New to MDS diagnosis

[Hunter Bob]

Hi Cathie’s Mom: We experienced people’s reactions as: ‘you don’t look different’, ‘you don’t really seem sick’, ‘my sister was anemic and they gave her iron pills-felt better pretty fast’, etc. They don’t ‘get it’ until something else transpires (like Bob’s lung infection) – they know somebody who has had that.

Bob and I have been thinking back into his past trying to figure out what may have triggered this disease in him. Still no idea for sure.

Always lots of questions: ‘what are you going to do to treat this’, ‘how will I feel’, ‘how long before something else happens (or nothing happens)’.

In June when Bob was at the Dr.’s office and hospital so often with transfusions and chemotherapy, he said ‘he was really getting tired of this doctoring business – wanted to go do his usual stuff like fishing’.

Do your ‘homework’ – research the Internet, ask questions of the Dr., get a second opinion if you wish, read read read everything. See a specialist – a hematologist or oncologist.

I can’t imagine someone getting diagnosed and feeling better for 4 years without ANY treatment, only because a person’s blood counts usually need attending to in some way, but I suppose anything’s possible with MDS . . ..

Good luck to all of you for Cathie. Take care and be informed.

~Karen

[Esther]

Karen, thank you very much for taking the trouble to reply to me – it is certainly appreciated. As is all the information you and others have provided. I certainly had not taken on board the possibly increasingly compromised immune system and all the implications thereof.

My thoughts are with you and Bob and it would be wonderful if his desire to go fishing could be realised in the not too distant future.

I didn’t intend to participate overly much here but it was necessary for me to register to actually find out what discussions were underway – and of course because I wish to educate myself too. It is certainly a disease with far reaching ripple effects – and one that one would wish to have remained ignorant about.

Thank you again.

Renée

[katydid]

Hi Ma – and Karen
Yes , SO – INFECTIONS, – Jeff on one of the other threads said he needs to wash his hands alot – which I am assuming is a reference to a compromised immune system – which is something I haven’t yet even thought about because I feel very well – if a little tired at the moment – bugger – is this yet something else I now have to worry about – coughs colds infections – do I have to become hyper vigilant ???? I see lots of people are reading this thread but only some are writing anything – please – say whatever feels right – you are welcome here x
Cathie

[Hunter Bob]

Washing hands often would do a world of good to everyone to keep from getting colds and flu (I’m sure you read about the global virus that started in Mexico) . . .but as MDS progresses and your #neutraphil counts/white counts decline (if they do), washing hands is extremely important.

I hope you are able to feel well and your treatment(s) that your Dr. recommends are helpful.

Bob is to have a CT scan of his lung today to see if it is re-filling with fluid and possibly a lung biopsy Tuesday because he still gets a little fever so they haven’t gotten rid of the infection completely.

Take care – Karen

[g-masews]

hi, my name is Sherry and I’m the one with the husband 4+ years into this. I originally posted mainly to reassure Cathie that all decisions didn’t have to be made immediately and to give herself some breathing room. I don’t post often anymore as I am very aware that my husband’s case is not the norm, but I "oh, so remember" all our initial feelings and heartaches at the beginning. You asked for people’s reactions, so I’ll give you a brief overview of ours (at least I’ll try and be brief).
My husband got cellulitis in his leg in Dec. of ’04. It was spreading rapidily, not responding to conventional treatment so my husband asked for blood work to be done. That, of course, led to a BMB which was not good and a diagnosis of RCMD with complex chromosomal abnormalities. Our dr. felt the only way to go was a transplant, that his type of MDS would progress quickly and that the cellulitis was the beginning of the end, so to speak. You can imagine our shock (you’ve been there), especially since once the cellulitis was cleared up, he was the picture of health. Our decision to not go the transplant route was based somewhat on statistics, but mainly our particular situation. Our insurance, at the time, contracted all transplants to City of Hope in L.A. and we live in Colorado. He would have had to leave his job and I am self-emp. which meant closing my business, moving away from family and all support systems, and living off retirement savings (he was 54 at the time). He chose not to put us in that kind of financial bind, especially with only a 30% chance of survival or cure. That was our decision based only on our particular situation and I don’t make any recommendation one way or the other to any one else. He chose to moniter his counts every three months and treat supportively if needed. I read, I researched, I prayed, I corresponded on this forum etc. He gave it to God and hasn’t looked back.
His counts remain stable to this day. RBC stay 10. – 11. therefore he has never needed a transfusion (I believe living in Denver, he’s used to no oxygen), WBC 1.0 – 1.5 (absolute neutraphils .5 – .7) but he has not had another infection since diagnosis and the only change is that his platelets are dropping slowly to about 30,000. now. That, they can do nothing about until they hit a dangerous number. So, that is why I say he has had no treatment. We are very aware that is not everyones story and that our turn will come, believe me. Dr.’s say they can’t know more without another BMB but he won’t let anyone touch him and maybe "disturb something". Anyway, that’s where we are at. I check in on the people here and remember you all daily. Thanks

[katydid]

Sherry – thank you so much for your full account of what has been happening for you – and your description of what you had talked about in your earlier response to me – for which I thank you. It is all so hard, I think we are all so brave and tend to be so careful in what we say. I hope that you and your hubbys choices are not determined by insurance requirements . It s so different for us her in N ew Zealand – where we get free healthtcare regardless of our insurance or ability to pay. We live on a small island but are only 35 mins ferry ride from the biggest city in the country so only 40 mins away from the best Heamotology service in NZ – and that is what I can access – it makes my heart bleed to relaise how hard it is for some people to have that kind of service – I feel very lucky.
Please keep posting Sherry – I really want to know how you guys are going xx

[Laurie H]

Katydid & all those with MDS,
You have come to the right place for information. While you are not getting a medical professionals take on your diagnosis, you are getting enough information that you can make an informed list of questions to ask. MDS even with in each sub-type manifests itself in so many ways—no two are a like it seems. I was given misinformation when I received my diagnosis which in turn delayed my need to search for information. When things didn’t add up and my health was going down the tube I began questioning. When I didn’t get the answers from medical professionals I searched the internet and what I found wasn’t pretty–it scared the devil out of me. I found this website and I spent days pouring over all of the postings and came up with a huge list of questions to ask simply taken from the experiences of those I read about. My Dr. said that I shouldn’t depend on this information but I disagreed. It was my feeling that Dr.s do not deal with MDS first hand and all of you have lived it so you know what you are talking about. Dr.s usually don’t go into MDS & all of its ugly little secrets…all the things on the side that can come up that can be related or caused by MDS. Each time I read new post I learn more and add more questions to my list. I have recently changed oncologist and the new one is very aggressive and not put off by my unending questions and need for more information. I question every thing they say and every form of treatment. I was diagnosed in 2007, however, I played the wait and see game for 2-3 years before that. Now that I have changed Dr.s I am more at ease about what to expect and able to make informed decisions about my health care. I am no longer afraid to ask questions and even more so, I am not afraid to hear the answers.—Thanks to all who post in this forum.

[katydid]

Thanks Laurie – I am with you – whatever is how it goes – I just need to be honest with me and every one else along the way – it is not dying that scares me but dying needlessly – because I didn’t ask the right questions – so yes – that is where my head is
Cathie

[mtair37]

Not sure I can be of help but my husband was dx almost a year ago with MDS/MPD they did 2 rds of chemo which did not help. We finally went to Huntsman Center and he is under going a clinical trial for clofarabine. Right now he has tolerated it well and will start the 5th rd next week. Not too many people have got through this many. This is a pill form and a low dose. He is staying pretty stable right now, and except for the extreme tired feeling all the time, is doing fair. He has shots of arinasp every 3 weeks to help with the counts. We have never been given any prognosis so are not sure what to expect. He is too old for BMT as he is 72. Since he was always very active it is hard for hi to deal with emotionally sometimes. But we try to stay positive and keep as active as possible. He does get short of breath easily and we watch for signs of any kind of infection. Hope all goes well.

[katydid]

Well I saw the doc and will have another transfusion within the next week or so and another bone marrow biopsy in the next 4 weeks. I have 2% blasts and minor chromosomal damage. None of my ( 3 ) siblings proved to be a tissue match so they are now looking on the world wide donor programme for a match for li’l old me – I am 51 by the way – so feel like minnow in age compared to some of the people described here. Funny though that as far as I can tell most of you are spouses of the afflicted ??? Eve on the other forum told me to stop burying my head in the sand – I think out of everyone I know that I am the one who is most facing up to what is happening to me and the least in denial about it – so I don’t want to go all dramatic on anyone but really – don’t tell someone who is actually sick to face reality – I am living it and I don’t need to be told

Cathie

[ltlgiant]

I recently posted a comprehensive YouTube video explaining MDS from a patient’s perspective. It is linked to the Foundation’s site so you can easely access them (3 parts)Go to the main MDS-Foundation.Org opening page, click on the "links" along the left side of the page and select the three parts to view (lower right side of listed links). I hope this will help you to understand this disease better.

Ray Malles

[Esther]

Thank you so much for that Ray. For some reaon I am having trouble with the sound on your videos but that is probably either my computer or my ineptitude!! I will sort it out. However I can see that visually it is most beautifully presented and I look forward to reading (or I should say hearing) all three volumes in their entirety in order to learn from your knowledge!!

Renée (Cathie’s Mum )

– funny that – I have always wondered why it is ‘Mom’ in the USA and ‘Mum’ in some other places!! Doesn’t really matter – the relationship is the same – lol)

[ltlgiant]

Dear Cathie’s Mum:

If you are using a laptop, I have found the speakers are very poor to hear anything worthwhile. The only solution I have found is a pair of external speakers with a volume control. They would plug into the "earphone" plug. They would be a good investment.
The sound on Part 3 of my video is not the greatest BUT I decided to use it anyway. It is another patient interview done in a meeting room after a Patient Forum in MD. The background voices are somertimes heard. I wanted the words of another patient other than me. If you ever have the chance to attend a FREE MDS-Foundation Patient Forum in your vicinity, you and other affected family members should go. I have attended 7 and learn something from other patients at every one.
Ray

[Esther]

Hello again Ray. Thanks for the suggestions – I don’t have a laptop though, just an ordinary computer with built in speakers. I have noticed quite often when trying to watch videos that I am straining to hear what is being said despite my volume control up to the fully-on position. Anyway Friday my younger son is coming to stay for a couple of days – he is our family IT whizz kid so I will get him to see if he can help with the problem.

It would be very unlikely that there are any MDS Forums (as in meetings rather than message boards) here. We are a small country of only 4 million people (including many Americans who have discovered our beautiful land and come to live here)and as this is considered a rare disease (hope I am correct in saying that) there probably would only be a few people scattered around the country who are experiencing this. Perhaps there is a need there that could be addressed and I will suggest to Cathie that she ask her haematologist what would be the number of MDS sufferers in New Zealand.

Will let you know if I can successfully access your videos – and thank you again.

Renée

Edited to rectify a spelling error!

[ltlgiant]

Renee:
I hope you can diagnose your sound problem.
As far as the frequency of MDS new cases, the official number is 30,000 per year. I learned at one of the Forums that a doctor who works exclusively with MDS doubted that number. He undertook a one man study of blood results for "tons" of patients who were not diagnosed. To his surprise but as expected, he estimates the figure should be in the 100,000 range. Simply stated, too many physicians know nothing about the disease and its symptoms. That’s mainly why I did my video to try and fill the wide gap in knowledge. I hope you get to see and hear it soon. It is an eye opener.
As far as attending a Forum, keep your eyes on the Foundation’s main web page as they list them there. You may have to travel to a major city to attend but it is worthhile.
God Bless,
Ray

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