[Luke and Margaret]

Fran my love, you are going to give that pacemeker of yours a real challenge! It is important to breathe. luv. Just breathe and quiet yourself.

You are not responsible for finding the blood test results. They will figure that one out, I promise you. If they have to repeat them, so what? From your earlier post you knew that was going to be necessary anyway!

As for why you are waiting to start Vidaza, I imagine it is for the same reason that Luke and I are waiting. Vidaza affects the immune system. It lowers the blood levels. Your doc will want to make sure that your husband is in the best possible position to withstand treatment. She doesn’t want to have to deal with any infections or complications that could have been avoided by taking the time now to build up his blood levels as high as possible.

It is terrific that your husband does not seem to be overly ill. While the real test of how sick he is is in what the blood levels say, it sounds like he is capable of enjoying his life to the fullest extent possible.

Your doc seems to have given you a good list of blood builders to work with. On another post on this forum I also wrote some of the things our naturopath was recommending to help Luke get ready for chemo. Some of it is a lot of fun, and we are both benefitting from them.

Please take good care of yourself, and do the very best you can to put the worries away, be at peace, and live each moment to the fullest. It sounds like everything that should be done is being done, so your well being is the best gift you can give to your husband at this time.

I know that is easier said than done, I struggle with it every day myself.

Good luck, hun. (((Fran))))
Margaret

[Luke and Margaret]

Oh boy; Caroline, your example of things faling between the cracks is what I am terrified of here in Ontario! Our American friends may not have to worry about his stuff in quite the same way. While in their system the costs are largely borne by the user (which brings its own terrible frustraitons), in our system costs are supported by taxes.

Here in Ontario, the health care system was pretty much gutted by the last government in an effort to cost contain. The current government cannot afford a “fix” so has opted for bandaids and putting pressure on hospitals to manage differently. The result is a total dog’s breakfast. Those waits in emerg are absolutely GRINDING. We waited 48 hours of a bed last time, 24 hours this time. Even 11 hours is too long. We drag our feet in the worst way when something spirals out of control, and try to avoid it. We’ve had four admissions since August, all but one through emergency. ARGH!

Caroline, this may sound like a control freak’s solution, but I put together a patient summary for Luke. It lists diagnosis and date, all the docs, all meds and supplements, the results of bone marrow and blood tests since August, and a daily weight, temp, and BP chart along with notes. It is getting long now, but I don’t trust information to get transmitted without having direct input. Even with it, often docs don’t read the critical data, and I have to walk each new one through the issues step by step.

It is completely horrifying how much we have to become experts in our own disease to survive the system we now have.

In your dad’s situation, is there a solution that your oncologist is proposing?
M

[Luke and Margaret]

Caroline
What a horror story. I am so very sorry. Here’s hoping the “team” starts acting like a team soon.

Alexa
Just when you think you’re bottoming out, someone comes and tells you a story that reminds you to be grateful for what you have. Holy geez. Romania is not a place to be sick, is it? I’m glad you found us; there is a phenomenal amount of helpful information on this web site.
Margaret

[Luke and Margaret]

Patti et al
I had a conversation with our local oncologist today very similar to the one you suggested. I Told him that in the matter of vidaza I needed the two of them to talk to one another and communicate a single message. That I did not appreciate being sent on a wild goose chase; it is no small matter to raise 60K, and we turned the world upside down to do it.

Unfortunately I choked up when I did it; why is it that at times when you wish you could breathe fire you end up as a rain cloud?

Nontheless, we seem to have communicated some essential information about the lack of current match for a stem cell, the pressure to access vidaza before any transformation takes place, the degree to which the entire network to aquire it is already set up, and a much better sense of why the doc would like to hold off a little longer.

I agreed with him; if we still have a little time to work with, it would make a lot of sense to actively rid Luke’s body of any pre-existing sources of infection. If Vidaza makes the blood levels drop, then we have some work to do to strengthen him as much as possible before we give it a shot. There appears to be agreement on considering vidaza as an option, and on how closely to monitor his blast levels.

Every hospitalization takes such a lot out of Luke. Today his platements are low, and his hemoglobin is at “time to tranfuse” level. His appetite is not up to par yet, but he’ll have to force himself as we have a lot of ground to catch up.

The problem, as I suspected, was a cold. From now on any person entering this house with a virus of any description will need to follow infectious diseases protocol, if they need to enter at all.

You’re right. This is hellishly difficult. Complications like conflicts with health care providers are totally and avoidably draining. I keep wondering – do docs really expect you to leave it all in their hands and not worry our pretty lil heads about such lofty matters? If so, they need to have a look at the medical system around them. To survive it, patients practically need a body guard to ensure the right things happen at the right time. Any God complex I may have had about health care providers went out the window many, many weeks ago. *sigh*
M

[Luke and Margaret]

Hi Dusty
Your post explains something I’ve been seeing – Luke’s hands sometimes go very white. I’ve never connected it to the shakes. His hemoglobin is hovering at 98 or 99. Not the lowest he’s been, but certainly low enough for him to start looking symptomatic. I’ll need to ask his oncologist about this. Movement helps; the more he lies in bed the more these issues come up.
M

[Luke and Margaret]

You guys are amazing. I’ve printed this off, will take the information back to the hospital tomorrow. At the very least it will comfort Luke.

Just one confusion …. what is a “wicking” pj, and how do I find them?
M

[Luke and Margaret]

Hi Jim
Is there another way to access Lola’s page? I can’t seem to get in from your link.

We have our own page…. not terribly inspirational, right now, but my attempt to keep our family, spread far and wide, involved.
http://lukeandmargaret.blogspot.com/
Margaret

[Luke and Margaret]

Hi
We just returned from the naturopathic clinic. The critical supplements right now are magnesium (2x 250 mg., one just before bed), a whey powder to add proteins and calories, a diet focussing on soups with vegetables, chicken and turkey. The meat can be pureed if the appetite isn’t up to taking it any other way. No red meats of any sort. Rreduction in sugars; hHoney is the recommended sweetener.

Recommmended foods include 2-3 cloves of raw garlic daily, tomato, cooked cabbage, and mung bean sprouts.

A regime of hot and cold showers are prescribed to get the circulation going to to support lymphatic drain – start warm 3 minutes, then cold 1 minute, repeating the cycle three times and ending with cold. Also to stimulate circulation and digestive functioning, we’re to rub castor oil on the abdomen before bed time.

I hope this is helpful. I’ll tell you more as it unfolds.
Margaret

[Luke and Margaret]

A little update….. yesterday we learned that Luke’s brother is not a stem cell match. There is a double cousin in California they are trying next, but truthfully, I’m not all that hopeful. Dr. Lipton wants an exact match, otherwise the risk is too great.

Meanwhile, Luke has lost three pounds this week, and is having night sweats again. We’ll ask for a bpne marrow on Monday. If we’re still under 20%, its time for a trip to Buffalo. Ted the pharmacist has aour Vidaza supply ready, and Dr. Lipton can prescribe, so we have to do this.

Paying for it is a complete fiasco. I finally heard from the government today. The process is so lengthy and so frought with Catch 22’s that it is useless to us. We have one more number to call, but I don’t expect too much from the source either. We’re on our own, at least for the moment.

Our psychologist at PMH suggested we contact our local television station, and set up some sort of pledge system with a bank. I’m all for trying it, we have nothing to loose. But time is of the essence, so if we have any margain in the blasts we will get Vidaza first, fundraise later.

Meanwhile, we are selling a car, Luke’s brother is selling a motorcycle, and we’re passing the hat around the family. Dear God I hope we are one of the responders to Vidaza, cause we are going out on one heck of a limb to get it.
M

[Luke and Margaret]

Hi Theresa
I presume they’ve done a brain scan?

Transfusions don’t cause epilepsy, as far as I know, but there may be a new, unrelated cause.

I’m so sorry this is happening. You must be scared stiff. But as someone else here said, thigs can turn around on a dime. Please stay strong.
Margaret

[Luke and Margaret]

Hi
My oncologist at PMH was involved in the clinical trials for decitibine. His feeling was that the drug was incredibly promising. However, he believes that approval and release are going to be slow to come. There were problems with the rigour of the Phase III trials that need to be sorted out, and there is some kind of major shift happening in the corporation that might affect the resources to sort out problems. It is coming, and it is promising, but it may take many months yet before we can access it unless you manage to get into a trial.

The Vidaza information you received in the brochure is covered in the clinical trials information on the Pharmion Vidaza website. It’s in the professionals section.
http://www.vidaza.com/corporateweb/vidazaus/homeB.nsf/Content/Home

You’re right, the number of CMML patients was very low in the Phase III trials. However, on these boards we’ve seen at least as many CMML patients as were in the trial, report positive results; we’ve had several reports of remission.

I don’t know if there is a plan to gather field data, but there should be. It’s looking heartening from what I can gather here.
Margaret

Margaret

[Luke and Margaret]

Hi Caroline
We are going to the Canadian College of Naturopathic Medicine. We’re an intern’s homework! The college is mentioned in Weil’s book as one of the best training grounds in North America; it helps with our confidence level.

Through her supervisor (who will be coordindating the research and treatment) the treating team accesses all of the expertise available through the teaching staff and the naturopathic research base. From what we were told, they had planned to spend the week in between appointments doing the research and consultations needed to develop Luke’s program. I was impressed with their team approach.

We were surprised by the reasonableness of the fees, and it turns out that our private insurance carrier will cover them. I guess that is more “good news”

I do love the idea of a good news day. I absolutely scour this web site looking for people’s stories about what is working; they give us a boost, and there have been days when we’ve really needed a source of hope.

Esme, we may yet find ourselves sharing coffees while our hubbies are in the stem cell transplant, lube and oil bay. PMH has Timmy’s. That makes it a five star facility in my books!
Margaret

[Luke and Margaret]

Hi all;
Thanks so much for your replies. Neil, I found your posts. I had read them before so knew that low platelets were related to bleeding, but had no idea what high platelets do.

Luke developed a deep vein thromobosis right around the time of his CMML diagnosis; he is currently on warfarin, and his INR levels have been a bit lower than they usually are.

I’ve been adding a bit more leafy greens to his diet, and vitamin K affects warfarin. He has also been taking fish oil for the heart, so that may also affect clotting. I’ll need to look that up.

If platelets are associated with clotting, and warfarin reduces clotting, and his numbers are climbing, it would all make sense. This is starting to sound like an algebra exam question… If Mary walks seven miles…. ARRRGH!
Margaret

[Luke and Margaret]

Patti
Here is the web site I used to develop our “juicing menu” for hemoglobin.
Margaret

http://www.wholehealthmd.com/hk/remedies/disp/1,1459,428,00.html

[Luke and Margaret]

We’ve been juicing a whole pineapple per day, along with other hemoglobin supporting fruits and vegetables. My husband’s hemoglobin was 68 at its lowest, and he was transfusion dependent. Since starting juicing his hemoglobin has stabilized and he no loinger needs transfusions.

A week ago he was hosptialized for a kidney issue associated with his heart meds (a long story)and his hemoglobin started to drop. Since I’ve had him home, he’s climbing up again.

Today we told our hemotologist what we were doing; he seemed to be a little surprised, not overly skeptical. It’s hard to argie with results.

We haven’t tried sesame other than tahini, which we use in hummus and baba ganouj; I have no idea if that is helpful.

We have started seeing a naturopath form the Canadian College of Naturopathic Medicine; I’ll let you know if anything interesting comes up.
Margaret

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