I was diagnosed with CML on my November 12, 2008. I had been feeling bad for quite a while and when I went to the doc, my white cell count was high and she sent me to the Hematologist who did tests (Blood labs, Full Body CT Scan, and a Bone Marrow aspiration). 6 weeks later he told me I had CML (PH+). He gave me a prescription for Gleevec and pushed me out the door. I feel like I have researched a lot but there is still so much I don't really understand. What is frustrating to me is that I have so many health problems /issues before the CML diagnosis and since. If I ask the Oncologist if the health problems since the CML have anything to do with my medication (Gleevec) or if I should change meds, he quicky denies that my health problems have anything to do with CMLor Gleevec and I should stay on Gleevec. To outline, before I was diagnosed with CML I had diagnosis' of: Fibromyalgia and Chronic Fatigue, a Bladder Disease known as Interstitial Cystitis with Hunners Ulcers (that rupture and bleed); Endometriosis prior to a full hysterectomy and bilateral oorphrectomy and pelvic floor dysfunction. I have Scoliosis, Degenerative Disc Disease of the cervical, lumbar and sacral spine with spondyliosis, and arthritis in my spine, the discs in my cervical spine are pressing on nerves and flatening the spinal cord, causing some weakness in my arms and legs. I also have sciatica that flares up periodically and I get injections of cortisone in my spine to help me walk, as well as constant pain meds 24 / 7. I would not be able to function without the pain meds. My liver has some scaring from previous endometrial tissue and I have several cysts on my liver. I have many GI issues including gastoparesis (slow emptying of the stomach contents) and colon polyps which were pre-cancerous on 2 previous colonoscopies over the years: I have had several pre-cancerous moles removed, and if the dermatologist had it her way, I would be in her office every 6 months having more removed....but I am tired of being poked and probed and cut on unless its' absolutely necessary, I have trouble eating more than small meals at a time and eat very little. Recently I went to my primary care doc complaining of feeling worse than USUAL (which is pretty darn bad for me), and she did some blood tests and said my liver function was "off" and myCPK enzymyes were high and she wanted me to see the Rheumatologist for that. The Rheumatologist explained that CPK enzymes were muscle dying in the body and I said I know, I had researched it and also on FDA's website, Gleevec has reported that sometimes blood results can come back with high CPK Enzyme levels. She pressed on and said that she was concerned about the weakness in my arms and legs and did not think it was coming from my spine, and sent me to a neurologist for an EMG. The EMG was abnormal in one area of the right leg and although I think it's probably from sciatica, the Rhematologist pushed on for an MRI of my thighs since that was where the EMG showed the abnormaltiy. The MRI showed thigh muscle to be normal, but bone marrow to be of concern (of course the doctor that read the MRI probably never read the forms I filled out for 1/2 hour in the waiting froom that said I have CML) - and the MRI reading doctor recommended the bone marrow be followed up by Xrays of the bone. My Rhematologist called me and she agreed that I should discuss that with my Oncologist and she was not going to pursue Xray's of the bone, but she wants me to undergo a muscle biopsy (a 2" cut with no anesthesia!) she said that if the doctor used anesthesia is would "compromise' the muscle tissue. I went to the Oncologist this morning and he does not see any reason to be concerned with the bone marrow (by the way did I mention he has not done a bone marrow test in nearly 5 years since I was first diagnosed?) and the fact that I am so weak that I can barely walk, and I am in pain alll over my entire body, and I have a fever and blood in my urine, has nothing to do with having CML or being on Gleevec at all. Honestly, I see this Oncolgogy group every 6 weeks and I wonder if they are doing anything except deny, deny, deny. And this rheumatologist is so eager to cut on me, it scares the hell out of me. If its' negative, it just rules out another muscle disease, so it could go on for more and more tests. The worst could be ALS or Lou Gerrigs' disease, or it could be Lupus (I have many other indicators of lupus), or MS, or there are so many muscle diseases. Honestly, I am so depressed, I asked what would she treat me with if she found a muscle disease and she said "high doses of steroids" which makes me depressed just thinking about it. I am soo confused and depressed I don't know if I should have the muscle biopsy, change Oncologists, or just do nothing and hope I die in my sleep one night. I am asking yall' out there, that are sick with leukemia and other illnesses, to give me your opinions and let me know what you would do if you were me. My friends run from discussing stuff like this and If I go to my therapist for help, she will just say to have the muscle biopsy. I am tired of chasing down what's wrong, but I am weak and in pain. My CML is in MMR at this point and by BCR/ABL comes back every time with good numbers/reports. I am just frustrated and tired of being sick.
Frustrated and Confused
Posted 14 May 2013 - 04:40 PM
Hi Elsa: You can make yourself crazy if you try to figure out why you have all the ailments that you have. The Gleevec has worked for you to get you to MMR, and I am under the impression that your not at PCRU, but your numbers are holding according to what you said.
Do not try to dwell on all the things that are wrong with you besides the CML. I never mention all the things that I have wrong with me, as I deal with them a different way than I do the CML. I look at the Gleevec as the Magic Bullet that has gotten me through almost 13 years.
I see doctors for Parathyroid Disease, Chronic Kidney Disease, Sciatica, IBS, Diabetes, Degenerative Disc Disease. I am in a lot of pain today with the spine, and its generating down my legs. So I am taking it easy today.
I have been in the hospital for a huge blood clot that took up my whole leg. I have had Phlebitis too.
Arthritis all through my neck, spine, and knees. I have constant issues with my weight. Now I am scheduled for a test the end of the month for Hernia and possible Ulcers. I cannot dwell on all these things, because I think it just makes us feel worse and more negative.
It is frustrating and you get tired of being sick, but think about the years you have lived with CML without needing a BMT. I still suffer with a lot of side effects of the Gleevec everyday. I did not lose a lot of them, but they are better than when I started Gleevec.
I Thank God Every Night Before I Go To Bed for the day I had no matter what it held for me. I thank him for letting me still be here to take care of my family.
When I was diagnosed back in 1998, I thought for sure this is it. I never thought I would see the year 2000.
Try to think of the good in your life and all the Positive things, because I am sure there are many.
Please join in here with us anytime, and you will see what everyone is dealing with. Share and we will share in return.
Posted 14 May 2013 - 09:08 PM
The pain in muscles and bones could easily be the Gleevec. You have several other issues that are unrelated to Gleevec and CML, but you already understand that. You do not need a Bone Marrow Biopsy for the CML since they are fairly useless after CCyR, and you are way beyond that.
I personally would not let any rheumo-doc have me cut on. It seems like a useless enterprise which can only lead to more pain and no answers.
Have you had a GP doc try to diagnose the symptoms that might be Lupus?
Posted 15 May 2013 - 05:44 AM
Thanks...I know everyone has tons of stuff to deal with and I am thankful for the good things....there is just too much bad (more than just my health) and I am overwhelmed. Thanks for the encouragement
Posted 15 May 2013 - 05:52 AM
You know you are probably right! Ever since I started taking Gleevec I have complained about bone pain....it gets so severe at times, I cannot even stand up for too long and have to sit or lye down. The muscles seemed to be separate, they sort of tingled or quivered, like a creepy crawling feeling that made me feel weird, like I was not going to be able to walk. Then I got tendonitis and my arms kept getting weaker and I just feel horrible. I feel bad if I forget to take the gleevec and I feel bad when I take it..so I don't want to complain too much its been a good medicine. I feel stupid, I dont understand many of the initials on the blog, what is CCyR? By the way, the rheumatologist does not do the biopsy- she gave me the name of a general surgeon to go see and she would give him instructions for what she wanted...but I don;t think i am going to do it. I do think its Lupus and she has enough positive results (ANA titers, positive double strand DNA, etc) to make that diagnosis.....and all the symptoms, rash, pain, etc. I am so frustrated, I cannot get her to just treat Lupus and stop digging at me! Thanks for your help!!!
Posted 15 May 2013 - 10:24 AM
Given your other health ailments and what I know about Gleevec, I would switch to another TKI drug. I was perfectly healthy before CML and Gleevec caused me a lot of muscle problems. I switched to Sprycel and it is better, although still problematic, just not as bad as on Gleevec which got to be too much. If you already have muscle problems Gleevec is probably the worst TKI to be on. I would sicuss with Onc about changing to another TKI drug. If he is not interested in discussing this with you then I would seek out another oncologist. Life is too short to suffer and it is highly likely that Gleevec is making you suffer more.
Posted 15 May 2013 - 11:18 AM
I was dx with CFS and Fibromyalgia 10 years before CML. I go to an Infectious Disease
Specialist for CFS and he treats this very seriously. The Gleevec has flared up all the
CFS symptoms as well as fibromyalgia. I hurt all over all the time. I also have Degen.
Disc Disease and Ostearthritis. I have had positive ANA's but did not pursue the RA
or Lupus. Fatigue and pain are so bad that most days I can only sit or lie down, standing
or driving exhaust me. My world has become so small and I wonder how does my
body,wearing out from all this, not shut down. But I keep waking up each morning.
It's o.k. for you to talk about all your other health problems here. CML is just
a life-altering disease, but the other problems make us miserable, too.
And I cannot even begin to talk about the cognitive problems.
(I was dx around the time of you and although I reached CMR, the PCR showed
increase in April). I worried at first but now...what the f....k.
Take care of yourself.
Posted 15 May 2013 - 12:03 PM
Thanks so much! I have been very frustrated with my Oncologist and I went to another for a 2nd opnion and unfortunately I went to a large University Hospital/Cancer Center where they teach. The experience I had was so horrid I hate to even write about it - they gave me an appointment (that I had prepared for and looked forward to for weeks to ask some important questions and consider changing Onco docs)...and they gave me to a STUDENT! She had was not even a doctor I found out when I came home and researched her. She was this big doe-eyed little lady that flirted with my husband (who went with me) and said to me that I was perfectly fine and I asked her a question about medication and she said "well...um...and started punching computer keys to look up the answer" and my husband told her to please look it up that NO ONE can memorize a PDR (physician's desk reference) which is larger than a bible when it comes to meds and side effects,etc. she pretended to know the answers. The day I went, my eyes were real swollen (from the Gleevec which happens if I don't take the diuretic on a regular basis), and they were watery because of allergies...and she said to me "Oh, you're not going to cry are you?" in this very condescending manner. I am still mad at myself for not writing and complaining...I just wanted to get as far away from that place as possible. I hope she never ends up being a real doctor (scary). Anyway, I am not sure how to go about finding a good Oncologist, I guess word of mouth? LLS even told me I should look for a cancer center when I told them some of my concerns a couple of years ago. There is NO WAY my current oncol. would switch me from Gleevec. I swear I used to think he owned stock in the company that makes it, because he swears it has not caused my problems....but I know my body and Gleevec has caused many problems FDA and the Gleevec websites even warn about congestive heart failure (which runs in my immediate family) and ventricle dysfunction - which I mysteriously now have and a leaking heart valve,,,but according to the oncologist it was not because of Gleevec (denial). Thanks for the suggestion, I just need to find someone and do it and change to a new doc and get on another TKI Medicine. Thank you again!!
Posted 15 May 2013 - 12:18 PM
Simone - Thank you ..OMG, when I read your post I thought we must be related. I cannot believe it... You have so many of the same things I have and I have wondered if the Gleevec has been the cause of the flare ups... my GI doc said it was.... my doctors all send me from one to another but no one really helps this all over body pain. Your words could be mine "I hurt all of the time....and ....I wonder how my body, wearing out from all of this, does not shut down.....But I keep waking up each morning". Those could be my words to a T. I am surprised when I wake up in the mornings I hurt so much. I need to find an Infectious Disease Specialist in my area that takes my insurance, maybe that would be better than this Rheumatologist. I too have cognitive problems that are sooo bad I think one day my mind is just going to slip away....and I won't know anyone or anything...... I feel bad for you too. Thank you for writing a reply to my question, I am getting some good suggestions, but I really felt like we have had twin experiences almost. Would you ever consider changing from the Gleevec?
I feel stupid, the blogs and posts always talk about things in initials....I need some help from everyone. I know that MMR is Major Molecular Remission and CMR is Complete Molecular Remission - whats the diff? Is Major a partial remission and Complete a full remission?
thats what it sounds like to me reading the LLS stuff. What is PCR? and CCyR? If anyone can fill me in. My doctor never gives me numbers, so I don't know what everyone is talking about and I feel so stupid when they talk about their increases and decreases. They just give me my WBC and RBC, if I am anemic and platelets and thats it - when I asked for a copy of my BCR/ABL they acted like I was asking for the crown jewels. And no one has explained it. They just tell me that there are 3 diff sets of numbers because of 3 diff types of cells. I feel like What the f....k too. and just don't even try to think about it anymore..but obviously I am trying to get answers. Thanks so much for your help Simone!!!! I hope you feel better soon!!!! If it's possible?
Posted 15 May 2013 - 06:59 PM
Please go and find a new oncologist. This disease is on the CUTTING edge of science. The CUTTING edge. There are so many new aspects of the drugs that they learn on a daily basis, that if you are not seeing someone who is willing to put in the time to really understand what you are going through, then give them the boot. You should be able to communicate with all your doctors, and have them communicate with each other. You drive this bus. Your oncologist does not have cml. YOU do.
Ask here on the board for some recommendations for oncologists in your area. If you are in the Seattle/Tacoma area I can give you some names.
Posted 16 May 2013 - 10:43 AM
Thanks Caroline..you are right! This is on the cutting edge of science and every day they are making more progress. We should not have to suffer with all of this pain. After my visit the other day when I saw the Oncologist's PA (Physician's Assistant) which they make me see every 2 or 3 times and I see the doc every 2nd, 3rd, or 4th visit if I am lucky. They (Onc.) don't care about the other health issues and the pain and suffering at all! I have resolved to find a new oncologist. I have a lot of "stuff" to take care of, other than this, in May and June, but maybe by the next time I post a question, it will be with a new Oncologist and a new outlook on life....lets' hope. Thanks for the encouragement. By the way, I am on the East Coast, I have a Nephew that lives in the Seatttle area and loves it - says it's great out there. But thanks for the offer anyway. Good luck to you too,
Posted 16 May 2013 - 01:26 PM
If you specify where on the East coast someone can provide a recommendation for you. NY area by chance? I can recommend someone very good in NYC.
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