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?
There is a very good article in the supplement to the Mail on Sunday today, and if you don't take the Scottish equivalent, please go out and get one. It is about a Doctor who has MDS, who has gained considerably by taking Azactidine, at Kings College Hospital London, and is preparing for a Bone Marrow Transplant.
Others may remember that I wrote a week or so ago, that this drug has not been approved for use in the NHS as it costs 45,000 per patient per year, but it does seem to be the best hope. Regrettably, I have not won the Lottery this week-end, so cannot pay for it.
I am very tired, and feel very low. My determination is normally strong, but having been told that I need a blood transfusion, I seem to have gone into a state of weakness, and feel self pity. If alcohol was not contra to the drugs I am taking, I could go out and get very happy.......But I cannot so must regenerate my determination. I must, I must, I must.
Love to all
Chris.
new bone marrow drug alternative to chemotherapy is saving my life. So why has it been rejected by NICE?By Professor Rodney Taylor
Last updated at 10:00 PM on 27th March 2010
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It was the day that I could no longer climb the stairs to bed that proved the turning point in my battle against the rare bone marrow disorder myelodysplastic syndrome (MDS).
Having been diagnosed with the disease four years ago, my cell count plummeted last July - despite having undergone a number of blood and platelet transfusions.
I was anaemic and weak, my appetite was poor and I had such bad pain in my bones that I could not get out of the bath or raise my foot sufficiently to climb the stairs.
Then my consultant, Professor Ghulam Mufti, a world authority on the disease, at King's College Hospital in South-East London, gave me a lifeline. He prescribed the disease-specific drug azacitidine. It had an amazing, transforming effect.
'I'm lucky: Thanks to azacitidine, Professor Rodney Taylor is now healthy enough to undergo the transplant that may cure him'
My haemoglobin level, the measure of how bad my anaemia is, has risen gradually from a lifethreatening five over the past eight months to 16 today, which is normal.
But I am one of the fortunate ones. This month the National Institute for Health and Clinical Excellence (NICE), which recommends the provision of licensed drugs for use by the NHS, rejected azacitidine.
Recently it has also rejected nine other drugs that could have benefited more than 16,000 cancer patients in the UK - on the grounds that they are too expensive.
While NICE recognised that azacitidine was clinically effective and extended end-of-life treatment, according to their specific criteria, they decided not to approve it for people with MDS, chronic myelomonocytic leukaemia or acute myeloid leukaemia as it costs 45,000 a year per person.
That is nothing compared with the total costs of radiotherapy, chemotherapy, surgery and post-op care which can mount up to more than 100,000.
As a physician - I am currently a visiting Professor of Bioethics at St Mary's University College and a tutor in medical ethics and law at Imperial College School of Medicine - I believe that decision is wrong.
As the deputy chairman of the MDS UK Patient Support group and a member of Patients Involved in NICE, I am appealing to them to reverse that ruling on behalf of the 700 patients a year who need the drug.
MDS is a debilitating disease, affecting one in 25,000 people in Britain. It can lead to complications such as recurrent or life-threatening infections or bleeding if platelet levels drop.
Most patients rely on frequent blood transfusions to manage anaemia and extreme fatigue, as well as platelet transfusions.
While the average survival of patients with MDS is about 20 months, 30 per cent progress to acute myeloid leukaemia, a very aggressive and resistant form of leukaemia , with an average survival period of only a few months.
Azacitidine, which is manufactured by Celgene under the trade name Vidaza, is the only licensed drug available to specifically treat MDS and has proved not only to slow the progress of the disease but to improve patients' quality of life by freeing them from repeated blood transfusions. It certainly has improved mine.
I was first diagnosed with MDS in 2006 aged 64 when I was working as a consultant gastro-enterologist at Ealing Hospital.
I had been on holiday in Libya with my wife Janet, an obstetrician and gynaecologist, eating a Mediterranean/North African diet with no alcohol, and thought it was a great opportunity to measure my cholesterol.
However, after I had a blood test, my haematologist said: 'This is not right.' The neutrophils, those white blood cells that are needed to fight infection, were seriously reduced.
At the time I was pretty well in myself. I had no symptoms so, although I was concerned, I thought: 'This can't be that bad.' I knew acute myeloid leukaemia was a risk but I was fairly optimistic.
I told my children - Alice, 29, a vet, Romilly, 27, an economist, and Beatrice, 24, a teacher - and carried on as normal, having blood tests at three to six-monthly intervals to monitor my blood picture.
The following year I retired from clinical practice but it was not until the autumn of 2008 that I noted an insidious change.
I was due to be going to Singapore and Australia with Janet for a working holiday but I felt tired, lacked energy and didn't feel up to it, so I cancelled.
I returned to King's, where tests revealed that my red and white blood cell lines and my platelets had dropped.
I was anaemic so I was given two drugs - granulocyte colony-stimulating factor (GCSF), which stimulates the bone marrow to produce white blood cells, and erythropoietin, which stimulates the bone marrow to produce red blood cells.
These came in pre-loaded syringes, and I injected myself, one twice weekly and the other weekly.
They did not have the desired effect so I had to have eight blood transfusions over the next six months, and two lots of platelets to lower my risk of bleeding.
I would spend the day at the West Middlesex University Hospital, near my home at Hampton Hill in South-West London, having three 300ml units of blood run into my body through a cannula into a vein in my arm. Each unit took about two hours, so these were boring days.
The following day I would feel almost normal again although still more tired - I was inclined to doze off during the afternoon, which was not like me. Then, three weeks later, I would go through the whole cycle again.
After I deteriorated, King's put me into a research programme on azacitidine. The unpleasant alternative, which other patients will have to endure unless NICE reverses its decision, is chemotherapy - or just best supportive care.
Although I have to travel to King's for a week a month for the oneminutejab - I began with 14 injections-over seven days and am now down to five injections in five days - it has transformed my life.
I am now well enough to have a bone marrow transplant, the only potential cure for MDS - 40 per cent of those who have transplants live beyond two years. I have three potential donors and am hoping to have the operation this summer.
I could remain on azacitidine longer but then I would be that much older and my condition could worsen again despite drug treatment. A successful transplant depends on a lot of things, not just the match but the state of your heart, lungs, kidney and liver. If you are well, you optimise your chances.
Generally those who remain on azacitidine are not eligible for transplantation. Anecdotally, I know of somebody who has taken it for seven years and is still in good health.
Even so, I am understandably quite apprehensive. I will have to have chemotherapy to suppress my bone marrow and immuno-suppression drugs so that I don't reject the transplant.
I anticipate being in hospital for six weeks, during which time visiting will be very limited, as I will be at high risk of acquiring infections.
But if all goes well, I will have a new lease of life and the prospect of a cure. That would not have been possible without azacitidine.
Read more: http://www.mailonsunday.co.uk/health/article-1261234/A-new-bone-marrow-drug-alternative-chemotherapy-saving-life-So-rejected-NICE.html#comments#ixzz0jTfUDhzg
Hope you find this interesting
Christopher.
Lou wants me to ask about chest pains. Is that a symptom of MDS that others suffer with? He can hardly do anything without enduring some level of chest pain. It's not his heart as nitro doesn't improve the pain in any way. Your comments will help to lessen his anxiety. We appreciate any words of wisdom.
Congrats on #400. I wanted it but didn't think we'd jump to 400 so quickly. I'm very happy to have more active participants posting here.
We went out and checked other groups on this site and I see that Chris has been recruiting particpants. Good for you Chris. We all belong together here...as we're stronger as a cohesive group.
Thanks for listening...Just three days of work for me and then we're off to Spokane to visit with Lou's daughter. We haven't really told her about MDS and thought it would be better in person. She'll see he's just fine albeit he's quite pale...but aren't we all, it is winter time!
Have a great week everyone...I'll be posting again soon...we see Lou's vampire on Tuesday morning.
Gayle & Lou
Good luck with telling the family. n my case it has brought us all a great deal closer, which is finding good in bad.
Been to London again today, 6.00 am start, 7.00 pm home again. No wonder I get tired.
Other than that, nothing to say.
Chris
Thanks for posting the article. I was out all day yesterday at a ceremony to commemorate the 50th anniversary of a fire where 14 firemen and 19 salvagemen were killed in the line of duty (the cheapside st fire) so did not see the papers.
Very interesting though and has promoted several thoughts...How difficult it must be (I hope) to make decisions on cost that can shorten or end peoples lives. How incredibly expensive some medicines are (must be plutonium filled). If these medicines are so very expensive in order to recoup the research costs then why does the unit price not come down as more people are given the treatment? Finally why am I trying to apply logic to this!
Chris we are all pulling for you and I hope you fight fight fight to get your stubborn, difficult, mischevious but positive attitude back. This disease seeks out the slightest gap or weakness and tries to defeat us. Do not give it an inch!!
I hope that you will begin to feel more energetic soon and more like yourself again. In the meantime I hope you know that our thoughts are with you.
Ally
Ally
Feeling a lot better today after a good night's sleep, a rare event, but was so tired yesterday that I had to stop on my way back from London, at a service station just 19 miles from home to have a quick nap, and it did the trick.
Yes determination is easily set aside, when a touch of depression sets in as a result of bad blood counts, but over all, I am determined, and will not allow minor set backs to dissuade me from living on a lot longer.
Am considering a trip to Dubai to see one of my daughters, probably in April, for 10 to 14 days. A bit of warm weather will not do me any harm, and will mark the end of a very hard and difficult winter.
Tomorrow Weds is my appointment at Kings College Hospital London, (once about every 2 months) where I get a very valuable second opinion from the country's experts. Regrettably this also involves a 6.00 am start, as getting through the traffic on on the A23 going north towards London, can be very difficult at commuter traffic times.
Best to all
Chris.
Our Christopher is having his moments, too, but his fighting spirit keeps popping up. Yes, go to Dubai, see your daughter. Winter is almost over for us (although we may get snow tomorrow night), and spring will rejuvenate our spirits. Sunshine gives us Vitamin D, and my oncologist put me on extra D, which apparently helps our immune system.
Thanks for posting the article, Chris. Very interesting about this drug--which I don't expect to ever get.
Gayle, I can't help but think that Lou's chest pains must have to do with the heart, regardless of whether nitro works or not. Today is Vampire Day, right? Is Lou seeing his heart Dr any time soon? Another possibility is meds. If he's on statins, as H is, lots of strange things can happen. Remember, the blood isn't carrying as much oxygen as it should, so perhaps exercise is telling Lou that he doesn't have enough for the job at hand.
Ally, I don't know how you do all these things, even if you are considerably younger. Maybe you and Rachael will be among those who get that new drug one of these days. After reading the article Chris posted, I understand better why doctors are so reluctant to do bone marrow transplants, and why us older MDSers are ineligible.
Now that our health bill has passed, no one knows what the future will bring for the near term regarding our current meds. As I've mentioned, Aranesp is an expensive drug.
Been to Kings College Hopspital for my 2 monthly second opinion. I asked tyhe Consultant how long would my Hydroxicarbamide go on doing any good, and he told me probaly for another month uoi tro perhaps another year, and it is difficult to say cos all patients are different.
He took my breath away by offering me one of three trials on new medicines, and confirmed that Azacidine would be good for me. I have sheets of paper to read, and plenty of time to think things over and talk to the family, and have no idea how I will decide, or even when. To confirm that I am eligible, they would have to do another Bone Marrow Biopsy, but will only do so if and when I have accepted.
Pleanty to think about.
Feeling OK today. Consultant recommends a scan of my difficult stomach which is giving me grief.
Regards to all
Chris
We've had rain and snow today and hope the weather clears for our trip to Spokane tomorrow morning for a visit with Lou's daughter. Yippee - I have Thurs-Fri off work.
Rachael...having had food poisoning twice in 6-weeks...I feel your pain. It's hard to describe how awful the feeling is that consumes you during an attack.
We had an appt. yesterday to see Lou's Oncologist. His blood test results showed he's down a bit...but not bad:
White Count = 2.2
Red Count = 2.63
Hemoglobin = 9.8
Neutrophils = 1.3
MCV = 110.3 (highest level ever)
Lou felt pretty good yesterday...having received a double dose of medication because we're not in town on Friday. Today he's still doing well but his anxiety is mounting over leaving our dog with someone for the first time and over traveling...we're not expecting any sunshine.
I intend to have fun and I'm sure going to work hard to make sure Lou enjoys the trip too.
We'll report in from the road...I'm taking my laptop with us.
Be well everyone. Chris - congrats again on securing #400. I like #414 too! :)
Lou & Gayle
What were NICE thinking when decided not approve Azacitidine for the NHS scheme? How do you measure what a life is worth and or which disease deserves treatment over another. How many lives will now be lost to a seemingly poor decision? None of the treatments for MDS are on the Australian PBS. Thank goodness the Australian government does pay for blood transfusions and BMTs. I just got told by the new specialist that EPO will cost me $45,000 per year. My previous specialist informed that Revlimid will cost at least $100,000 ($6000 per 5mg) a year. What are in these drugs that would make it cost so much? The research answer is not an acceptable response for me anymore. I wonder if anyone in the medical world is brave enough to tell my ten year old son that his mother isnt worth saving. Why is Revlimid approved (in Australia) for Myeloma patients, but not for MDS patients even when there is unequivocal evidence that patients with del 5Q can achieve remission from the drug. Thats my rant for the day... I have more to declare, but its probably worth holding back.
Thanks for all your support. Im sure my family will survive and get through this tough patch. The food poisoning adventure how does one avoid it? I love food, so it seems Ill be taking the risk every time I eat out.
Chris Im so glad to hear that there offering you various trials to participate in. I was a bit worried to hear that you were feeling down. Its hard to explain to family and friends that MDS has an insidious affect. Its like one day youll feel really well and its almost like your back to normal, but the next day you wonder what you did to feel so poorly. On top of that theres no real physical change, accept you may look pale and sleep a lot. I cant imagine what is been like for you with the disease transformation and the many drugs you have to take just to feel well.
Today Im feeling well, albeit just a bit tired. Im looking forward to this weekend. I just love the Easter break.
I wish you all a very special Easter wish ......for good health and for governments to make the right decisions that protect and save precious human lives.
Happy Easter to you all.
Rachael
Chris what great news re the trial and even better that you seem to be feeling more upbeat. I always say it is easier for us MDS sufferers than family and friends etc as we know how we feel each day and in many ways are less worried at times than they are. The hard thing however is the fact that we must remain positive for the sake of those around us (rather than add to their worries) and this does add an additional burden. The last thing I want to do is make you feel like we are all depending on you to be upbeat all the time but we do worry about you.
In summary please tell us when you are felling low and then we will gently nudge, encourage, support and nag you back to your normal self.
Ally
Dear All,
A happy Easter to you all, may it be a time free from pain, hurt, illness and worry, and may we all rise up, and above our illnesses, and bring joy to our friends and family.
I have a bit of work for you all.
Please go to Google and Put in, Panobinostat.
That is the name of the drug trial that I may have an opportunity to join. This is a drug, that offers a possible cure for MDS and for Refractory Acute Myelogenous Leukaemia (AML) which is apparently what I now have, which is just an extension of MDS.
For AML patients they are looking for 164 people in 50 countires. If I want to take part, I must (a) Say Yes, and sign the consent form and (b) have a Bone Marrow Biopsy. The treatment is by capsule taken orally.
Will last for ever, or until it is shown to be no good to me, or until they choose to stop me taking it, or I choose to stop.
I will have to attend hospital for Blood tests, and /or ECG's 6 times in the first cycle of 28 days, 5 times in each of the next 5 cycles of 28 days, and twice per cycle thereafter, until completed or stopped.
There is a great deal of interesting information on Google. Would all of you, spare me a few minutes, look it up, and tell me what you think.
Eventually, I will make up my mind as to what I want to do, but for now I want to canvas the maximum of opinions amongst my family and friends, to help me to make the right decision.
Please help me!
Happy Easter
Chris.
So, first weigh the downside. Do you have anything to lose if you partake? Will participation in the trial throw your whole life into a turmoil? Will you feel worse? Then the upside. What might you gain--a cure? or at least buy some more time? Perhaps you'll feel better at a minimum? It's your doctor(s) who'll have to give you more solid information. [Don't tell anyone, but I'd jump at the chance for a cure.]
Rachael is already finding out that drug cost is a big factor. I don't know any answers to that. Drug companies are notorious for charging Americans an arm & a leg for the same products they sell cheaply in Canada & Mexico, which is why our seniors head for the borders on their medicine-shopping trips (or online).
I mentioned once before that our new U.S. national health plan is bound to impact the way things are, & not necessarily for the good. There had been a lot of rumors about "letting the elderly sit on ice floes" type of thinking before it passed, & apparently no one knows what the passed bill actually says. It's certainly a possibility that drugs like Aranesp, which don't prolong life but make it better, might fall thru the financial cracks.
Gayle, Lou's counts are very similar to mine, as usual. Glad he's hanging in there. Good thing you aren't expecting sunny weather in Spokane, because it probably won't be. Our latest storm wasn't so bad after all; the snow didn't reach us, altho we got sleet. The hills around us lost their snow before the day was over. I'm ready to go back to spring, myself. Oh, & tell Lou that your dog is going to appreciate him all the more when you return. How can your low-rider pooch miss you if you won't go away???
Ally, very well put regarding our crazy Brit!
I guess Susan is still on the road down south.
I have been reading everything I can find and my advice would be to go for it. There seem to be a lot of restrictions so if you are eligible then I would strike while the iron is hot. It is always a worry when studies are at a stage at which the side effects have not fully been identified but other than (bizarrely) not being able to eat certain oranges and not being pregnant (your not are you!?) then it looks like they will monitor you so well that they should be able to deal with stuff early on.
I suppose ultimately it depends on your personal circumstances and how the travelling to and from the hospital fits in.
All the best with your considerations.
Ally