New to MDS diagnosis

[katydid]

Just got a diagnosis of MDS – intermediate 1 and wondering if there is anyone else out there in the big world who is newly dealing with the news and trying to get their head around it all ?? – or any of you ‘old hands’ who have got stories to tell us newbies

Cathie

[Hunter Bob]

Hi Cathie – My husband was diagnosed with MDS-Interm. 1 in March. His Red Cells count, White Cell count and platelets all have been very low from the beginning. It took 4 months to finally get it diagnosed. We first realized something was very wrong when he was out of breath just walking to our mailbox and read a CBC report that his platelets were 40. Went to a Hematologist, got a bone marrow test and was diagnosed with MDS.

Read up on what the CBC blood test readings are and what they mean. Things they’ll be watching are hemoglobin (deal with red blood cells), ANC (listed under #neutrophils – these are within the white cells; the infection fighters) and platelet numbers (help to clot your blood).

Bob was started on Procrit right away to try to boost red cells, but counts continued to drop – several blood and platelet transfusions. They started him on chemotherapy on June 1 – it was supposed to be 6 months of ’rounds’ (treatment, down time, then start treatment again).

Right now he’s fighting an infection in the lungs because everything dropped so fast, so will have to wait for the infection to be conquered and his ANC to go up to .5 before they’ll let him out to start chemo again.

Take care of yourself, ask questions, read everything you can. Knowledge helps you get through this and be aware of what you should do to stay well.

Hunter Bob’s wife (Karen)

[ccpat]

Hi Cathie. We are also "newbies". My husband, age 64, was diagnosed in Jan. with MDS/RCMD. He’s had one round of Aranesp, eight weeks of Neupogen. His Hgb is in the 8’s, ANC is now around 100 (which they told us at Stanford is "zilch"), so we are living with Neutropenic precautions and fear of infection–while he feels fine. My question–do these infections just "appear" all of a sudden? We have to travel to Stanford (3 hour trip) again tomorrow for another BMB to see what’s going on. Brother and sister are perfect matches for BMT, Vidaza is in the offing if everything else is OK. Hang in there Cathie, there is a lot mystery surrounding all of this! Maybe our questions can be answered on this forum!

[katydid]

thanks for your responses. It is amazing how much you guys know about all the details of counts etc. I have had one transfusion and they are in the process of tissue typing my siblings for a match for a bone marrow transplant. I wouldn’t have a clue what all of my blood tests say – just that my heamoglobin is really low – next time I am at the hosp I guess I will ask for a print out so I can quote some numbers like you guys !!!
They have said because I am young ( I am 51 – this is the first time in years I have been called young !!!! ) that the preferred course of action is the transplant so I have no idea about any of the drugs that you mention. I guess I had better start writing a list of questions to ask !. How have you all found the reactions of family and friends when you told them about the MDS ??

[g-masews]

First off, you will learn. Few of us had any idea of the numbers, terminology etc. until we asked and read and researched. So, you’re on the right track just being on the forum. Always get a copy of everything: labs, counts, biopsies etc. Even if they make no sense now, they will eventually and you need to have the records. You’re age is a good factor for a transplant (under 40 is even better) as many people aren’t diagnosed until much older, however, I would suggest you don’t rush into any decision until you are much better informed. A diagnosis of Imed.1 probably means you have a low blast count and, therefore, have some time to really get to know what you are dealing with. Dr’s. will tell you that transplant is the only cure, which is correct, and many people hear only "cure" and need to also hear risks involved. My husband was diagosed 4 1/2 years ago with Imed.2 and given less than 2 years to live. He is still doing fine with no treatments whatsoever, so it is possible to do much better than the statistics predict. Just take some time to let it settle in and get your bearings.

[jaxem]

cathie
several other kiwis responding here. maybe some will correspond once they hear about you. you will hear the catch phrase, "everyone is different" with this disease. g-masews’s husband disease is fortunate as most progress at varying rates. continuing cbc & marrow biopsies will show progression & hopefully yours will be like her husband’s. I recommend getting a recorder to record what docs are telling you. ask questions that you have written down. most docs will spend the time with you. reactions from other friends & family vary. most don’t understand what mds is. when explained that mds can be a prelude to leukemia, the reaction is to offer sympathy. only empathetic sufferers & caregivers can understand what you are going through. being so young is a positive. I truly hope you get a match from a sib. stem cell transplant is the only cure.

[katydid]

hhmmmmmmmmm thanks for taking the time to talk to me but I guess I am looking for conversations that are more about the process and the feelings than about the numbers – I understand that it is important to know where you stand medically and to have a handle on all of the relevant data – but for me it is much more important to know about who you are as people – not medical statistics or numbers
Cathie

[Esther]

Hi everyone,

I am Renée and Cathie is my daughter. I joined because I too need to learn what I can about this group of diseases – for the whole family of course because the ripple effects so far are quite wide with my 3 other adult offspring being tested for a match etc.

I apologise for having two ‘names’ here – I somehow thought I had to have a nom-de-plume instead of my real name, hence the ‘Esther’ on my post. Have tried to change it in my profile but not able to do so!

It gets confusing to read that someone is diagnosed and then continues to feel well for over 4 years without any treatment at all (and wonderful news I might add) and it does make one ponder about rushing into a transplant should a good donor be available fairly quickly. So would all you wonderful people who have taken time to reply to Cathie collectively be tentatively suggesting a ‘wait and see’ policy as her diagnosis is so new??

Of course I know none of you would offer direct medical advice unless any of you are health professionals so opinions are, I guess, what I am looking for.

Thank you to all who have helped so far and I reckon Cathie will probably have a list of questions as long as her arm when she next visits the consultant.

Renée

[katydid]

Hi, I am Graeme the magnificently handsome husband of Cathie. I have been reading stuff about MDS and I stumbled on this notion of ‘mini transplants’. In my innocence and wish for things to be as painless as possible I immediately thought this was the solution….all will be well and there will be no pain. Yeah right. I now realise that this is a pipe dream…….or is it? Does anyone know anything about mini transplants?????? Can you please share your wisdom?

[Ally]

Graeme, it is nice to see that Cathie has a caring and supportive family. A mini-transplant refers to a "non-myeloablative" transplant. Like a "myeloablative transplant" it requires a bone marrow or stem cell donor (a matched sibling or unrelated donor), but a more gentle preparative regimen is used. "Preparative regimen" refers to the radiation/chemotherapy used to prepare the bone marrow to accept the transplanted material (graft). The non-myeloablative transplant has not been used as long or extensively as myeloablative, so it is still considered fairly investigational. It does not completely obliterate the patient’s own marrow or immune system. In the period following the transplant, the patient’s own cells and the new graft cells will coexist with the hope that the donor cells will become the predominant cells and start producing healthy blood cells. It is offered to an older patient population (60’s and up)in general, because it is more gentle and better tolerated. At 51, Cathie is young, and may be offered a full myeloablative transplant. Most MDS patients are older and don’t have that option. There are many factors to weigh when considering a transplant of any kind. For intermediate 1 patients the decision can be especially challenging. Blast count in the marrow, chromosomes, # of cell lines decreased (e.g. factors in the IPSS scoring system), pace of disease, and the patient’s performance status and other health issues will all be considered by the transplant team when making a recommendation.

[katydid]

thank you Ally, that is a wonderfully considered and well presented answer. I truely appreciate your efforts and feel a tiny bit wiser.

[katydid]

thank you Ally, that is a wonderfully considered and well presented answer. I truely appreciate your efforts and feel a tiny bit wiser.

[katydid]

Hey Karen – sounds like you are going through the mill – how is Hunter Bob ??
Cathie

[katydid]

Ally – thanks for that – it makes sense to me – and finally to Graeme !!! we will do our visit to the hosp on 5th Aug and ask our questions – Graeme may be a little less certain about a mini transplant !!!! – and I finally understand that as an ‘intermediate 1 ‘ I am on the edge of several options and the deciding where to go next is very scary .
So , my siblings have now all had their tests and we await with bated breath the results !!!!
Karen – hope all is ok with you

Cathie xx

[Hunter Bob]

Hi Cathie- He’s still fighting, still in the hospital. Next week maybe a lung biopsy as another way to check to see what the infection is. Also another bone marrow test to see the progression of the MDS.

He’s 5 days short of fighting the infection for a month now – all the time in the hospital.

We’re both scared and hoping for answers. Realizing science isn’t fast like technology – it still takes a lot of time for cultures to grow in the labs to get answers.

Bob has a great team of Drs. working on his case – all are very compassionate, take time to talk and listen. That’s one thing I tell everyone: our hospital and all their staff and our physicians are excellent – we couldn’t ask for better care!

We were told there are only a few ways to treat the disease, which they can do, but it’s the ‘other stuff’ that can occur because your system is so compromised from the disease that will probably cause the most problem. This is what we’re experiencing with the infection Bob has – it’s not MDS that put him in the hospital, but the ‘other stuff’ that can occur because his immune system is compromised from the MDS.

Take care – good to know you have family support – read up on everything so if/when your Dr. says something, at least you’ll know you’ve seen the words before. It may help you to ask questions at the moment.

~ Karen

[Author]

Posts