Early on my MDS story 72 y/o woman

[Helen Morehouse]

My introduction to MDS
2015 March and April
Dry cough 8 weeks
Summer 2015
30 k wbc and anemia
Bone marrow biopsy 12/15 MDS Dx
March 2016
Upper and lower GI
‘Scope for low hct both negative
Atrial flutter and fibrillation with resting
Heart rate 125 occured
On xaralto
Gradually short of breath and weak I thought from low hct
Went to 2 places for second opinion and stayed with Sloan Kettering- got CBC every 6 weeks ‘watchful waiting’
May 2017 on the infamous trip to Alaska in the rain I got psoriasis, external ear infection, and cough returned.
Aug 2017
Second bone marrow
Biopsy revealed 10% blasts (20% is leukemia) so chemo – no hair loss -recommended as treatment not cure
If that doesn’t work I get a mini bone marrow transplant
Got married to Ann in Aug
So she insisted I go to Boston MD’s
Made appt with dr D’Angelo at Dana Farber
On Sept 11th
I got worse
Cough persisted
kept all up at night
Swollen left ear
Heart ❤️ rate 146 a minute
Psoriasis going wild
Itching and remained my worse complaint
They ask you about pain? And I would reply ‘i itch
Especially my back’
Sept 9 I got chest X-ray
Which showed diffuse pneumonia
Ann put her foot down and insisted I go to ER
I was whisked into a room with that gnarley heart rate and in minutes had 4 iv’s 6 nurses and 3 doctors
I was inpatient at South Shore for 2 weeks on cardiac floor
I am a medical enigma
So Ann nailed those hospitalists muttering in the corner with ???? To explain and refer
We wanted drs who Talk to each other and think
What is really wrong with this retired Radiologist
72 Year’s old anyway …
We got some really well trained, intelligent and nice referral drs
Dr Pulmonary
Dr Cardiology
Dr Oncology
My treatment progressed
Returned home w 02
Then I had cardiac ablation for atrial flutter am on the dreaded amiodorone, but atrial fibrillation is almost completely controlled
Unfortunately I then had flu shot- which gave me pneumonia- again
Next had port put in
Oops! had severe reaction to platelets which had not been irradiated
Fever chills difficulty breathing- given nebulizer treatment and did well
Then port not workable for a month…due to blood clot underneath
Did VERY well after #1
Cycle chemo – for
Myelodysplastic syndrome and antibiotics for possible infection of port with hematoma
To keep blood thinner on a reversible kind put on lovenox so got many hematomas on belly
I read about Pradaxa which now has reverse able agent ( costs $3,500 a shot)
So am on it!
Am also on weekly shot for low blood levels procrit
Cycle # 2 last week Nov
Have lost 25 pounds
Psoriasis is healing –
Am still on o2 but am weaning -Pneumonia looks clearing on X-ray
One specialist thinks it is 
PAP Pulmonary alveolar proteinosis 
-Dx by blood test I’m not sure they’ll have at South Shore Hospital
-Is associated with blood diseases
Have had total of 8 units transfusion ed
Last two Outpatient transfusions I had to stay overnight in ER -nurses love me because no real work…8 hours of checking vitals only.
Blood must be irradiated or I will have reaction –
Unfortunately nurses cannot use same site (port) used for chemo for blood transfusions
On day 4/7 of second cycle ok wbc but RBC low and only 40 k platelets
Can also get blood transfusion at SSH outpatient department
Maybe why I am tired
This is from chemo which is supposed to convince bone marrow to make functional blood cells and stop partying!
As a result of this demethylation treatment its takes a while for busy bone marrow to respond!

[Allan Romriell]

Helen,
What a battle, glad you seem to be doing a little better. I have only been on this MDS journey since june of this year and so far it has been nothing but check ups as blood counts have improved on their own so no treatment needed for now. I wish you all the best. Take care.

[JACKLINE Lopez]

My mother is 73 and recently dx. She’s dealing with high risk MDS and is recommended to start Vidaza. My siblings and myself are very concerned about chemo for my mom. Mom says that she feels OK only some palpitations and fatigue when humoglobin is in the 7. So far, she has received a total of 13 units of bloof since early Oct. Allan, what special diets or regimens are you following if any to help with your maintaining counts stable. If we can help mom do this without the chemo we go for it 100% rather than see mom suffer with toxic meds. Please advice 😔

[Allan Romriell]

Jackline,
So far all I have done is try to eat a little healthier, and I take a multivitamin for old guys and my wife has started me taking some essential oils that are suppose to help with cell health and are antioxidants. I think she started giving me those in sept and it may be placebo effect I don’t know but I have felt less fatigue since starting on them. My last apt was in mid October and only problem was some mild anemia. Platelets and white blood count was in normal range and hemoglobin was back to 12. My lowest numbers however were still pretty mild compared to many. I think my lowest was platelets at 75000 hemoglobin 11 and white blood count a little low, I don’t remember the number. Those numbers were in april from a routine physical and from that I was referred to hemotologist who diagnosed MDS with a marrow biopsy. Since then platelets have bounced a little but steadily higher and white count was good by june as still is, hemoglobin has steadily increased from 11 to 12. ( I am 64 almost 65 by the way). I know I am lucky to only have a low risk version of MDS so far. I hope your mother can have some improvement. This really is a nasty disease and is so random in the way it effects everyone. I wish you all the best.

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