Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had a very interesting and long, consultation at Brighton County Hospital this afternoon, and I am waiting to hear from them as to dates, and a programme. For the moment I do not want to anticipate anything, because I need to read, mark, learn and seriously consider the advice I have been given, and also see Professor Mufti (the Uk's No 1, in Meloid diseases) at Kings College Hospital London, and my regular Haemo at Worthing. These meets will take place on Wednesday and Thursday. After that I will have to meake a firm and binding commitment to one course or another.
I propose to write to you all, in time for my 75th birthday on Sunday May 30th, with what will be I suppose a form of personal testament.
Please be patient, I will be honest and clean with you all, but I must think, mark ,learn and inwardly digest that which I have heard so far, and that which I will be told this week.
Thanks to you all for your good wishes, and prayers, and thoughts, all of which are very very much appreciated.
Above all I want you to know that my determination remains unrestricted, firm and resolute. If determination can get me through, and I believe it can, I will win, one way or another.
Pray for me.
Love
Chris.
As I have ben told by my Dr.s and this wonderful informative site, there are many different forms of Myelodysplasia. I was diagnosed this April with 5q-myelodysplasia.
I am a Non small cell lung cancer survivor, stage 1b. My cancer was found during a yearly physical exam with standard xray in August of 2008. A lower left lobectomy was performed in Oct of 2008. After 3 different consultations with lung cancer oncologists, all 3 doctors as well as my surgeon suggested chemo for 3 months. I began Jan. of 2009, and ended May of 2009, and in November of 2009, at my regular check-up at Sloan, they saw something was wrong with my red cell count. It kept falling. and after many many different kinds of blood tests to follow, a bone marrow biopsy confirmed this.
What is so unbelievable to me is, I was told by my Doc's, this was a side effect from the chemo, although rare, it does happen as it happened to me! Thank God it was found and now being treated. I do not believe this drug is a form of chemo. I had heard from all my Doc's that the meds were very good. I can only pray they continue to do the job!
Please ask your medical team if this can be good for you. I pray you will find good results regardless what your Dr's choose. Please let me know if you need further info as I have the phone number for the drug company, and used it a couple of times for myself. They are all so informative and kind !
Sincerely,Adriane
All is well in the southern hemisphere. I felt good for a couple of days after the transfusion, but today I'm exhausted again. I'm not sure how long I was meant too feel good for.
Chris
My prayers are with you.
SusanB4 / Adriane
Your question about Revlimid was good. So I googled it. The websites I checked stated that Revlimid is a chemo drug. I've posted a website below if you want further information. It is basically lenalomide.
http://www.chemocare.com/bio/revlimid.asp
Ally
It was good to hear that your having such a lovely holiday.
Best wishes to you all
Rachael
First Chris you know your in our prayers for healing and all you need to make the decisions you face. I know how you feel about having the resolve to fight it through. I've told my docs and my God that I'm not ready to leave here just yet -- I put everything in God's hands and let the docs know He's in charge. While I've said I'm going to fight for every minute I can get, some of the options that may come available have isolation for a coule of months with very limited chance of survival and/or cure. My Mom had the same junk and they told her she had 2-3 months to live with the same choices. She chose to spend it with us rather in all that treatment and isolation and 2 1/2 years later passed away. Heck of a thing for any of us to face these kinds of things but with the support of the great folks in this group, our famil\ies and our God it will all end up just right.
Update for me on the lab work this morning for the pre admission for tomorrows transfusion my WBC were up to 2.2 from 1.2 a few weeks ago. RBC 2.47, HGB 9.1 and platletes 94. All up a good amount especially from the last two tests. I told them to have the transfusion being a mix of Lance Armstrong and several typs of NFL football players so I had all the right stuff to go see the grand babies this weekend.
Have a great one all
Mike
I think my options are limited, because of the particular type of MDS and now AML that I have.
Tomorrow the second blood test this week, and Professor Mufti at Kings College Hospital London.
Thursday third blood test of the week, and consultation with my normal Haemo at Worthing, followed by a Bone Marrow Aspiration at Brighton, where Dr Chevvassut wants to start my treatment on June 7th.
Yippee this should be contributiloon 650, must close incase Gayle gets there first.
Chris
Haven't we done well!!!
Love Chris.
Dearest Dears and Darlings,
A fair few developments this week. Having been badly let down by Dr Ho, over the Panobinstat drug trial, I wrote to Professor Mufti at Kings College London, and I have an appointment to see him tomorrow, Wednesday.
Meanwhile my Haemotologist at Worthing wrote to the Haemo boss at the County Hospital in Brighton, who rang me on Saturday, and asked me to see him last night which I did. He has arranged for a Bone Marrow Aspiration on Thursday at 12.00 non, in Brighton, and he wants me to join a Drugs trial for two new drugs that are being compared . Kings College Hospital in London also has the same trial running. We feel Brighton is probably more convenient, but will see.!
A involves a 7 day stay in Hospital, in each of the first 3, 28 day cycles, and a number of visits in between.
B involves 2 injections per day, at 12 hour intervals, for 10 days in each of the first 3, 28 day cycles, and a number of visits in between.
The concern is that Hydroxycarbamide, the oral drug I have taken for 9 months +, may stop working any time, and I would be left out in the cold, with nothing available.
There are signs, the need for frequent antibiotics to cure colds, coughs, sore throats, chest and phlem, frequent septic spots on face and chest, cuts and bruises developing for no known reason etc etc, and some concern is being expressed.
I may therefore have to change my mind and subject myself to Chemotherapy, in one of two ways, A or B above. Which, will be chosen by computer and will take into account all my counts and oddities, including age.
We have organised a small lunch for 13 + 2 babies in Worthing at 1.00pm on Sunday. I am reading the Epistle and the Gospel at 8.00 am Holy Communion on Sunday, and I hope Judith will accompany.
I am dithering like HELL! What should I do for the best? By Thursday night I must make up my mind. The decision is mine, and it is a hard one to make. Please think of me!!!!!
Love to you all
Daddy/Christopher/the awkward old cuss!
Chris is faced with a hard decision. I'm certain he'll make the right choice and his determination will get him through. If we all pray for a wonderful outcome...for Chris and all "posters" here...I'm sure the best outcome will prevail.
Chris, you are the captain of this ship....keep us running straight and true.
Gayle & Lou
I like my last post, # 6-5-4...it has a good ring to it!
Gayle
I'm feeling a little overwhelmed. Hoping that I can do this and do it well and/or ok, by myself. My BMT that is. I just want to cry, I feel so isolated. Hopefully I can gather myself and stand up talk for the first time in my life... and do this, for me! Don't know if I'm making sense. But I am so glad I have you to talk to. It means a lot to know that someone maybe cares.
Thinking of you Captain Chris...
xx Jules
Cap'n Chris, it's quite possible that either of these trials would work well for you, & the decision you have to make may be moot. At least you have choices; some folks don't. I'm betting that whichever you go with, it's the right thing to do.
Jules, I worry just as much about you. Must you remain so isolated in your life? Having a BMT is definitely a time when you need lots of support. Our leaky boat crew is here for you, without question, but you need family & friends, too.
So, Jules, you must be your own best friend. Perhaps this period of your life is meant to teach you to love yourself & be content with the unique person you are. Then you will be able to reach out and care for others, the most satisfying job in the world (if Chris can do it, so can you!).
Supercalifragelisticexpialidotious, the world is wonderful, hurray for common sense, I am on Cloud 9, and oh so happy, oh so relaxed with the most wonderful news.
I saw Professor Mufti at Kings College Hospital London, this afternoon, and he started by apologising for the cock up over the Panobinostat trial. Then he asked me to talk direct with Dr Ho, which I did and he made a full and fulsome apology.
Professor Mufti then told me that as I am perfectly well at present, and enjoying a full life, he considers that it would be a grave mistake to go onto any trial, or do anything other than to continue to take my Oral Hydroxycarbamide, which has seen me through, and kept me fairly well controlled for 9 months plus.
He also told me that if the Hydroxy-what not, fails to keep me controlled he will move heaven and earth to find me something that will do me some good, and he mentioned, but I will not repeat, a particular idea that he has, that he has done for others.
I have therefore cancelled the Bone Marrow Aspiration for tomorrow, and started to organise a holiday in Colombia in Bogota, leaving some time after June 16th, exact dates not too certain as yet.
Professor Mufti wants to see me again, if possible before I go to Colombia, and most certainly when I get back.
All my spots on chest, neck and face are caused by infected hair follicles, and I am going onto antibiotics for a week.
As you can imagine Judith and I are over the moon. Bless you all, and thanks to so many of you for your messages.
Love
Daddy, Christopher the Captain etc etc etc.
You've got some great folks taking care of you there my friend. It's always worth multiple opinions and reviews with what we all have.
Glad to hear you back up in your life. Enjoy every minute of it.
Your friend,
Mike
Lou and I are so happy for you. Lou's thinking we should go there to visit one of your doctors...but then he remembers that he'd have to take a plane to get there. It's not going to happen any time soon...but again, we're so happy for your good news.
Lou has had a mild form of diabetes for years...and just recently it seems to have gotten worse. He's been drinking tons of water and due to that...hasn't gotten a good night's sleep in several days. Doctor is running a blood test in the morning to see what's next. Wish us luck.
Congrats again Chris - we all need to remember to enjoy life...one day at a time!
Gayle & Lou