newly diagnosed

[Geraldine]

Hello everyone
Sorry if I am not following correct protocol but am new to the site. We are from Liverpool UK. My beloved has been diagnosed with MDS RAEB-t – he has just finished first chemo round and has been told today he will definitely need a bone marrow transplant. He is 50 and otherwise in v good health. Does anyone have any advice on this – or what we can expect? Thank you in advance for any help you can give.

[simplistic007]

Geraldine,
Sorry to hear about your beloved. I was recently diagnosed with MDS in April, 2010. I have MDS and possible Allogeneic transplantation. I just had a rebiopsy bone marrow and on Monday, 8/23rd I find out if I need to go through transplantation or not. The appt. was originally for 8/26th, but they called and changed it to 8/23rd so I am not what to expect when I go in for the follow up visit. I wish I had more details on MDS, but I am new just like your beloved to MDS. All I know is I am now scared and waiting till Monday is a long time for me even though I am glad they changed the appointment 4 days sooner. Good Luck to you and your beloved, and please keep up posted.

Thank you,

Simplistic007
Age: 43 years old

[daveb]

Hi Geraldine,
I am sorry to hear of your partner’s diagnosis and hope that he gets all the treatment available and appropriate for him also that it is successful.
I too am from the UK (Midlands) and was diagnosed with MDS-RAEB 2 in June of this year. This followed an operation in January, subsequent anaemia and diagnosis following a Bone Marrow Biopsy in June.I was put on a watch and wait system and have to see my Haematologist again on Monday 23/8/2010.I wait to see what developments have taken place.
I am a fairly fit 65 year old man with few health problems in the past, the exhaustion due to the anaemia being my only problem symptom currently. In actual fact I have rarely felt better except for the tiredness after exertion.
At the time of diagnosis I was given very little information and it was only after reading every thing on the Internet about MDS that I found out it’s significance and managed to worry myself silly. I have now come to terms with the situation and hope for the best but who knows?
I wait to see what’s next in store on following Monday’s appointment.
All the best
Daveb

[daveb]

Hi Simplistic,
I trust all goes well with your appointment on Monday. The lack of information seems to be the norm no matter where in the world one is. As I have written to Geraldine I have adopted a wait and see attitude, as reading all the information on the Web means that one just becomes more and more worried.
I am certainly not looking forward to all that seems to be in store for me in the future but having an understanding partner is of great help,I feel extremely sorry for anyone out there with no one close to help them.
Good Luck
Daveb

[ramey2148]

Simplistic,
My first bit of advice to you would be to keep a file of all of your appointments and bloodwork. There are some VERY knowledgable people on this site that can help you as long as you have your blood counts. Ask questions and you will get answers.
Now, I am 32 and my transplant date is on the 31st. I will be admitted to the Hospital on Tuesday to start chemo for the 2nd time. They tell me it’s just like getting a bag of blood. Very noninvasive. The hardest part will be the recovery. Dealing with the GVHD, cleaning EVERYTHING all of the time. My Doctor says it’s at least a year of recovery.

[Mary4Mike]

First, don’t believe every statistic you read on the internet. Every person and case is different and many of the stats are old. In the past few years, 3 main drugs have been used to treat (not cure) MDS. Many of the stats are from before these drugs were out there.

Keep all of your test results. You will want to track your counts.

The "cleaning everything" after transplant is common sense things. Buy several hand sanitizers and have them sitting around and use them! Even put one in your car. It all just becomes second nature. You will have to wear a mask until your counts come up, but that is really no big thing. You won’t be going anywhere for awhile except to the doctor. Also, you will lose your hair. My husband has chosen to stay bald and I love it!

Thank God that you only have to handle this one day at a time. If you look at it this way, it helps alot.

All the best to you all.

[simplistic007]

Ramey, thank you for your information and support. I truly appreciate it. My thoughts and prayers are with you. I wish you nothing but the best recovery. God will be there with you so I am sure everything will turn out a long recovery but a good one.

God be with you,
Simplistic

[simplistic007]

Daveb, thank you for your support. God be with you.

Simplistic007

[Geraldine]

Hello DaveB and Simplistic. I am so sorry I didnt reply to you both when it was so kind of you to take the trouble to write. I really hope you are doing ok? Beloved is now back in for second round of chemo on a trial called aml 17 He needs a transplant, his brother isn’t a match though. It’s been a rollercoaster 12 weeks – agree with you that a lot of the data on the web is very old and the prognosis stats are pretty much meaningless. We’re staying positive and the staff at the Royal Liverpool are being fantastic. Thank you again for replying.Thinking of you both. Geraldine

[Lori Patrick 14]

I would welcome any information any of you can provide. I begin my chemo next Thursday for 7 days straight and then, if I survive the chemo, an allogneic bone marrow (Stem Cell) transplant. Someone mentioned going to the transplant forum. Anyone know how I find it?

Hugs to all. Lori

[Zoe]

I think they mean over on Marrow Forums http://forums.marrowforums.org/
If you scroll down the forum page you will see a category labled "Transplants" There are people there who are going through all stages of the transplant process. Keep us posted and God bless.

Zoe

[Geraldine]

Hi everyone – we got a surprise today -just finished second round of chemo( 5 days aml 17 clinical trial) – was expecting a third and lots of complications eg infections as per last time. Anyway we were told we may not need third set of chemo and unless he’s getting infection he is coming out wednesday! never thought possible Then its bone marrow transplant wait. But anyway we are delighted didn’t expect a fortnight reprieve though will need to prepare for BMT.So message there not to assume chemo always going to be so bad. Sickness and feeling rubbish yes but without infection means massive difference. Sorry cant share more scientific advice but wanted to let you know worth being optimistic and positive. We were dreading this phase and its been ok.

[Lori Patrick 14]

Thank you for the encouraging news! I’m ready for them to "hook me up" already!!! smiles Positive attitude at the moment. My husband read Psalms 23 to me last night and it is helpful as well.

I’ll be in touch often! Lori

[Lori Patrick 14]

Thanks Zoe — I think I found it!

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