[Luke and Margaret]

Hi Esme
Boy, you guys have sure had your ups and downs. This crazy disease is enough to make the strongest person an absolute mass of quivering protoplasm.

I was amazingly heartened by your mention of XIAP. Dr. Lipton mentioned a clinical trial going on, but at the time we were there didn’t have a lot of information about it. I’ll have to search the info on the drug and make a call on Monday.

We’re still on W&W. Luke had another hospital admission last week, this time for a kidney problem, probably caused by the heart drugs he is on. He was in intense pain, which will not have done the heart any good at all. We go back to the heart clinic on Wednesday, will have tests of heart function, and find out just how much damage was done.

Its been a month since the last bone marrow test, and judging by the symptoms the CMML is active again. A week in hospital meant that I lost control of his nutrition and couldn’t juice for him, so the precarious balance was lost. He’s home now and getting stronger every day – even mowed the lawn yesterday – so I know that the pineapple is doing its work again now.

Friday we went to the naturopath college and had our first consultation. Interestingly, the Toronto College is mentioned in Andrew Weil’s book as one of the best places around for naturoptahic medicine. I guess we’ll be seeing for ourselves why. We go back next Friday, and they will have his regimine worked out by then. It can’t do any harm, and from everything I have learned may well do some good. If our own adventures in pineapple are anything to go by, then I have hope that we can keep the progression of the disease slow enough for Luke to enjoy a reasonable quality of life for many months to come.

I took a leave of absence from work. Its a bit of a shock dealing with the role loss, and the income drop, but we will find our way. We’re using the time, on Luke’s good days, to act as if we are retired. Now…. what do retired people *do*, exactly?

The sun is out today, and the leaves are brilliant. The Ontario contingent has a fine day ahead, let’s all use it to the utmost to live life!
Margaret

[Luke and Margaret]

My heart goes out to you both. God speed in your decision making.
Margaret

[Luke and Margaret]

Hi all;
I got alarmed when I read the sugar caution too. However, the role of pineapple in stabilizing blood levels seems to be so important that there must be a balance here. The rest of the day can easily be sugar free, but we gotta keep that pineapple in the juicer, I think.
Margaret

[Luke and Margaret]

Hi

Our medical appointments didn’t generate particulalry good news.

Apparently Vidaza is going to be extremely difficult for us to get at. There is some dispute between the corporation and our government on pricing, so the manufacturer is not releasing to Canada on compassionate grounds. Conversely, our medicare will not pay for us to access the treatment in the US. I’ve started an advocacy campaign with our provincial government, but goodness knows how that will turn out.

Further, there was no improvement in heart functioning at all. We are now on low sodium, fluid restriction, continued diuretics and beta blockers. Luke’s BP has been low for weeks, but apparently needs to go lower if he can get there, to rest the heart. He is so thin, and so lacking in strength that it is hard to believe some days that he is the same man. His spirits continue to be good, thank goodness.

So on we go to learn how to manage yet another ailment. ARRGH!

Meanwhile, I had my annual physical and my own BP is way too high. I’m suffering from all sorts of stress related ailments. It’s getting increasingly dicey, as my employer wants me back at work. I wonder how much stress a human being can sustain before they spontaneously combust!

Thankfully Luke’s blood levels are continuiing to hold, and Luke isn’t in need of transfusions. That continues to be a bright spot in the never ending saga.
Margaret

[Luke and Margaret]

[QUOTE]Originally posted by diner:
[QB] I’d like to try the juicing thing but am afraid to because the inside of my mouth is always getting canker sores from much fruit.

I don’t know why this works, but it really does… salmon oil capsules seem to resolve cankers and mouth sores within a couple of days.
M

[Luke and Margaret]

Juicing is Working!

Its been three weeks since a transfusion and Luke’s blood levels are continuing to improve. Yesterday his HGB was 122, his WBC 4.5, RBC 3.78, and Platelets 281. This is the best everything has been since the time of diagnosis. Most markers are in or slightly below the normal range.

We’ve been juicing a pineapple every day; other ingredients come from a list of hemoglobin supporting fruits and veggies. Mixes might include mango, orange, celery, carrots, strawberries, etc etc. We pick something from each of the critical vitmain and mineral groups.

Right now the leukemia is holding its own. The heart problem, on the other hand, has not improved with two weeks of medication. We are now getting really rigourous about it, with the aim being to keep his BP VERY low, careful balance between low enough to rest the heart but not so low as to cause symptoms. That is much, much easier said than done, but we will see what we can achieve with nutritional therapy, fish oil and Vitamin E, and CoQ10.

Today I learned my own BP is 150/100. I have nerver had high BP before. I think the stress is really doing a number. At least we can do the heart thing together. This is a full time job!!!!
Margaret

[Luke and Margaret]

Hi Caroline
Thanks for searching. I’ve been in direct ouch with the writer and she didn’t have an answer to the access question either.

For you Cannucks out there, apparently the makers of Vidaza and the Government of Ontario are in a dispute over proce.

Vidaza, as many of you have heard, is an “old” drug originally developed for AML, and not overly successful in that role. A couple of years ago the did the trial on MDS/ MPS and discovered Vidaza has excellent benefit for this group.

The trouble is that Ontario wants to pay the rate the drug was costing 10+ years ago. Pharmion, the manufaxturer, has decided not to apply for approval in Canada, not to market it here, and not to release it under the named patient compassionate release program. Ontario in turn refuses to foot the bill if patients go stateside for treatment. Check and mate.

Unfortunately for us, it is the only option for my husband right now. I have written to our Minster of Health and will start follow up phone calls tomorrow. This needs to be fixed. Meanwhile I am looking for a source of funding for American treatment, or someone who has found a way to get the drug imported into Canada that we can use as precedence in our own case.

On another but related topic, some of you had suggested to wait for Decitabine as an option with better results for CMML. Apparently that drug is about two years away from availability. It apprently performed very impressively during Ph III clinical trials, but the trials are now over. There is some kind of problem with data massage and management which is slowing things down.
Margaret

[Luke and Margaret]

Big surprise yesterday – almost two weeks after a blood transfusion, Luke’s hemoglobin was still 117. We’ve been juicing hemoglobin supporting fruits and veggies twice daily, and using essiac tea three times daily. Who knows what it is that’s doing it, but we do appreciate a period of time with relative well being.

Back to PMH next Tuesday to discuss options, including Vidaza. Next Wednesday we get heart testing to see if the heart has begun to repair itself.

There is significantly less coughing and expectorating re: the pleural and cardial effusion that is secondary to a particularly nasty virus, so there is some hope that things might look a little better in the scans and pictures.

The search for a SCT donor has begun. If th universal energy is with us, he may be ready and a donor found at the same time.!!! ????

[Luke and Margaret]

Yahoo groups would work very well, I am already in another one. Usually a moderator sets one up and issues invitations to join…. fo we have a moderator?

Husband, Luke (58), CMML (August 18, 2005). W&W

[Luke and Margaret]

Now that we have members of a CMML list – what happens next?
M

[Luke and Margaret]

Hi there
I feel like I’ve come out of the desert into an oasis! My husband was diagnosed with CMML in Toronto on August 18. Ever since I have been trying to a) find out what this is, and b) how it is treated. Like most of you I have found a maze of dead ends, and still have not figured out whether this is leukemia, MPS, or a “snowflake”. Some sites call it CMMoL; that term led me here, after a long wander.

Since diagnosis Luke has developed DVT, pleural and cardial effusions, and from out of nowhere a left ventrical function reduction, the latter which seems to have ruled out any form of chemo or perhaps a SCT. Our oncologist had never heard of Vidaza, which will tell you somehting about our current state of alarm.

We’re headed to Princess Margaret (Toronto) hospital for a further consultation re: SCT. Does anyone know if there is a CMML specialist at that hospital??

Thanks for being here!
Margaret

PLEASE, let’s develop that mailing list, and put me on it as an “urgent screaming situation”. Luke blasts increased from 8% to 12% in 4 weeks, so I have the feeling that this is going to be a very, very difficult ride.

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