Newly Dx have questions

[LynnI]

Hello;
I have recently been dx with low risk MDS, with -5% blasts, this has effected my RBC’s only at this time, the other two are fine. I am being seen at a Centre of Excellence. I am a 46 yr old woman with no history of cancer or treatments. I have been somewhat transfusion dependant since last Nov, 4 transfusions to date of 9 units of BRBC’S. I have developed antibodies after the 3rd transfusion. My Dr. has said that I am at low risk for progressing to AML and as far as I know no Chromosome changes, although from reading this forum, I will ask. I am going next week for another BMB (3rd since Feb), they are now looking at my C-Kit genes, not sure what that means. They are starting me on Revlimid next week.
Is there anyone here like me?? Age,sex and with no history of other cancers?
What questions should I be asking my Dr.? What records should I be keeping and should I be asking for copies all my tests?
Thanks in advance
Lynn

[lindajo]

Yes you need copies of all tests. The aplastic anemia & MDS foundation has great information that is easy to read and understand. Learning about this disease is like learning a new language. It will take awhile before you understand what to ask.

The leukemia and lymphoma society also has easy to read booklets and suggestions on what to ask. Go back to the forum home page and click on links
Find out what classification of MDS they have diagnosed you with. It will help you understand what you read.

[eve]

hi lynn

i charted everyone of my dad’s blood tests so that i could see at a glance if there was any significant change – i divided the chart into

date, wbc, rbc, hgb, hct, plts and then a column for notes

i noted everytime we saw a doctor and the results of that visit, test taken, treatment given

it proved to be a great aid because i had all the information at my finger tips without having to rummage through dozens (maybe hundreds of papers)

i would take a copy of this chart with me to every doctor’s appointment (with any and all doctors) and it would show them at a glance what was happening with my dad’s condition

by all means get copies of every single test you take

if i can be of any further assistance please feel free to e-mail me

good luck
eve

[cherylm]

Hi Lynn,

I agree 100% with Eve. Keep your own set of records and stay on top of the info out there. There is alot if you look in the right places. Knowlegde is power.

I too am here if you have any questions or just want to vent! Feel free to email. Best of luck to you.

Cheryl

[jaxem]

lynn
welcome. sorry to hear about your diagnosis. what made you go to a Center for a blood check? what type MDS do you have, ie RA, RARS, etc.? Why did they choose revlimid? why have they done so many bmb’s? don’t forget to keep a running count of # of RBC transfusions you get to keep abreast of ferretin level which are not compiled in a standard cbc test. I advise getting a 2nd opinion too before starting the revlimid. Good luck to you in fighting this terrible disease.

[LynnI]

Thank you everyone for the replies.
Jaxem,
It started last fall with severe anemia, at first the doc’s thought I had a bleeding ucler but they couldn’t find it, scoping upper and lower etc. With no other evidence it was suggested that I have BMB done.
The first Dr. that I was sent to for the BMB reported that everything was normal and that they continue to look for a bleed.
My family Doctor and the Dr. of Internal Med didn’t agree. After so many months and no answers I insisted that he send me to a big centre/hospital, at that point he sent me to Sunnybrook in Toronto. The Dr. there was not happy with the slides of my first BMB and they did it again. It was at that time they dx me with MDS. After months of tests, within 3 wks of going to them, I had a dx. I was then referred to a Dr. that specialized in MDS and is listed as a Centre/Dr. of Excellence with this site. He sent my slides of the last BMB to Nuclear Medicine, where they have discovered something with my C-Kit gene. They now want to do another BMB to confirm. What it means to my treatment or dx is beyond me at this point but I intend to find out.
This is a quote from the report to my family Dr.
‘The aspirate demonstrated trilineage hemotopoiesis with singificant dyserythropoiesis, and increased macrophages. The aspirate in itself ws not diagnostic. The biopsy revealed a markedly hypercellular bone marrow with an increase in all cells as well as macrophages and mast cells. Reticulin fibrosis was also present. One small focal agggregate of likely benign lymphocytes was also noted. Taken togther, the findings from the aspirate and the biopsy showed evidence for a combined myelodysplastic syndrome/myeloproliferative disorder. The findings were most consistant with the World Health Organization (WHO) DIAGNOSIS OF mds/mpd, unclassifiable. Cytogenetic studies were normal. Hemoglobin of 81 with an MCV of 94, normal white cell count of 7 and mormal platelets of 356.’

I have so much more to learn as to what all that means.

Thanks
Lynn

[jaxem]

lynn
don’t we all? i learned that mds & mds/mpd are similar but otherwise different diseases. I never heard of mds/mpd before. I copied a paragraph from the National Cancer Society and Web/MD (bottom):

/MPD-UC).Patients with myelodysplastic/myeloproliferative diseases (MDS/MPD) can have the same symptoms, except that they can have fullness in their abdomen, particularly the left side, caused by an enlarged spleen, which can be felt by the doctor. They may also notice enlarged lymph nodes

The myelodysplastic/myeloproliferative diseases (MDS/MPD) are clonal myeloid disorders that possess both dysplastic and proliferative features but are not properly classified as either myelodysplastic syndromes (MDS) or chronic myeloproliferative disorders (CMPD).[1] This category is composed of three major myeloid disorders: chronic myelomonocytic leukemia (CMML), juvenile myelomonocytic leukemia (JMML), and atypical chronic myeloid leukemia (aCML). Myeloid disease that shows features of both MDS and CMPD but does not meet the criteria for any of the three major MDS/MPD entities is designated as myelodysplastic/myeloproliferative disease, unclassifiable (MDS

use your browser and learn, learn, learn. a lot of the stuff is on the internet but you have to search to find understandable articles.

[Zoe]

Lynn,

Welcome. Like you I have no cancer history, and I am 48. I am doing well in regards to my MDS, which is also a low risk MDS. Looks like Jack got you set up to start learning. There are so many wonderful and knowledgeable people on this forum.

Zoe

[Jack_dup1]

Lynn,
I didn’t see it mentioned, are you getting filtered irradiated blood to cut down on anitbodies.
Jack S.

[LynnI]

Thanks Zoe, altough I am sorry that you have it as well, it is nice to know that I am not alone. Which it feels like sometimes.
Jack,
I don’t know, I have only had one transfusion since the antibodies kicked in, but I can find that out. One thing is certain my Spleen doesn’t like these transfusions and it has been like that from first one. It really kicks up a fuss, but the Dr.s keep checking it, including SCT’s, it is slightly enlarged.
My last transfusion was on the 20th, I managed to last almost 4 months without one. But I am afraid I used up all those RBC’s that weekend.
I was entered with my dog in the Regional Championships for Agility and I ran my butt off competing, to earn a 2nd and a 4th. It cost me a bit, but it was worth it.
Thank you, for posting the info on the MDS/MPD and the info on the links. I have been doing my homework and I expect the learning curve to only get steeper.
We were informed today that our health insurance is going to cover all Meds including the Revlimid which is a relief.

Take care and thanks again
Lynn

[Jack_dup1]

Lynn,
Just to be clear on demanding the filtered and irradiated blood, it is extremely important in regards to preventing a build up of antibodies,
I have had an extremely enlarged spleen for 5 years and only 6 units of blood in that time. We are all different, even if the diagnoses is the same. I am mds/mpd, (CMML), high whites, low platelets, normal reds. Use us as a reference but don’t expect the same results or symptoms even though someone may have the same counts and classification may have.
Stay optimistic and enjoy what brings you satisfaction, congrat. on the ribbons.
Jack S there is more than one jack

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