Ally,
Are you on chemo or anything to treat the MDS? It sounds like you have a wonderful doctor who consults with the experts to help guide him on your treatment plan. I guess I wonder what determines the difference between MDS and leukemia. I have MDS/CMML (leukemia). My monocytes are high which I think distinguishes me with the leukemia. I know they all deal with the blood marrow and wondered if you have been tested for that, not that I am an expert by any means. I am on Vidaza and have noticed a big difference since being on this chemo. I would have been transfusion dependent by now if not for the Vidaza. I will fly to Houston, Tx (MD Anderson) next Wed. for my appt. on Thurs. and fly home the same day. I always dread what I might hear but so far the doctors have been somewhat encouraging. It just really stinks that we all have this uncommon disease which is so rare.
Susan

Hi Susan

No I am not on chemo or any other medicines at present. I appear to have been placed firmly in the watch and wait category. I was told that by now I would likely be on antibiotics all the time as my neutrophil count has at times been very low but it seems I am more resistant than they first thought and have avoided most infections.

My Dr has a very good reputation and has been great although we had our 'teething problems' to begin with when I thought he was rather uncaring in suggesting I should give up work and just accept my life had changed. Once we established that this was not something I would consider and that I needed his support to make sure I could get through this then he has been amazing. Now he just rolls his eyes when he hears how much I have been doing rather than lecturing me. The only issue that frustrates me sometimes is that often when I attend for my blood checks etc I meet with one of his junior Drs and at times I have found them to give contradictory advice etc. My Dr says "it has taken nearly 2 years for 8 specialist haematologists to understand your condition so you can hardly expect and Dr from the haematology ward to understand it in an hour" which is a fair point.

In my experience it may be difficult to stand up to the experts but you MUST ensure they understand things from your perspective.

Ally

Ally,
Could you ask the Jr. Doc to accompany your regular Doc during your appt.? I know with my GP physician, he has several physicians assistants who work in his office, but when I call, I just ask to make an appt. with him. I am told that it can take some time (he is on television a lot promoting his miracle surgeries) but I just tell them he is the only one I will see. I pay the same for an office visit if I see the PA's or the doctor, so I want to get the best.

Dammmit, I wrote paragraphs in reply to yours Dear Sunrise, and have lost the lot, all of which goes to prove that I am either senile, geriatric, or plain stupid, and probably all three.

I suspect your Ma is in a lower category. The three blood counts I concentrate on are Hemoglobin, WBC and platelets. My Hg is about 10, my platelets 22, and my white cells sometimes rise through the roof. We are all different, no two the same, and we all worry, though we should not for MDS will not kill us, its the infections that happen and cannot be cured or internal bleeding or our partners who call in the Vet and ask for us to be put down, (fortuneately our VET is my best friend) and he doesn't fancy my wife.

We all contribute to NEW MEMBER on the list of discussions. Join us there, read as much as you can tho with 346 contributions that is a tall order, and write in regularly. Some are lovely, some are sexy, all have MDS, and all are full of optimism, which is the best medecine. Watch and Wait, is a very normal Medical reaction. I was on W and W for 12 months, before I got any treatment.

The best treatment of all is to carry on with normal life, do not worry and do not get upset. So keep your Mother Chipper....!

Write in regularly
Chrisjb

Chris,
It is so good to see you back. I don't know why we worry about you like we do....it has to be the flattery.....:). How was your trip? How are you feeling? I hope everyone is feeling as good as I am right now. I don't want to get too excited because I'm afraid of jinxing myself and having too much hope that the chemo is working. I was the only one of three who did not go into remission with the chemo but wonder if maybe i'm not into remission now. I go to MD Anderson (texas) a week from Wed. and will know then. I'll have my blood tested here (Illinois) tomorrow, but I know it's not low by the way i'm feeling. I pray for you all every day.

The boy is around, and fighting. After 4 days in Scotland, I am pleased to say I never ate porridge, but cross that I could not have any kippers for breakfast. The snow was pretty but did not inconvenience us, as the roads were OK, but there were some road closures in places we did not have to visit. Amazingly from Inverness to Elgin (Ally will understand this) the fields to the South were full of snow, and those to the North had hardly a trace. Thats Moray!

But now back to the South, and had two days travelling up and down to London, and a third day planned for Weds, after a hospital appointmnet. So I am tired tonight, and will be even more so tomorrow.
Congratulations Susan, Gayle will be fuming that you got spot 350, she loves to do so, to rub my nose in it.

Ally I am very pleased you have insisted on carrying on working. It is probably the most effective medication available.

Thursday 4th is Vampire day, and after my appointment, I am to visit the Audio Department to have a hearing aid fitted, so now I really will be able to claim I am geriatric! I lost all hearing in my right ear last year, when I had a bad infection which went to my ear, and a mastoid operation followed in Dubai.
Will as a dutiful follower of this column report how matters go. Judith wants to be able to stop shouting at me, and I want to stop shouting at her "I cannot bloody hear you"!

Love to all.
christopher.

Kippers! The only time I can rec all seeing anyone eat those things for breakfast was on my wedding cruise, when my father-in-law had them. You crazy Brits!

I was so pleased to see long posts from our young friend Ally, as well as from Susan. Ally, you're right--I did mean older & wiser, or some such nonsense. I'm glad that you posted your numbers. More of us should do that. And Gayle will accept graciously that she did not get #351. But watch out, everyone, for the stampede for 400!

I got back from my trip to Sacramento yesterday afternoon, & decided to wait until today to post, as I had another blood draw scheduled. I'm going every 3 weeks now, & it's working! Hemoglobin 10.6 (up from 9.7 last time). The other figures are basically in line with this improvement. Chris, eosinophils are dropping, so whatever was wrong may be correcting itself. I don't see the oncol until mid-April.

I felt good before the vampire visit (acronym VV!), but I've done that before, only to be tossed into the dumps by low numbers. So I'm very grateful to have both good numbers & good feelings. And hey, I was in & out in a half hour today, a record time!

I have a question for everyone. A friend of mine started me thinking about this because she had lung cancer. She underwent Cyberknife treatments 3 months ago, & learned yesterday that her cancer is gone. So now she thinks I should do the same (be cured, that is). Have you heard of anyone with MDS who has been cured? That's aside from people with BM transplants, of course.

Now, Chris, back to you. H is pretty darned HOH (he has had two or three mastoidectomies), & wears expensive hearing aids when he's out of the house. (No point wasting batteries on the ol' lady.)

I've learned to keep my mouth shut until I feel fairly secure that he'll be able to hear me with 3 or less repetitions. Sometimes it gets hilarious when he tries to repeat what he hears, e.g., "let's leave at noon" becomes "less leaves with moon." Or much worse! Like Judith, I get quite cranky, & tend to raise my voice. Whereupon he says, "Are you in a mood?"

Of course, my own hearing has been deteriorating, & I had two hearing tests in November. I made up my mind this weekend to take the final step, but which one? I'm busily researching which way to go. Being somewhat of a gadget & geek fraud, I'm strongly considering those that you can program yourself. Every trip to have a regular HA adjusted is a 70-mile round trip for us. If I order one of these, I'll have 2 months to see how I do with programming it.

Hi
I must of spent two hours last night reading your wonderful thread. The experience I have had emotionally was eloquently penned by all your contributors into an illustrative journey that I could relate too. I was diagnosed with the most favourable form of MDS (del 5q), unfortunately the years I thought I had without needing treatment have been reduced. My red blood and white cells are affected. Thank goodness the platelets are healthy! My private specialist has sent me to a government cancer centre for management, in hope that the hospital specialist will be able to plead my case with the government to have Revlimid approved for my MDS. In Australia Revlimid is not approved for MDS, but has been for Myeloma. My blood results to date are (Ill put the Aust. normal ranges in brackets);
Hb = 90 g/L (Normal Range: 115 165), RBC = 2.56 (3.80 5.50), WCC = 2.5 (4.0 -11.0), Neutrophils =0.9 (2.0 8.0)
When I was first diagnosed I was borderline and therefore managed quite easily, now everything has changed. Its the rate (over one year) at which the blood quality decreased that concerns me, especially when every article on MDS says I have the most favourable type of MDS. Anyway , enough feeling sorry for myself, nothing worse than being self indulgent.
Again thanks for a wonderful thread; I wish you all the best.
Aussie Rachael

Dear Sharon,
I remember years ago, watching some Americans in an Hotel in London, eating Kippers for Breakfast with toeast and Orange Marmalade. That really is crazy. They are delicious. But you as a former colonial subject, (or born to) have no right to criticize us, living and being a citizen of a country that invented Grits. There really is no comparison. Tomorrow Vampire day, will report, and if I can get the full list will post it.!




My Dear Dear Dear Aussie Rachel,
Where have you sprung from! Now I can fall out of love with all the old timers, and concentrate on you. Where do you live. Tell us about your life. Do you speak Strine?
As for blood counts, they go up and down, and if you've read past contributions, you will know that I have twice been given a relatively short time to live, and I am still going, still being difficult, still bloody impossible, and still thoroughly enjoying life. The secret lies in ones determination.!!!

Short of time tonight, but a better contribution tomorrow.

Love to all
Chris.

Rachael, a warm welcome to you. Now we have two Aussie gals! I am so sorry that you've been diagnosed with this disease at such a young age. Us old farts (I'm 70, & Christopher is older than dirt) know that our time here is limited anyway, so the object is to live life to the fullest of which we are physically capable.

Yes, your subgroup is the best, they say. When I got my diagnosis, that was the one I hoped for. But I settled for the second best (we try harder).

Are you married? Kids? Working? Do you have a bucket list? You are allowed to feel sorry for yourself from time to time. This is a support group, after all. We all have our blue times, then we pick ourselves up & get on with it.

So Christopher is going to throw us older gals over for you young Aussies. Sigh.

And Chris, I had nothing to do with grits. I don't eat 'em either. If the South had successfully seceded, you wouldn't be able to blame me.

Hi Folks
My name is Mike and I am a 51 yr old Myelodysplasia patient. My 1993 DX is MDS RARS-sideroblastic anemia. I am what you call a "slow burn".
Because I have had this disease for so long it should come as a comfort for those who believed like me that this disease is a 5 yr .death sentence. I have a favorable (if you can call it that) form of this syndrome.

I have tried a few chemo agents such as Amifostine and a de-ironing agent -desferal/exjade plus have been taking Aranesp for 4 yrs up to last month when my $ 65.00 per Mo. co-pay jumped to a one time cost for the drug at $4,700 and then $ 500 per month thereafter. This is not a terrible thing because I was getting to the point where it just was not working as well as it should. Even at the upper dosage limit. Welcome to the new MVP Medicare coverage gap nightmare.

Needless to say I am looking for study trials and magic bullets to keep me stable and relatively healthy. My hematocrit at last check was 28. RBC at 2.43. Plateletts have been fairly steady at around 130-150k and the Whites are good. I go in on this monday to have my port-o-cath flushed and a consult with the Doc. I hope he has something for me. I have read some of the posts and wish everyone a speedy recovery.

Mike, we're very glad to have you. Were you really diagnosed in 1993? Slow burn indeed!

I've been wondering about how long I might be able to use Aranesp, & to hear that you've been on it for 4 years was enlightening. I won't be too surprised, tho, if Medicare stops paying for it, especially since I'm on the max dose every 3 weeks. I know it's quite expensive. If they do, que sera, sera.

Who is the photo of?

What is your hemoglobin count? That's the number my Drs have gone by the most.

We could really use your "expertise" as a long-timer, so I hope you will stick around. We have some pretty Aussie ladies with us now! (If you're married, I won't tell.)

Good Evening...this is Gayle, my husband has MDS and after reading the latest posts...I truly believe we have the makings of a fabulous SOAP OPERA here.

I love the new blood (no pun intended here) - welcome Rachael & Mike. Rachael, watch out for Chris - he loves the ladies...and I mean loves! from Procrit to the Aransep formula.

You guys are scaring me...Lou's co-pay max is just $2,500 this year. If Medicare stops paying for his treatments, the cost of his current treatment plan is about $1,600 per week. We could blow through our savings like wildfire.

Thanks for listening (reading) and I'll post about our doctor visit on Friday evening.

Gayle & Lou

Hi
Do I speak Strine ? Not quite....... I am Australian born, but grew up in New Zealand. When I was in my early twenties I travelled Asia, Europe and North Africa and lived in the UK where I met my husband David who happens to be South African. For about five years I lived in a country called Swaziland (next to South Africa and Mozambique). After my son was born we moved to Australia and have been here since 2001. So with all that my accent is somewhat distorted and people find it hard to pick where I originate from, though I must admit the kiwi accent is pretty hard to shake. Its the pronunciation of the vowels that are difficult to correct. I watched my wedding video the other day and had to laugh as I didnt realise that living in Africa had affected my accent in such a short period. I had this very broad South African twang going on.
I have been married for twelve years to a wonderful man and have a ten year old son named Jaime who brightens up my life every day..... he keeps me feeling young, but is also starting to make feel uncool, with the games he plays and the language he uses. At present my son does not know that I have MDS. Dave & I will tell him when the time is right. I just feel that your childhood goes so quickly. Why burden him and take away the enjoyment of being truly young and free of any worries. I recently stopped my job as a Quality and Safety Manager for an aged care organisation. By October 2009 I found that working full time, being a mother and a wife was too difficult to balance. The final straw was when my morning coffee (from a really good coffee shop!) would not keep me from being tired. I hope to get part time work when I can get this tiredness under control. In the meantime I have written my first childrens story book; presently my sister is editing it for me. I still have the illustrations to complete (I trained originally as a graphic designer).
I am on a couple of forums, but for the first time I felt safe enough to post my photo. I did this because your thread is not only about having MDS, but about you as individuals. I love the humour you all display. Its quite entertaining and endearing.
Thanks again for your very kind responses and Ill keep in touch. Please note I love my numbers too; I'm gunning for the number 400.
Best Wishes to you all.
Rachael

Dear All, and a great big welcome to all the new 'uns, who never wanted to be a member of this club, just like all of us.

Sharon thinks I am as old as dirt. Well not quite, though May 30th will mark 75 years on this earth, and they have been 75 very interesting years, living in 10 countries, visiting 52, 3 wives 8 children and a huge EGO.!

This morning was Vampire morning, followed by a pleasant session having a hearing aid fitted and tuned. Sharon, you'll be jealous, cos it cost me nothing, and to get the new batteries, I have to return the old ones and I get free replacements from my Doctor's Surgery. Obama does have a point! As those of you who are complaining about the cost and who will pay, must agree.

Today the resulkts were OK, and did not result in adjusting the doses of Chemo that I take orally. Hemoglobin 9.43 (OK) Platelets 38.1 (wow thy've gone up) and White Blood Cells 20.9 ( a bit high)

The total read out is

WBC 20.9 10e9/L
NEU 14.3 68.4%
LYM 3.37 16.2%
Mono 2.45 11.7%
EOS .029 .140%
BASO .738 3.54%

RBC 3.62
HGB 9.43
HCT .310
MCV 85.6
MCH 26.1
MCHC 30.5
RDW 17.3

PLT 38.1
MPV 7.96

aNYWAY WHAT THIS ALL MEANS i HAVE NO IDEA WHATSOEVER. I have MDS, it has moved over to Acute Myloid Leukaemia, and I feel OK. So I have given up worrying for Lent.!

Sharon, What the hell were you doing on a Wedding Cruise with your Father in Law present. Couldn't H. manage without his Daddy?

A great Big British Welcome from the Old Country to Mike, wow, if you can keep going so can we, let us all emulate you. Determination is the key.
"Nil illegitimae carborundum" loosely translates from the Latin, into "Don't let the bastards get you down"

The National Health Service in the UK, has just turned down the offer of a new drug. I quote from today's Daily Telegraph.""


Cancer drug that extends life is too costly for National Health Service.

Terminal cancer patients will be denied a drug thT CAN EXTEND THEIR LIVES AFTER A DECISION WHICH HAS CAUSED OUTRAGE AMONG CAMPAIGNERS.

People with rare cancers of the blood and bone marrow, including two forms of Leukaemia, will not be given a new drug on the NHS even though it has been proven to extend patients lives by nine months.
The National Inst for Health and Clinical excellence (NICE) said that at 45,000 per patient it is too expensive.
Campaigners claim people are being penalised for having the wrong type of cancer and the system is failing those with rare conditions.
In final draft guidance, NICE has recommended that "AZACITIDINE" should not be used to treat a range of blood and bone marrow conditions, including MDS, chronic myelomonocytic leukaemia, and acuite Myeloid Leukaemia (Thats what I now Have)
It is thought 700 people a year would have been eligible for treatment. The average life expectancy for patients diagnosed with MDS is less than 2 years, but one third develop an aggresive form of Leukaemia and their life expectancy drops to just a few months.
David Hall, chairman of the MDS UK patient Support Group, and an MDS patient said, this is a huge blow to MDS pastients, particularly those with the high risk forms of these diseases for whom the outlook is often bleak. Only 700 pateints a year in England and Wales would require treatmentwith Azacitidine so we do not believe providing this life extending treatment would make a huge impact on the NHS budget.
Mike Hobday head of campaigns at Macmillan Cancer Supprt said "Azacitidine" is jusy one of many drugs for rarer cancers to be rejected by NICE in the past year. The present system is failing people with rarer cancers.
Dr Carole Longson, health technology evaluation centre Director at NICE, said the organisation was idsappointed not to be able to recommend the drug, The Appraisal Committee concluded that relative to the benefits, the price the NHS is being asked to payfor Azacitidine is still too high for it to be recommended as a cost effective use of NHS resources, " she said.
The maker of the drug, Celgene UK, will appeal aginst NICE's decision.

Christopher's question " What is the value of one life?"

Is this available in the USA?

Love to all
Christopher.