Do I or Don' I ?

[katydid]

I have read all of these replies and I am ovewhelmed by so much of what is expressed
Laurie and Mags – so wonderful to meet you – so amazing and wondeful for me to hear from people who have what I have – what we all have – such a [censored] of a diagnosis ah ? no one has heard of it and as Laurie says – we look so well – at least at first – that no one gets what is going on for us us under the surface. And Mags – fa from making things worse your wods are so welcome to me – I think those of us who have this damned thing love those of you who care for us so much that sometimes we shield you from the truth of how it is for us – we feel so so alone sometimes – not because you leave us alone but because , in this , we ultimately are alone. We face what we have every minute of every day – and if Laurie and Mags are anything like me – we fear most what this is doing to the people who love us – I said to someone the other day – the hardest thing of all is that all of a sudden people treat you different – they are not sure what to say – or whetehr to say anything at all – I saw a close friend today – first time I have seen her since being diagnosed – she knows what is happening because of the emails – but she didn’t mention it – others ask how are you – and smile and love it when you say – I am doing ok – and take that as their cue to ask no more – I don’t blame them – I know they are doing th best they can but my point ( and I do have one !!!) is that suddenly people treat you different – hence my reference to the lepers bell – suddenly we stand outside what was normal interaction for us in our lives. I started this ( when I got the diagnosis ) thinking – I will not shirk from telling people – I will be brave and tell people what is going on – hey guys big big mistake – that arritude affects your employment , your relationships, your friendships, your ability to get insurance, secure a loan, relate to your children ( graeme and I have 3 daughters and a grandson and another one on the way ) – if I was to take on board all the ( I think american rules ) then I feel like I would be a total outcast. I am the main breadwinner in our family and I quickly realised that I can’t be honest and clear with everyone. And I sure can’t expect that people will not come to work if they are sick, or use disinfectant – I more get the idea that they think that if I am the problem then it is I who should disapear not that they should change their behaviour. And as for the anger thing – then yes I am angry – I am only 51 and I am bloody angy that this should happen to me – and I join with Laurie and Mags – we know you love us and that you would do anything necessary to help – in the end – just treat us a syou always did – love us , be cross, say what you want , and tell everyone else to do the same – then – maybe – I will be able to actually tell you what I am feeling and what I think – in the meantime – god bless my mum – because she more than anyone got this and no matter ow hard it has been on her she has not been any different with me ( yes she still gets cross with me if I stp out of line !!! )
Thank you all so much for this opportunity to say what I thin
My love and prayers are with us all

Cathie

[maggiemag]

Cathie, I think the worst part is when you realize that we aren’t talking about someone or reading about someone else………OMG it is ME who has the disease! Like you said, we are ALONE in this, really! It’s just so different than talking about Great Aunt Betty or your next door neighbor who has some really serious illness; it’s ME!

But I have been through this kind of thing before, unfortunately. In 2002, I had to abruptly quit working due to a severe cardiomyopathy, which is a heart muscle disease. I was told I would need a heart transplant eventually. Well, guess what? They were wrong! I did get social security right away though. My reaction this time is *what now*? Only picture me screaming this! 🙂 I told the heme that I didn’t want to have to learn another disease! Heme/onc was never my area.

I will say though, that whatever I have, it is early and may not progress for years. Or it could be 3 months, who knows? And the other good news is that I actually have an identical twin! So I have the perfect match should I ever need a BMT, if I’m already not too old by then!

You are right, Cathie, about the still looking fine thing. People look at you like you are exaggerating a tad. "Well you look fine!" I have actually resorted to showing family members lab reports and my bone marrow biopsy report. When I was fist diagnosed with the heart thing, and I was in bad shape then, I did lose a bunch of friends. They just disappeared, never to be heard from again. I don’t know if they were afraid they might have to do something to help me or what. It was a big slap in the face, I felt. But then they weren’t real friends I guess. I had no family where I lived then. I eventually did move back to Ohio where I grew up and have 3 sisters.

So I am glad you are feeling better about this site, and we are all on the same page! Keep us informed.

Mags

[jnos]

Hello to everyone..I am new to this forum and unfortunately new to MDS. I still can’t believe this. I posted a thread yesterday titled "I have what" that tells a little of my story. Bottom line is that I’m 60 years old, with a full time job and am caregiver to my 87 yr old Mom who lives next door to me. I found out in May that I have MDS (RARS). I have had a second opinion at Northewestern Memorial Hospital in Chicago and was told the median survival rate for me is 10 years. A few questions: has anyone taken Fosomax for osteoporosis? I was taking it, but was told by a family member to stop taking it…does it cause MDS? She made me feel so guilty about still being on it. Both doctors have told me to keep taking it. Also, should I go further for opinions? Mayo Clinic, MD Anderson in Houston? I have a sister who would be willing to see if she was a match for a BMT, but I am not yet sick enough. Isn’t that sad that we have to get sicker to try to get better. I realize that quality of life is paramount, but I just want this to go away!

Thanks for listening.
Janet

[maggiemag]

Hi Janet!

Is your family member a physician who is telling you to stop the Fosomax? Or better yet, are they in oncology? If not, do what both your doctors are telling you to do! I recently started on Boniva for osteopenia and no one has told me to stop that.

You can check with the MDS Foundation but I think your second opinion hospital is on their list of MDS centers. My brother lives there and I had thought about traveling there for another opinion. At this point I would stick with that one, personally. But that’s just my opinion. 🙂

Mags

[eve]

to cathie’s mom

please re read the posts

it is not I who had a chuckle

this disease never has or never will make me chuckle

eve

[Esther]

Dear Eve,

I can’t find the comment again that I attributed to both you and HunterBob’s wife so it looks like it is totally my bad!!

I apologise genuinely and unreservedly!!

I guess tempers get a little frayed now and again when dealing with this wretched illness – and no, there is nothing remotely to ‘chuckle’ about!!

Regards,

Renée

[jnos]

Mags, Thanks for your reply. It’s my sister-in-law that wants me to stop taking the Fosomax. She’s thinking it goes right to my bones, therefore bone marrow and that’s what’s caused the MDS. I wish it were that simple.

Janet

[katydid]

ah if only it were all that simple !!
– Mags so pleased you responded – will write more when I am in a better space

Cathie x

[noni46]

Jeff,
I am new to this forum. Want to find someone that is in the same boat as I am. 1st BMB said MDS could not be ruled out. Second one, only have prelimenary findings. Nurse said it looks normal. My blood counts are very similar to yours. If there is anyone else in limbo..Please help I am getting tired of being jerked around!!

[Darrell Clark]

noni46

I have been getting regular check-ups subsequent to the excision of a soft tissue sarcoma 3 years ago. last summer my oncologist noticed that my blood chems were a bit low. A BMB was described as being "consistent with MDS." A second opinion labels me as Intermediate I. I guess I’m in the same boat as you right now. Not enough symptoms to treat. Just "watchful waiting" and regular bloodwork. Could be 2 months or 10 years. I discovered this board and follow with some regularity. It’s encouraging to see those who have gone quite a few years with successful management.

As a Christian, I have a faith that allows me to have hope for the future, as well as comfort in the present. I am thankful for the present stable condition and will try to enjoy it as long as it lasts. My prayer is that you will find comfort in the midst of what could eventually become a very trying situation.
Take hope from the other posters here and, as my doc says, "The longer you go, the better the chance of improved treatments."

[Mary4Mike]

Darrell,
Welcome! It is good to hear from someone with the same faith views as us. It has sustained us through this MDS process and life in general.
As you can read from my signature, Mike was diagnosed 4 years before he received actual supportive treatment (packed RBC TXs). Initially they tried Procrit and then Aranesp, but there was really no improvement using them. When he was first diagnosed there were no other treatments. As you probably know, in the last few years 3 new drug treatments have come along. We had a doctor tell us that he could Mike alive a long time on blood transfusions. Still, the only "cure" is bone marrow transplant. In the beginning, our reaction to that was "No way". Well, never say never. After trying all of the above, we decided to go for it. With Mike it was a quality of life issue. So far, it has been a wonderful choice for us. His quality of life has been dramatically improved. We put everything over to the Lord and never looked back. He told the transplant doctors that either way it turns out he is a winner. If it works, he is cured. If it doesn’t, he will be with the Lord.

You are correct in saying that it could be years before you will need any treatment. Just take care of yourself and don’t get too tired. Stay in touch.

Mary

[noni46]

Darrell,

Thank you for your response. I really need the support from others who are going through this same thing! I hate to bother my husband with it.

My doctor also said it could be tomorrow or it could be 10 years from now. Dr. performed a predisone callenge and my neutrophils fell even more. That’s what alarmed him. I just want to know if I definatley have it or not? My hemotologist said I do. But from what I could tell from the BMB labs, everything looked normal. Just all my blood work over the last 6 or so years have been slowly dropping. And the BMB said MDS could not be ruled out. Redo a BMB if clinically warranted.

I am just very confused and very tired all the time. I want the old me back.

Hope you are doing well! Please keep in touch!

[Darrell Clark]

noni46/Mary

Thanks for your comments. Mary, I have followed your posts in recent months and admire your strength. Of course, we know where that comes from.

noni, I wish I had information for you, but I’m new to this myself. Like you, my blood tests have slowly dropped over the past few years. They are not so low at present to require any treatment and I feel good. We can only take a day at a time and try to stay positive.

Best wishes to you both, and my prayers are with you.

DClark

[Hopeful]

noni46 and Darrell,

What is the cellularity of your marrow? Do you have blasts or significant dysplasia? Have they ruled out aplastic anemia?

[Josi]

Hi Everyone,

I am impressed by the courage and strength that that is evident in your mails.

I joined up hoping for answers. The answer I was looking for and was pretty sure someone would have screamed out ‘Its a misdiagnosis’ but reading through this thread somehow brought up all the feelings of extreme helplessness and fatigued sadness that I was engulfed with when I was given the MDS verdict on 30th March 2010.

A bit of the background : I had been plagued with a chronic slipped disc condition for the past 3 years. In Sept 09 I was informed of redundancy. I took all the annual leave and went away for an intensive inpatient complementary medicine treatment regime for 6 weeks, which brought me effortlessly into the end of work in mid Jan 2010. This treatment necessitated bed rest for 3 months (i.e. till April ) as it claims to loosen all muscles.

Anyway by mid Feb as a result of eating some dodgy food, I contacted a horrendous gastric episode and was admitted to the hospital for 4 weeks in March. They could find nothing wrong but I could not eat anything but a teaspoon of jam and 2 tbsps of boiled potatoes a day. Much loss of weight, dehydration, anaemia and a thorough psychiatric evaluation later, they performed a BMT and concluded MDS – refractory anaemia. I was stabilised and discharged on 2nd April. Along with the gastritis I had a urinary tract infection which has resolved. I was also told that I have high levels of lead in my blood.

My stomach decided to mend itself and in the five weeks since the diagnosis my haemoglobin jumped from 8.3 to 11.7. So on 6th of May when I went in to get a result for erythropoietin response (?), the consultant told me that my Hb was back to normal and hence I might be having ‘Transient MDS’. He said it meant that I need just be monitored for some time : initially by the haematologists and then by my GP. We took it to mean that it was a misdiagnosis as my cytogenetics were normal, the blast cells under 2% and I did not have anaemia any more.

I had two days of delirious happiness then 2 days of guilt. Just 5 days ago, I had informed my relatives and I wished that I could have waited. The only puzzling fact that remains is extreme exhaustion. I don’t step outside as I get exhausted when I shower and change but the haematologist said with 11.7 Hb I should not be feeling tired. I was 52 when I was given the diagnosis, have always been very healthy and had a lot of stamina. I feel old and tired.

Can anyone tell what is happening please?

Any answer would be appreciated.

Many thanks

Josi

[Author]

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