Losing Weight is Good?

Skinny me, a long time ago

Today I learned that I have lost twenty four pounds since I started on Chemo.

Of course, the good thing is that I lost weight.

The not so good thing is what caused me to lose weight.

Not  being able to take my stomach medicine because it interferes with the absorbtion of  Dasatinib ( Sprycel ) by sixty percent made it necessary to go cold turkey with my tummy meds. I'm sure I have mentioned this before. Yes?

So the results were instantaneous. Tummy problems full force. It's taken these many months to get to the point where it's not so terrible to live with, though I often question quality of life. Do I want to be sick the rest of my life by not treating tummy problems? Or do I want to be sick with the long term results of untreated leukemia

I haven't even mentioned the meds I cant use anymore for pain. Have I? We wont go there right now. Tummy is the biggest problem.

Needless to say, it has gotten down to experimenting with various foods to learn what my tummy can handle and what is no longer my friend. Right now I can eat apple, banana, asparagus, oatmeal, white meat turkey and occasionally, a little bit of red meat. I'm sorry my vegetarian friends. I cannot eat soy products either. My favorite food, a good salad is a touch and go situation. One day I can have a little, another day it will sit in my tummy heavy and nauseating.

This really bothers me. Losing twenty four pounds without an adequately balanced diet is concerning. I've got to look at the contraindications on the Dasatinib labeling sheet again. I hadn't given it much thought in the beginning, but there are several nutritional supplements that are not to be taken.

Well.... Who knows? At the rate I am going, perhaps I will look like the skinny wench in the picture again!

Primary Response and GI

This was the response I received from my Primary Care Doc:

"You need to work closely with GI regarding these issues.

We can also send you to the nutritionist to help sort out the diet. Push fiber to help the questran go through - metamucil or citrucil.

If this isn't doing the trick, schedule an appointment in the office to see how we can help resolve some of these symptoms.

Sorry you're having such a hard time."

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So, then I sent email to my GI Doc: 

Dear Dr ...

If I am going to remain on the chemo and continue to have uncontrolled GERD, I would like to have more effective treatment options that what I have right now.

Simple methods of controlling food intake is not possible. I can barely eat anything without having reaction. I've been coughing for weeks. Had a cold or flu since the week before Christmas. Or was it all simply gastrointestinal? Diarrhea, vomiting, coughing. Not well controlled by typical medications for same, except imodium. After new years things seemed a bit better. However the coughing continued. I have a history of asthma. I know what to do for it. It's not asthma. I have allergies. It's not allergies. Maybe a combination. But definitely as soon as I eat something I am coughing. Up until last week, a dry hacking incessant coughing throughout the day. Speaking brought it on. Bending over brought it on. Finally I realized it must be the GERD. I stopped eating except for the barest minimum I could tolerate. Things have improved. But I doubt this is healthy.

In the meantime, I have lipids that have gone sky high, and now needing to take Questran, which doesn't sit on my stomach well, either. 

Quality of life means something to me. I have spent years dealing with so many health problems I found that having some control made life easier. If I have to stay on chemo pill for the rest of my life and not have well controlled other health issues it is not worth it.

I am at the point where I cannot find sufficient answers on my own. 

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This was his response:

I just got your email.

Please schedule an office visit with me and bring in the copies of all your prior gastroenterologic procedures with pathology. 

I can then help you to manage these issues.

Take Care

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This was my response:

I have appointment now scheduled with you on March 5.

Are you wanting my endoscopy report that showed nothing from 2010 and 2011 from UCSF? 

A history of my visits to Gastro at UCSF for 2010 and 2011?

From 1997 or whenever it was at UCSF for the basket procedure and cutting of the something of Vater?

Or are you wanting my gastro history from the 1980's where they did the busting of the gallstones with the machine and the ensuing pancreatitis?

Records from Dr. C.... are not available for the years when I had the chronic pancreatis. At least as far as I know. 

Tummy Turmoil

Letter to My Primary Care Physician

I don't even know how to eat a healthy diet anymore. It was a struggle before being on chemo, as I have the oral lichen planus which only permitted bland foods and little chewing. I've had that almost permanently for seven years.

I was also on a fairly bland diet because of GERD. But, now since I cannot take H2 blockers or proton pump inhibitors, controlling the GERD is not happening, even though I've got the misoprostol which helps a bit, and that other one I can only take on an empty stomach. (Sucralfate?). The only time of day I have an empty stomach is when I first wake up. After I eat something, my stomach is never empty for the rest of the day. My food just sits there, burping and nauseating throughout the day. I dread eating anything most of the time. And now of course, we realize all that coughing has been caused by the GERD (Though it started with that cold or flu I had before christmas).

So, as each day goes by, I test whether or not I have appetite. If I don't and I eat, I just feel worse. So, I might nibble on whatever feels safe to eat. Sometimes I can eat soup, cereal or even part of a frozen dinner. I hate it that lettuce makes me sick now. I miss my salads!

If I have to stay on this chemo the rest of my life and just tolerate the inadequate control of my tummy problems (also have hiatal hernia), I know I cannot maintain a "healthy diet" that will change my cholesterol issues. I find this whole thing extremely frustrating and discouraging. Even the Questran sits in my stomach like a rock and queasiness is my companion. I've had to carefully balance my health for years. This is out of control. I'm at a loss for what I can do.

Doesn't seem worth it to be on the chemo!

Chemo Vs. Statins... Chemo Wins

This is what happens when you stop taking statins for the sake of taking chemo.

Lipid Profile Results

Component	Your Value	Standard Range	Units	Flag
Fasting Status
Total cholesterol	274	98 - 212	mg/dL	H
Triglyceride	308	<200 -	mg/dL	H
HDL cholesterol	44	>40 -	mg/dL
LDL Calculated	168	<130 -	mg/dL	H
Cholesterol to HDL Ratio	6.2	1.00 - 4.50		H
VLDL (Calculated)	62	5 - 40	mg/dL	H
Interpretation	Current research indicates there is significant association of arteriosclerotic coronary artery disease when: Total Cholesterol >240 mg/dL LDL Cholesterol >160 mg/dL HDL Cholesterol <35 mg/dL Total Cholesterol/HDL Ratio >5.0

I am running out of veins to have my blood drawn from. With all my past medical history, the ones in my inner elbow have scar tissue in them, so it has gotten to the point where blood draws have to be done from the top of my hand.

Unfortunately one time when I was in the hospital for a kidney infection an IV was being inserted and the vein got "blown" and that hand has been useless for blood draws ever since. So, now I only have the left hand available for blood draws. Two veins were still usable.

But, with all these weekly blood draws, they are flattening out. So, now the blood has to be drawn from the middle of my forearm.

I used to be very unaffected by blood draws and IV's. But as the years have gone by, more problems have occurred and they have taken their toll. So now, I go for a blood draw making sure my hands and arms are warm to keep the veins puffy, they say. I do a relaxation exercise and try to live through the new found pain. Why did they never hurt in the past? Why do they hurt now? I don't get it.

To get to my point...

There is a specialized blood test the doctor ordered called a BCR, and that's what has now been ordered!

I Can Do Anything Better Than You Can!

I'm happy I came across this:

"Dasatinib, administered once daily, as compared with imatinib, administered once daily, induced significantly higher and faster rates of complete cytogenetic response and major molecular response.

Since achieving complete cytogenetic response within 12 months has been associated with better long-term, progression-free survival, dasatinib may improve the long-term outcomes among patients with newly diagnosed chronic-phase CML. (ClinicalTrials.gov number, NCT00481247)"

Why am I happy?

Dasatinib is the chemo drug I am taking for my leukemia. When they mention "complete cytogenetic response and major molecular response" it means that the way out of line bone marrow and blood is getting back to normal. It doesn't mean a cure, but it means it is controlled better. That's the easiest way to explain it at the moment.

The other one mentioned above, Imatinib is an older chemo drug that is sort of the great grandpa of the one I am taking. It used to be the best one around. But according to the above, it looks like my chemo drug is so much better!

Dasatinib is also known as Sprycel.

Imatinib is also known as Gleevec

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Note: The art is my own altered photo. It is called Chemo Fire