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[…] Cancer Coaching-Chronic Myeloid Leukemia […]
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I am newly diagnosed CML
Do I have to be careful in public while under treatment?
Hi Alison-
I am sorr to learn of your CML. I assume you are asking about your immune system being affected by possible germs from other people. The answer depends on your stage and possible therapies. This issue is best asked of your oncologist. He/she will know how your immune function is working.
Good luck,
David Emerson
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I were diagnosed, cml active in 2009. Advised to consume Imatinib, and still now I am OK. I never missed tab. But occasionally blood comes out of my nose and mouth in small quantity. And disappear for a year. And rest all is OK
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Hi David, I have recently been diagnosed with CML and would really like your thoughts and comments about Rev. Hanna Kroegers theory and treatment for Leukaemia if you have one.
I have been advised and prescribed Gleevic but as yet have not started as I feel that there has to be another opportunity out there to cure myself. Your thoughts warmly received.
Hi Pauline-
I am sorry to learn of your CML diagnosis. I have no experience with Rev. Hanna Kroegers.
The importance of conventional or non-conventional therapies depends largely on your stage at diagnosis. Chronic, accelerated or blastic phases all mean different levels of severity. Gleevec, as a conventional therapy is warranted depending on your stage- this drug can be extremely beneficial but you must understand the risk/reward profile as well as those nutritional, supplementation and lifestyle therapies for your CML management.
I am a cancer coach. I would like to work with your further. To learn more about cancer coaching please go to
peoplebeatingcancercoaching.org
Hang in there and let me know if you have any questions.
David Emerson
Reply
hang in there! i’ve been on dasatinib for nearly 1 year after diagnosis through lab tests and bone marrow biopsy. after starting treatment, slight headaches for a couple weeks that resolved. a nurse practitioner thought i might get nausea and prescribed anti-naseau pills, but i really didn’t need them. about 6 months under treatment, i started experiencing recurrent minor acne issues which stopped about the 11 month mark. no hair loss, or any that i could tell of…whew! latest labs seem to indicate the chemo is working. at least it’s not a drip (imagine the damage to veins)…only an oral pill once a day. everyone can have differing side effects, but rest assured it can be managed.
healing thoughts and wishing for remission to all.
Reply Hi Bgriffin-
Thanks very much for you input and experience. Were you diagnosed with CML? What stage? What symptoms? Is dasatinib your only therapy thus far? Don’t mean to be nosey but readers will benefit from your input.
thanks
David Emerson
Survivor, Director PeopleBeatingCancer
apologies for the delayed response!
after biopsy, the result that i was in the chronic stage. this is very typical for those first diagnosed. what is helpful to know is that everyone should visit their regular doctor at least annually and have blood labs done. cml is one of the few leukemias that can be caught early, indicated by elevated white cell counts. keep in mind that sometimes elevated white cell counts can be caused by injuries. this is why potential patients much have a few labs drawn over a period of time to see if those cells increase or decrease.
i cannot express how important getting regular lab work is, even if you’re healthy! i could have easily been diagnosed in a more difficult to treat stage, such as the accelerated or blast phase if i slacked on annual doctor visits or labs.
dasatinib is currently my treatment. however, if at the 18 month mark i do not reach complete cytogenic response, the hematologist/oncologist may switch to another medicine. i’m at the 15 month mark and won’t know until my next lab work. even if i do not reach cytogenic response where cml becomes nearly undetectable, the chemotherapy is keeping it under control.
what we need to keep in mind that of all the periods of time to be diagnosed with cml, having it this day and age means it is treatable with current medications. had i, or anyone else, developed cml a decade or more ago…the outlook is not so good.
healing thoughts and wishing for remission to all.
Reply oh, i forgot to mention: there were no symptoms before diagnosis by lab and biopsy.
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Hi
I was diagnosed Aug 27th I will begin treatment with 100mg Sprycel tomorrow. Unlike you I am a smoker but have no other health issues at all. No I do not have lung cancer- heart issues- other than CML I am pretty healthy. Just wanted to wish you the best and say you are not alone….
Hi Bev-
Thanks for reaching out. Is there any info I can research for you? Maybe therapies that integrate with Sprycel? Some chemotherapies can negatively effect one’s heart. It’s up to you. In any case, good luck tomorrow.
Take it easy,
David Emerson
Reply For clarification. My primary doc thought it was NOT leukemia but a possible leukemoid reaction. She sent me to an oncologist primarily to rule it out. The Onc however
Diagnosed me with CML.
Hey David,
I just got back from my bmb appt. The procedure wasn't as painful as I thought. The doctor took her time to numb the area before inserting the sampling tube (or whatever it's called). I won't get results for about a week, but from she knows so far, she tends to think I should be in remission in a year. I hope she's right.
How long ago were you diagnosed? What was your diagnosis and what has your experience been so far?
Greg
Hi Greg-
Sounds like oncs have gotten better at bmbs. I don't remember a sampling tube, I remember a big needle.
I was originally dx'ed with multiple myeloma in 2/94. Several years of aggressive therapy, induction, asct, etc. relapsed twice. After second relapse and "nothing more we can do for you," I underwent antineoplaston therapy at the Burzynski Research Institute, achieved compete remission by 4/99 where I have remained since.
When your bmb results come back and you talk to your onc, make sure you get a specific diagnosis and stage. And a prognosis of course- not just a therapy and time to remission but
1) what percentage of stage X patients achieve remission based on your recommended therapy?
2) what sort of side effects can I expect based on your recommended therapy?
3) on average, how long do stage X patients stay in remission with chemo X?
4) If I relapse what is the next step?
I am not saying that achieving remission in a year is not desirable in any way. It is. What I am saying is that it is important to identify as many surrounding issues as possible. You are young and otherwise healthy so you should be thinking about the longgggg term.
Keep in touch and let me know if you have any questions.
David
Hey David,
I guess things haven't changed. It was actually 2 big needles. One to to get the marrow, the other a "plug". The onc took the sample from my lower back so I didn't see what was going on. My wife was in the room and told me later that she used one needle initially to numb the area, then the 2 needles for the sample.
Anyway………..
I'm saving your email, so I know what questions to ask when the results come in. My next appointment isn't until the 23rd. The waiting / not knowing is probably the worst part of this. What do you know about the Cancer Center Treatment Center of America? The nearest facility to me is in Arizona ( I live in San Diego, CA). You mentioned the Burzyski Research Inst. Where is that located?
RE questions: Expect a lot of emails from me. I look at you as the experienced veteran and I'm the rookie.
I truly appreciate all your help,
Greg
Greg-
As we discussed, you are going to get a bmb tomorrow. Also, you have already had a sort of second opinion as I read that two different DR's dx'ed you as CML. The bmb tomorrow should result in a specific stage and prognosis. As a relatively young, newly dx'ed cml patient with a healthy lifestyle the basic prognosis and epidemiology excerpted below puts you in good shape.
As for alternative/complimentary/integrative therapies for cml the literature did not reveal much beside nutrition, basic supplementation and a healthy lifestyle.
Regarding your concern about side effects of chemotherapy, I did not find much of any posting about side effects from gleevec- "I am doing well on Imatinib, known by the product name Gleevec…." Therefore I would read and consider green tea extract and curcumin (below) as general integrative therapies for leukemia. Of course you need to talk to your onc about this. FYI- I take both green tea extract and curcumin daily to keep me in remission from my blood cancer, multiple myeloma.
http://peoplebeatingcancer.org/search/node/leukemia%2C%20green%20tea
Let me know if you have any questions, comments- good luck.
David
Comment: CML (Chronic Myeloid Leukemia)….. That was my diagnosis 3 days
ago. I went in for a routine annual physical at work and was told my white
blood cell count was high. I had another blood test through my personal
physician – still high, but she thought it might be just a leukemoid reaction
to overtraining and stress. She referred me to an oncologist just to rule
out leukemia. Of course, the oncologist came back with the CML finding.
I'm going in for a bone marrow biopsy Monday. Both doctors assure me that if
I had to contract cancer, CML is the "best" one since it's usually treatable
through meds. I'm a 51 year old male who doesn't smoke. I rarely drink. I
eat right and I exercise regularly. My main fear is the side effects of the
meds (vomiting, diarrhea, rash etc) and the possibility that it won't "take"
and I'll have to go through Chemo or a bone marrow transplant. Thoughts??
Prognosis
A follow-up on patients using imatinib published in the New England Journal of Medicine in 2006 showed an overall survival rate of 89% after five years.[19] In 2011, an independent study performed in 832 CML patients worldwide reported that the group of patients who achieve a stable cytogenetic response with imatinib shows an overall survival rate of 95.2% after 8 years, which is similar to the rate in the general population. Only 1% of patients died because of leukemia progression.[12]
Epidemiology
CML occurs in all age groups, but most commonly in the middle-aged and elderly. Its annual incidence is 1–2 per 100,000 people, and slightly more men than women are affected. CML represents about 15–20% of all cases of adult leukemia in Western populations.[1] The only well-described risk factor for CML is exposure to ionizing radiation; for example, increased rates of CML were seen in people exposed to the atomic bombings of Hiroshima and Nagasaki[20]
Leukemia is also rarely associated with pregnancy, affecting only about 1 in 10,000 pregnant women.[21][22] Chronic myelogenous leukemia can be treated with relative safety at any time during pregnancy with Interferon-alpha hormones.[21]
http://en.wikipedia.org/wiki/Chronic_myelogenous_leukemia#Treatment-resistant_CML
Reply Greg-
Thanks for this clarification. Based on the fact that your pcp did not immediately conclude a dx of leukemia, my thinking is that you are at an early stage of whatever it is. This is good. Your bmb should add more info to whatever dx you get. Please be sure to get 1) a specific diagnosis, 2) a specific stage and 3) a prognosis (what therapy or therapies is recommended). The more info the better.
Please let me know what you find out. thanks
David
