Diagnosed Nov 2017 cml ph

Hi Harriet, I was diagnosed in 2016. My doc missed all the signs on my blood tests for who knows how long? I had been having what I thought was a recurring sinus infection as I had a constant headache in my left temple. Went through 5 antibiotics with no relief and finally took myself to the ER for a scan of my head. Of course they take blood no matter what in the ER. I was told, not very tactfully that I in fact did not have any sinus problems but leukemia.  Don't even know how I got home!  B/C of some childhood PTSD regarding illness, I had a total meltdown, and went into a deep depression as I was certain my life was over.  After switching oncologists, from one in my community who was an idiot, I went to Sloan in NYC. My oncologist there is wonderful, but I still had terrible fear of dying,  I went to a good therapist who helped alot, I am on meds for depression and anxiety which help alot.

You will not die from this you will die with it. And you will live a normal life span.  But, it is never far from my mind that I have CML. I don't think about it every minute of every day anymore, but it is always in the back of my mind.

Exercise is good. So are some of the supplements others speak of on this list.

I urge you to find a support group, or a good therapist.  If there are no support groups in your area find one online. Stay on these boards. I believe if Im not mistaken that there may be a section on this group for family members. Maybe your daughter can find other kids of parents with CML. 

Most of all, hang in there. I know it is difficult and scary, but if we had to get "something" this is the one to have!

Feel free to contact me again. 

Good morning Harriet or should I say good evening? what is the time difference between us? I am in New York State? First I have to say that your numbers are good!!  0.010 is good. Not that familiar with the other number tho. My last numbers were as well. Weird that our lives now revolve so much around the damn numbers!!  I get tested every three months and as the time gets closer I get more and more anxious.  Strange, I am a psychotherapist and have worked with the sick and dying, but when I an sitting in the waiting room at the oncologist's office and see all the other people in various degrees of what ever type of leukemia they have, and some looking like death, I become so incredibly anxious.

It is hard to find a good therapist, probably more so in a small town. EMDR is a good thing but if the therapist can't get it together that is not helpful. If you aren't that far from a bigger city , try EMDR again now, as it will really be helpful.

I'm glad you have some good friends, that is helpful. But unless someone has an illness no one can really understand the fears we have. No matter how many times my oncologist would tell me I'm doing well, it just penetrates only so deep. My analogy is if one has a deep splinter that won't come out and the skin grows around it so it sort of becomes part of you, it dosen't really hurt so much but you ate acutely aware that there is something in your body that dosen't belong there. Don't know if that resonates with you.

I tried to get disability here in the states , I assume that is what you call invalidity, but I was denied as the decision was I could work even with CML as it wasn't life threatening. 

Muscle pain and fatigue are usually a side effect of the TKI that you take. I am on Gleevec. Also some weight gain as it tends to make you retain some fluid.

Have you always lived in Norway? Right now it is so very cold here it feels like Antartica! And we are expecting yet more snow! How old are you? From the ages of your kids it seems you are younger than me. I am 64. Have two married daughters and a bunch of grandkids.

Let's keep in touch. Stay warm, stay positive.

Hi, my insurance pays for Gleevec, it is $35,000 per month!! Yes $35,000! Outrageous! Forgive me if you have posted the answers before, which supplements and how much of each do you take each day?

ive just started Curcumin as many folks on this board say it is very helpful.

you have certainly lived in many places, I’m envious! I have been to Israel, which I loved and London. I’d love to go to Cuba before it gets to commercialized and take pictures. I am a photographer when I’m not being a therapist.

anyway stay warm and keep on going on!!

btw are you on Facebook?

Hey there, hope your son liked his donuts!!  I live about 4 hours north of NY city, in Syracuse. I have 2 grown daughters, both married with kids. One lives in New Jersey the other in Toronto so Im kind of in the middle for driving distance. I understand the tax you have, its the same in Toronto, they jack up the taxes so there can be free medical care. I guess there are pros and cons to it. I pay 8.25% tax on all non food items, which includes supplements.

I was started on Sprycel initially, ($65,000} monthly and after 5 days on it I was hospitalized for 4 days for horrible leg cramps.  I learned from research later on that it was probably the drug mass killing the leukemia cells but wow it brought me to my knees. Anyway, when I switched to the oncologist I have now he suggested that the Gleevec was a better first line drug for CML and I have been on it ever since. Almost 3 years in October. I take the generic one.

As far as supplements, I believe your vit D can be increased. I take 5000 units daily, it was has vit k in it to help with absorption I think. You can have your doc do a vit D blood test next time you have a blood draw to see how much you have in you. Especially in places where the sun is minimal you need way more than you take. Glad your going to start the Curcumin.  I started on Magnesium as was suggested by someone on the boards.

Yup, I am a therapist, been one since 1990. Now I am kind of semi retired, I see patients 2 days weekly.  I love working with couples and their families, but usually I see  individual adults. When I was a newbie I worked with kids but rarely do now.  

Im on Facebook for my kids as well, I get pics of my grandkids that way, but under a different name so my patients cannot look me up!!

When I was initially diagnosed I thought my life was over, I sobbed all the time, closed my practice and was so depressed and frightened it was an awful time. Now 2 1/2 years later, I am better thanks to antidepressants and anti anxiety meds. But I always have it in the back of my mind. I cannot watch commercials that advertise cancer meds for different types of cancer, I cannot watch movies with a cancer sufferer, My family really does not really understand, I don't think anyone who dose not have some type of cancer can understand, the terror inside, the feeling often of waiting for the other shoe to drop, so to speak.  It sure as hell makes you aware of your own mortality!!

Hope you have a good rest of the day, I'm going for my 2nd cup of tea of the morning!

Hi Bendicco,
Yes I have been reading about this and wondering, I took curcumin some years back before CML my chiropractor swears by it,but to be honest I never really felt anything better or worse its I guess pretty individual how people react ,it is like anything too much may not be good..I have bought it but am having a debate with myself ,should I take it or not,I am doing pretty well as I am on my simple supplements .I think some of the effects of these things are physcosymatic ,its like all the fad diets,paleolithic etc,cave man existed in a different era and shit if they did not die young naturally due to all sorts of different deficiencies they were eaten by predators, yet people believe these fads are healthy, so ..I eat and drink almost everything but in normal quantities and hey in the dark ages before meds,I would be dead..so its complicated..uff I bet that does not help,but i listen to my body and if it feels good...the Indians use turmeric curcumin or haldi spices in many foods and they are still Ill, personally I think I may give my turmeric away.
Will write you a bit more later,kids a calling
Harriet