’s time to take a closer look.
No lectures from me…we’re all guilty of checking out Dr Google. The good “doctor” is all knowing, but unfortunately sometimes all that information leads us down a rabbit hole filled with twists and turns that aren’t even relevant. So, from experience, the best thing to do is wait until you hear what the doctor has to say. And yes, you should go with your husband if he relents, to take notes! All of my doctors/oncologist/hematologists welcomed my husband to appointments. As patients we’re trying to listen to everything with information flying at us 100 mph. So having a spouse or good friend along to grab some notes & give support is an excellent idea.
One note, depending on how low his platelets are your husband might need to avoid knife juggling until he gets in for his visit. But keep up those amazing hikes and good life style. That’s worked well for him (and you) for 80 years with no meds. That was always my goal too…then Mother Nature had a surprise for me…😏. But my medical teams have all said my previous lifestyle is what had me recovering so quickly. Our healthy diets, exercise and positivity most definitely impacts our quality of life.
I know it’s human nature to worry but try not to read too much into these blood tests right now. You also found out you have MGUS, one of a number of watchful waiting conditions that often require no immediate treatments. 🙃Let me know what you find out next week, ok?
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This is a follow-up to my first post here about my 80 year old husband. He is in a "watchful waiting" stage for possible MDS (Myelodysplastic Syndrome) and continues to suffer with terrible itching from little bumps that erupt especially where there is some rubbing (e.g., elbows, backside and behind legs from rare periods of sitting watching TV or driving the car), etc. Every 3 months he has gotten a battery of tests from a hematologist/oncologist in a reputable cancer center (rated #24 in comparison to other US cancer centers).
Last week's blood tests revealed: Platelets normal but right at the borderline. His RBC, hemaglobin and hematocrit are slightly below normal and his RDW is high.
He also consults with a dermatologist (he's actually seen 4 dermatologists) and the latest one finally talked directly to the hematologist but we still have no answers about the itching --- other than continuing to apply steroid creams. The itching is the worst part in this watchful waiting. The dermatologist ordered an incredible number of blood and urine tests from the routine ones to hepatitis, rheumatoid arthritis, TB, etc. and all were negative.
In November, my husband will meet with the hematologist/oncologist who may give him direction on getting CAT scans for chest and abdomen. The hematologist/oncologist still does not see the need to get a bone marrow test yet. My husband will also meet with the last dermatologist to talk about the extensive tests he prescribed and possible next steps.
My husband remains very active politically and physically. He doesn't look or sound his 80 years but the itching is terrible.
One more thing: He has gone from being an avid pro-vaxer for Covid vaccines for himself and others to now questioning if he should get the next booster or not. All his problems started after getting his second Pfizer which may be a concidence or possibly not.
It would be helpful to hear from anyone in a similar situation while we count our blessings that my husband remains in a watchful waiting stage. I read all the posts about skin but I'd also welcome any advice about his itching/eczema that continues to drive him crazy.
Thank you!