for only we who have MDS

[maggiemag]

Katydid,

A CBC is a complete blood count, where they get your hemoglobin and white cell count and hematocrit and all from. A VERY important blood test! I have actually started a spreadsheet with my CBC info on to keep track easily and look at trends. I have found, through my other diseases, that it is really important for us the patient to know our stats as the physicians have so many patients and can’t remember everything. Their records may be sketchy even with the best of intentions. We can save ourselves some unnecessary labwork or other tests if we keep current records. Being an RN anyway, I am compelled to know! Knowledge is power, after all.

I have some sort of upper respiratory infection right now. Most of my symptoms sounded exactly like H1N1! I was talked into seeing my primary physician today to make sure, and I don’t have it! Being at higher risk to start with, plus being on Prednisone means I have to be more careful. Ugh.

Hope all are having a great day!
Mags

[ltlgiant]

Mags..
Went to an MDS Patient Forum yesterday and learned the Foundation will give us the capability to track our blood work, etc. on their site. It should be available in about 2 weeks. This will help me because I spend approx. 6 months in Pennsylvania and the other in Florida. This will make records easier to share with each facility.

Ray

[katydid]

Hiya
good to hear from you Mags – and to hear that you don’t have the swine flu !!!!
I am feeling better – am concentrating on getting lots of sleep so all good. Off to hospital appt. on wedneday – so may have another transfusion then. Also waiting to hear when then have scheduled my next BMB in – how many have other people had – this will be my second. And when they do it again do they use the same site or do they choose a different one. – can still ‘feel’ where they did it last time
Cathie

[Laural]

Hi Cathie,
I lost count a long time ago on how many BMB’s I have had over the past 23 years. They are rather limited as to where they can biopsy…the posterior hip seems to be the favorite. You can ask them to use the opposite hip if possible. I have also had sternal taps, but only rarely. I do get lingering hip pain near the sites and some scarring over the years, but a small price to pay to keep a good picture of where the disease is at and how treatment is going. School is in full swing here, as well as soccer, kids’ church groups, my daughter’s volunteer time at a therapeutic riding center, teaching one to drive, etc. etc. Trying to keep up on rest, and washing hands lots to avoid all the germs my students bring with them. Have a great week

[katydid]

Hey laurie – great to hear from you – and your busy busy lovely life !!! I am such an innocent – on my second BMB and I feel hard done by !!! – you are truly amazing !- tell me , why do you fight so hard not to have a bone marrow transplant ??? What are your blasts currently ?? – I am intereted in everyones blasts !! what level do you really really worry !!! mine are only 2% and I have read that at 20% you are considered luekemic

And yes – I will tell them to use the other hip bone

They are looking for a bone marrow donor for me – what the hell do I do folks – do I put it off – do I say yes , do I say maybe next time ????

Cathie

[katydid]

PS – Mags – how many BMB have you had

Bergit and Zoe – would be fab to have you in this conversation
– how are you both doing ??

Cathie

[Laural]

I am very hesitant to go the bone marrow route as there seldom is a second chance if it fails and often quality of life is greatly diminished for a long time afterwards. The stats, especially for those who have a secondary MDS, are very dismal. Be very careful to look at not only how many are disease free after the first and fifth years, but also how many end up with major Graft vs. Host Disease or succumb to other infections (these people often are counted in the "disease free" stats as they have no active MDS, just many other issues). With drug treatments, I have been able to keep this disease at bay and still maintain a decent quality of life. If one treatment doesn’t work, usually I have been able to try another. If a bone marrow doesn’t work, it is usually the end. I currently have 5% blasts, but they are staying at that number. This decision is only my decision, though. I know there are others out there who have followed the BMT route. I believe they would have different input. Everyone is fighting the same disease, but each of us has a different course and path to do so, and each person’s body will react differently. Praying for you as you face these tough decisions.

[katydid]

Good news for me today to share with you all – heamoglobin steady at 9.5 fo over 3 weeks ! blasts at 2% – next BMB in Nov. But – and big but – they have found me a donor for a transplant so in the next 3 months have to make a decision if that is the way to go – I am 51 so not a big window of opportunity -interested in what you think

Cathie

[maggiemag]

Great job, Cathie! Stability is a good thing in this business. My Hb today was 11.1, so I am also holding steady. It’s still very early in the game for me with the RA and 5q-. I have only had the one BMB so far as I was just preliminarily diagnosed in May of this year. I must be atypical as I did not find it to be a big deal. On a scale of 1 to 10, it was maybe a 4 for about 8 seconds. They kept telling me to take deep breaths and were patting my shoulder, and that I would feel a lot of pressure, and I never did! Thank you God. I hope the next one is as easy, but this month I have dodged it once again.

As far as a BMT, I would do it if they recommended it and if the donor was good enough. I would go to a major center that is the best in your country, even if I would have to travel a bunch. The best ones have the most experience with all the complications. If you choose to do this, you might want to start reading the Leukemia and Lymphoma Society message boards. They are extremely supportive and knowledgable. They are very positive and there are numerous 5 year survivors for AML, for instance. The MDS section of that board is not very active, but the BMT section is very active. You might want to check it out if it doesn’t scare you too much!

Hope this helps!

Mags

[Mary4Mike]

Did anyone else receive an email saying that the forum was closing? I did today and it came directly from the MDS foundation. Am I the only one?

[katydid]

Thanks for your support Mags – I intend to do the research over the next couple of months !

Mary I haven’t heard anything – I hope its not true as this is the only pure MDS website I hae found
Maybe they got cross that we squabble sometimes !!!!???

[katydid]

I think they have jut revamped certain aspects of the forum for security reasons
Though I notice that what was named only for us with mds has suddenly become ‘end of forum’ – so don;t know what that is about

Cathie

[katydid]

since I haven’t heard anything from anyone maybe else ‘they’ ( the forum ) is closing us down – why – are we danger of starting to tell the truth ???? or maybe in america they can’t get hold of enough $$$ to keep this going ?? A comment from the admin team would be welcome – particularly about why the name of this thread has changed ? to ‘end of forum’
Cathie

[vickinish]

Not sure what you are talking about Katydid. The name of the thread has not changed and people are still posting to various threads.

[katydid]

On mine this forum is now called ‘end of forum’
Cathie

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