Looking for information

[Ger]

Good Morning and wishes for good health to all.
Can anyone give me a clue...Don got hit on the calf of his leg Fri. the 19th by the bottom corner of the car door. It took a chunk of skin off about the size of a dime (thru his cotton trousers). We were going to the Hematologist for his Neupogen injection right away so he asked to nurse to bandage it. All was well except that by Mon. it was still bleeding or ozing. The Hemo. prescribed Cipro as a precaution and all seemed to be going ok except that he was developing a flat pinkish pinpoint rash above the injury. It has been causing him some discomfort walking but he tries to keep moving tho sometimes with a limp. We noticed last night that his leg is swollen clear down below his ankle also rash is progressing down his leg.
Since this adventure for us started in June there's a lot I don't know about.
WBC and Platelets are the two strains that are low. Was on 1 injection and week and found he needed 2 less powerful injections of Nerpogen a week. It is raising his WBC. Platelets are 36 on the 19th.
I would appreciate any input you may have.
Thanks
Geri

[Ruth Cuadra]

Geri,

It sounds to me like Don's wound is infected. He needs to be seen ASAP by the doctor and possibly given a more powerful antibiotic.

Let us know how it goes.

Regards,
Ruth

[Ger]

Saw the hematologist today and had a Doppler scan of the leg. There is not a blood clot caused by the injury. That is also a relief to know that since Don has a mechanical heart valve.
Dr. advised him to stay flat with that leg elevated to reduce the swelling.
Don is not a complainer so many times all I can do is keep a watch for things that are out of the ordinary, and believe me with MDS sometimes that's kind of difficult to know.
So I'll continue to watch read and learn all I can to help him. I am so very thankful that I found this forum.
God bless you all.
Geri

[Ger]

Can anyone tell me are High Grade MDS and High Risk MDS the same thing just a difference in terms or are they something different?

Thanks
Geri

[Zoe's Life]

Geri,

They are the same thing.

I am grateful that it wasn't a clot. He is luckey to have you.

Zoe

[Ger]

Thank you so much Zoe, I was pretty sure about this but just haven't had a chance to ask the Dr. The first time we went to the Hematologist after the BMB he wrote High Grade myelodysplasia on a piece of paper and gave it to us. Everything I find referencing it uses the term High Risk. I kind of hesitate asking too many questions becauseDon just doesn't seem to want to know a lot. We have both read the bookletMDS Foundation and AAMDS Foundation sent to me. They have been very helpful. I also search the internet and try to be aware things that might help me to help Don.
Thanks and God Bless.
Geri

[Neil Cuadra]

Originally Posted by Ger

I kind of hesitate asking too many questions because Don just doesn't seem to want to know a lot. We have both read the booklet MDS Foundation and AAMDS Foundation sent to me. They have been very helpful. I also search the internet and try to be aware things that might help me to help Don.

Geri,

Don't be hesitant to ask questions that will help you understand, and help you help Don. It's not uncommon for the caregiver to be the one with the most questions. A good hematologist will answer the questions that either of you have. I consider it part of their job, just as I consider learning all I can to be part of my job as caretaker.

I know a few methods that can help: organizing your questions ahead of time, offering to leave a list of questions with the doctor, and asking if you can email questions. Most questions can be answered on the spot. For others, you might get the best answers if you let the doctor get back to you, or the doctor or treatment center may be able to provide you with materials that provide further information.

[Beth]

Hi Geri,

I certainly understand your confusion. This is one of the most confusing and complicated illnesses ever, to me at least. My husband was diagnosed in April and I am still learning. For a while it upset me too much to read.

My husband gets the Neulasta injections also but only as needed, not regularly. I really think he needs it more often.

How is your husband's abscess doing? I hope better.

My husband doesn't seem to want to know much either. I really think he is frightened to know and usually depends on me to do the research and then tell him.

Just wanted you to know I am thinking of you and hoping all is better for both of you now.

Beth

[Wattle]

When all of you people post and say which and what you have going on I just wonder. After at least 8 months! Shouldn't the Haematologist have found something out by now? All he's said that it's Low Grade and he'll watch and wait. It's been three month this time ,and last time since my visit. I did ask what it is and he just smiled. so much has been going on that I've put it all to the back of my mind, but now I'm starting to wonder again. If there's nothing wrong I want to know. To recap, I had a routine blood test that showed extra lymphocytes, then Flow Cytrometry after which my GP sent me to the Haem. He did more bloods and BMB. He said the marrow showed the same as blood. but wouldn't say what. Had CT scans, small lymph nodes but nothing else. All bloods normal except for ESR, high, last one lymphocytes in normal range, Alk Phos raised, Alpha 1 and Alpha 2 raised, no monoclonal banding seen. I'm tired a lot, have night sweats, some red spots, some tiny some a little larger. I know that none of you can have a guess, I'm just trying to make my mind clear for the next visit. He won't tell me anything and only gave me the "good" blood reports when I asked. I saw the "bad"" ones when I had the [papers in my hands. Do you think i should quit going? That's what I'd like to do, seems that it won't matter. Just venting again! Next visit is 20th November after more bloods. Wattle.

[Birgitta-A]

Hi Wattle,
Many members have alredy told you that you have to ask for the results from the examinations – blood work and all other examinations. You perhaps have to write and ask for a copy of your report with all laboratory results etc. No doctor can ignore a written inquiry of information.

There are special criteria that have to be fulfilled to diagnose MDS. Here is short info from page 35 in a long article:

Minimal Diagnostic Criteria in MDS
--------------------------------------------------------------------------
A. Prerequisite Criteria
- Constant cytopenia (few cells) in one or more of the following cell lineages: erythroid (hemoglobin <11 g/dL); neutrophilic (a kind of white blood cells) (ANC < 1,500/µL) or megakaryocytic (platelets <100,000/µL)
- Exclusion of all other hematopoietic or non-hematopoietic disorders as primary reason for cytopenia/dysplasia

B. MDS-related (Decisive) Criteria
- Dysplasia in at least 10% of all cells in one of the follwing lineages in the bone marrow smear: erythroid; neutrophilic; or megakaryocytic or >15% ringed sideroblasts (iron stain)
- 5-19% blast cells in bone marrow smears
- Typical chromosomal abnormality (by conventional karyotyping or FISH)

C. Co-criteria (for patients fulfilling A but not B, and otherwise show typical clinical features, e.g. macrocytic transfusion-dependent anemia)
- Abnormal phenotype of bone marrow cells clearly indicative of a monoclonal
population of erythroid or/and myeloid cells, determined by flow cytometry
- Clear molecular signs of a monoclonal cell population in HUMARA assay,
gene chip profiling, or point mutation analysis (e.g. RAS mutations)
- Markedly and persistently reduced colony-formation (+/- cluster formation) of bone marrow or/and circulating progenitor cells (CFU-assay)
--------------------------------------------------------------------------

I have understood that your hemoglobin was 131 but you have not written anything about the white blood cells (and specially the neutrophilic white blood cells) ot the platelets. If the neutrophilic white blood cells and the platelets are OK then you don´t fulfil the prerequisite criteria for MDS.

This article is long but very important for MDS patients:
http://www.hematologics.com/pdf/ref36.pdf

You can mail to me if you want to get an explanation of difficult words.
Kind regards
Birgitta
68 yo, MDS intermideate-1 dx May 2006, transfusion dependent, Neupogen 2 injections/w, Prednisolone 5 mg/day.

[Wattle]

Thank you so much Birgitta. That has made things much clearer for me. I have read all that before but somehow it has never MEANT anything. Now I can see that it would be very strange if I did have MDS! Maybe my own doctor's idea of "preleukaemia" and the rest of the worlds is different! So I will insist on answers and if he really still doesn't know I'll try to get the reports and see someone else. If he says it's something like that, what do you call it can't remember! then I won't bother about it , but I'll read abut that again first. I really appreciate all your help. And I'll let you know! Yvonne

[Birgitta-A]

Good luck with your doctor and diagnosis!
Kind regards
Birgitta

[Ger]

The injury Don received on his leg has certainly been interesting to say the least. Please if someone is more knowledgeable than me feel free to correct me on this one. As near as I can figure out the red rash Don had was probably petechiae, tiny pinpoint hemorrhages under the skin that finally covered a large area on the back of his leg. It has now progressed down the back of his leg and he has a purple bruise wrapping around the back of his ankle.
It does all seem to be slowly going away around the injured place but also progressing onto his foot.
He is now able to walk without limping.
Neil thanks so much for your encouragement I guess I do know that I will have to ask the questions, I really was hesitant to do that thinking the Dr would rather deal with Don instead of me.
Concerning medical record copies, I asked the Dr once if we could have copies of his CBC's and Dr answered that he is only the keeper of the records that they belonged to Don. Well that time we still did not get any copies so the next time Don was to see the Dr., when the medical asst. came to take his BP etc. I asked her for the copies and received them right away. So perhaps that is the best way to handle the records requests.
Thanks everyone for your input on this issue...it seems that with MDS there aren't any easy answers.
Geri

[Wattle]

Ger I hope the bruising finally subsides. It was strange how his looked. I bruise easily, but I've been on Clopidrogil for ages for my heart. And I read that it's a treatment for one of the MDS things. can't recall which.<G> Must have been bleeding after my colon polyps were removed because I was told by the surgeon to leave off the Plavix for ten days after as well as before. Don's pattern of bruising , going down the ankle and wrapping round the back of his leg will be because of gravity. That's why we get swollen ankles at the end of a day standing. I hope it all clears up soon. If he has any numbness in the leg or foot he should get help. and keep it up as much as possible. All the best, Yvonne