The Leukemia & Lymphoma Society Community: Message List

Re: Report: Nilotinib Associated with Increased Peripheral Artery Disease Rate in CML

communityreply@lls.org — Tue, 14 May 2013 15:30:20 GMT

@ ChrisC;

>This is what your onc is supposed to be informed about.<<

Unfortunatly I have found even among leading CML Specilist, they are perhaps less informed than the board, or perhaps unwilling to share, or admit. Sometimes, if I quote something from the board or a link to a CML study or report, the doc will say "well that is a small percent or that I am miss informed". Several months ago a CML Specialist said Gleevec would become generic 2013, I said no I belive it is 2015. Other little exchanges I have had with more than 1 specialist, makes me wonder if they are so.. uninformed, or not willing to share for whatever reason. Perhaps they are just playing it safe, going by the standard protocol to protect their selves. Maybe the drug companies/sales, down play the side effects.

I think we still live in a day when Dr/Specialist, like us to be somewhat or only barely informed / not challenge them. After all these drugs are pushed thru with short trials and a lot unknown risks. It makes me uneasy to think we are in reality "the clinical trial”, sometimes with little choice, given variables; of the Doctor/Insurance/Billing, & financial repsonsiblites which may be more for some than others.

We do have the patient bill of rights. But than in reality unless you have a strong advocate for you, it may not always work or you may not have a say or choice in treatment/dosage. So do we really have a choice of TKI drugs or dosage & how well informed to the doctor make us, how much trust do we give them with our lives?? I remember a previous hematologist making it sound so easy, like a peice of cake, to change or jump around on TKI’s. To refuse to change drugs or challenge your doc is uncomfortable and changing doctors is in itself stressful.

Having said all that, let me not to forget to say “I am thankful that I was diagnosed in 2005, after Gleevec had become a patent in 2001, (I believe) with some data, and a much better drug, than what was previously avaiable. However after meeting many others with chronic disease, we seem to have one think in common. When diagnosed the doctors say what great drugs and a cure right around the corner, only to realize years later, they tell everyone that, knowing these drugs are far from a cure and a cure is not profitable, just like in many other chronic disease, that have been around for an eternity.

Diagnosed with CML 2005 and still on Gleevec at age 65 years.

The above is only my humble opinion and subject to change.

Re: Weight gain and bloating

communityreply@lls.org — Thu, 02 May 2013 01:46:59 GMT

I have been on Gleevec since 2005. I have recently lost 30 lbs going to Jenny Craig and working out. However the belly fat is hard to get rid of. I did get rid of one blood pressure pill. The other pill is part diuretic & part blood pressure pill. It has been hard to regulate the fluid and blood pressure and the diuretic pill. Blood pressure would drop to 100 or below and cardio doc said don’t take it any more. However after about 4 days my wieght will go up about 5 lbs and blood pressure creeps up to 140/88 or something like that. I know it is just the body adjust the fluids, at least that is what people tell me, however if I don’t take the diurectic a few days the hands will swell up and blood pressure goes up. The pills from Medco were capsule, but I got the same thing from Meijer in pill form. Less than $3.00 for 90 pills. Anyhow I split the pill in 1/2 and that seems to work for 4 or 5 days than blood pressure drops to low so I go off them for a couple of days. I have tried taking than every other day, but it doesn’t work as well as splitting the pill in 1/2. I think it is just something I am going to have to watch and live with. I did cut my exercise back to 3 days instead of 5 days. It seems the more I exercise, my blood pressure gets to llow than I skip a couple of days of exercise and than it goes up. So again I will probably just have to keep taking my blood pressure in the morning and evening and adjust the diuretic as needed. Don’t think there is much else I can do. I hate taking it as have been told diuretic are really hard on the kidneys and by GFR runs a little low.

Pam South

Re: Chronic Fatigue Limits Quality of Life in Imatinib-Treated CML Patients

communityreply@lls.org — Sun, 28 Apr 2013 02:19:08 GMT

Hey Bev,

I’m with you, it’s your body, your life. Go with your gut!!! Especially after I read that article about the US sueing Novartis for kickbacks. I always felt all that money was going into research but in big pharma and ceo and probablly the goverments pockets too. Still no cure for MS and I remember those Jerry Lewis telethones when I was just a little girl and I’m 65 years old. They, health care, always tell you when diagnosed aren’t you the lucky one, got a cure right around the corner. Feel more like a guinea pig for their pocket books, then a cure!! Sounds ungrateful, but I hate the thought of me suffering on stupid drugs when it is no cure while they pad their pocket books. Man made drugs, no natural healthy cures. I remember one oncologist say ( this was back in 2005/2006, in the old days we taught to hit them hard and fast we chemo and most died. I know these are no chemo drugs, but they are toxic and have a long laundry list of warning. Of course the docs say, well that may not be you. Well I say if one toxic side effect doesn’t get you another one will. Are they keeping us a live longer, yes, but what is the quality of living cost, to padding their pockets with some money to live a fancy life style. That is the way I see, not much of a choice they have you in a corner.

PamSouth

Re: Maybe we aren't always wrong to question big pharma's questionable motives? Just sayin' . . .

communityreply@lls.org — Fri, 26 Apr 2013 02:06:31 GMT

Thanks Chris,

In the back of my mind I always thought that was the case, but at the mention of such fraud, others think that I might be a tad pessitimic. But I think there are more and more patients that are cautious these days, of all the drugs that are pushed our way. I think as we age, the medical staff looks at age and other factors and start throwing a lot of drugs our way that perhaps are counter productive, with the combination and multiply drugs we take, who knows how all the chemical work together. I think we are the most over drugged country in the world. But than we do like instant fixes, like now. I think Greed has overtaken our health care system, instead of the best interest of the patient.

Just my opinion.

PamSouth

Re: PCR Insurance Coverage

communityreply@lls.org — Mon, 22 Apr 2013 18:50:31 GMT

Medicare; Turned 65 years this pass January, so my primary insurance is Medicare. Just make sure the blood test is processed where Medicare has a contractional agreement with them. Than they/lab have to except whatever Medicare allow, and it isn’t much that theyMedicare pays. I had my first PCR this year at Indiana University, Indianapolis. Medicare paid a pityful small amount of the labs, PCR, FISH, ETc. I called Medicare just to make sure I didn’t owe anything, they said no, I went to hospital/clinic that agreed to accept the allowable amount.

Pam South

Re: 2-yr Gleevec 400mg PCR Results : Advice?

communityreply@lls.org — Fri, 19 Apr 2013 20:30:07 GMT

Hi Susan.

I learned a lot from this site; people personal experience and from the charts and web sites. Still a lot of things are a mystery to me, probably for the scientist too. For some reason when I was looking at a chart of the Stem Cell ( from Trey or Lucky, don’t remember) and down to the final or last Blood level. Well it really stuck with me, as much as could understand. Because when diagnosed I never had a lot of white cells, but I had 2 million platelets. I just couldn’t get it thru my head why so many platelets and I had asked so many specialist, never got a straight answer. Suppose it would take to long for them to explain and they figure you won’t understand anyhow. But the charts, it starts with a faulty stem cell at or near the top of the chain, so it is in everything, that is why my red cells were abnormal or mishapen and platelets so high, they are not nucleus, but at one point and time, they were formed by that abnormal stem cell at the top of the chain. Therefore I came to the conclusion, that is why the deeper response you get from the TKI is why the lower cells, on the CBC, not just white cells but alll of them, the blood was all made from an abnormal stem cell at the top. Therefore the more powerful the drug the deeper response, the lower counts, that most doc’s treat with pills, infusion, transfusion or whatever. So then my next thought I what point do I say enough is enough and what is the trade off and what is the long term outcome? Then you consider your age and other health issue and money and time and appointments and quality of life, and the big Stree level that doctors say don’t put to much on your plate, yea right. It’s not like one size dress fits all. So everyone must decide for themselves, and lots of time it is just thru time and trial, and error. I really don’t want to be jumping around on TKI’s but there is a big push from the drug salesman to the oncology, & I think they down play the toxicity, etc...

I went on diuretics back in 1997 for a added blood pressure pill. I was told by two cardio and docs and another primary doc they are hard on your kidneys. Then I went on Gleevec in 2005. My Kidney are a little low sometime GFR 60, 58, 52, so I really don’t know if it was a slow burn from the diuretics or the Gleevec or both. I do think the Gleevec had something to do with my Gall bladder, the surgeon that took it out, said it looked good, but the test showed it didn’t work where the tubes opens and close to transfer the bile. So I don’t know and you know what, I bet they don’t either. But if I were to change TKI how do I know what demon or toxicity I will be trading Gleevec for, If not one thing it will be another, and at what dose. Don’t get me wrong I am so... very thankful for the TKI but in the winter of my life (golden years), I want to go to the beach, I want to feel as good as I can. So even if I shorten my life, for me, I will be grateful that I am feeling good as I can. I do have a small gas tank. Like last week I worked out a lot, and I am chilling out today, tired, but a good tired. Hubby off to his part time job and I am going to see if I can find a good netflex movie, and let my body recover from the heavy workout I did last week. Had my pic taken at Jenny Craig last week, down 30lbs, but need to lose more. Still I dropped or discontinued 3 different pills. Thank You Lord. Afraid if I change drugs I will be back on more pills. So that where I am with all this, but you never know, things change, and I could be singing a different tune tomorrow. Who knows what is brewing. I should have learned that by now. One time back in the early 2002 or something like that, I went to have my heart checked out with a lot of test as heart problems run in my family. My brother died last year at 61 years, of congestive heat failure, his first heart attack at age 39 years and 3 defibs. Anyhow I told the Cardio doc I was the healthiest one of 5 siblings, His reply "that you know of." Little did I know I would be diagnosed in 2005 with CML. When I flew to MDAnderson, the oncologist told me I probably had this brewing for several years, So one never knows.

Thanks for listening. Sending you warm thoughts and blessings. May God reward you for being so faithful on this site. You have a wonderful way of expressing yourself to each individual situations. I should learn a lot from you, but it seems I am destined to challenge everything, all though that gets less and less with age, stress level is not as good as when I was young.

PamSouth

Re: 2-yr Gleevec 400mg PCR Results : Advice?

communityreply@lls.org — Fri, 19 Apr 2013 19:57:31 GMT

Dan, Gleevec was suppose to become Generic this year, but I believe they got an 18 month extension. You can google it. I believe it is Generic in Asia or other countries.

Sorry about your increase in the co-pay cost for you TKI. I am one of the lucky ones, knock on wood. I became 65 years old Jan 1st and went on Medicare, however our Chrysler UAW Retiree Drug Insurance picks up the deductible and donut hole for my Gleevec. I was diagnosed in 2005 so grandfather in, not really sure if that will always be true, if Grandfathered in will mean anything for one day to the next, because they will always tell you has to pre approved once a year and is always subject to change. When my husband was working before retiree, we paid very little for healthcare, next to nothing. Then after retirement, things went up every year. Now we pay about $7,000.00 a year but it will probably continue to go up each and every year and least that is the way it has been so far. Still I’m grateful that so far this year I have only paid $22.00 dollar a month for Gleevec 400mg 30 pills.

Best wishes, hope you get to have my say in your dosage!!

PamSouth

Re: Large practices compared to small ones quality of care?

communityreply@lls.org — Thu, 18 Apr 2013 21:18:53 GMT

Hi Bev,

Regarding >Sorry just hard to be positive. Maybe I shouldn't be on here I think it is for people to make others feel better and I'm not.<<

Sometimes I feel the same way, but you know what? It is “YOUR" Story to tell and it is what it is.!! In telling your story, it give others that are going thru their own personal crises, (there are many) to be their own voice/advocate and if they are not able to do that, to find someone who can. We are not alone, no one with Cancer or a disease or disability should feel like they are alone. My husband is retired from Chrysler UAW. I turned 65 years old this last January. My primary insurance is now Medicare, but my secondary is Blue Cross of Michigan UAW RETIREE. I recently called them *Chrysler UAW Retiree", (who hold our insurance in trust) upset about; insurance Medicare/Blue Cross/ Billing/Doctors and other things. I felt like I was banging my head against a wall. Last year I even reminded a Blue Cross case manager, of the patient bill of rights and read them to her, oh my how her attitude quickly changed. Anyhow the Chrysler UAW Personnel said they would be my advocate and speak for me. They did a darn good job, thank you Lord!! I may need them again in the future. The patient does have rights!!!! The doctors should hang the patient bill of rights in their office where they & the medical staff, can look at them everyday, and come down to our level. However on the other end, there are many others that would not want to challenge a medical staff and our more comfortable just doing as told, and that is their decision, but I am not one of them!! I would prefer to listen intently, do my research and ask a lot of questions, have all my medical labs, and make my decision, there are many doctors who are not comfortable with that. So then I find one who is. If necessary I will find another.

Just saying..... It is what it is. This is not always a feel good sight, but we also gets lots of info, good/bad, and can vent, and people get it or at least you will find someone with a similar circumstance. Except for this site and a couple of close friends I don’t talk much about the concerns of CML and the health care system, very little to family. My daughter is a nurse and her husband is a GI doc and they are the last people I vent to. They see the healthcare from a very different perspective than I do!! I am sure this is not the case for all who have family in the medical field, but for me it is. But having watched and cared for my mother for 3 years to her death and having been the caretakers of others. Also did vital sign with a Medical Missionary group, as they said I had so much experience with taking care of my mom and all, I learned in the trenches of the poor and third world countries. I sometimes think maybe these were precursor experiences, I needed before being diangnosed with CML. I do think that some of the hollywood stars that have cancer, like to do their tour speeches, but I believe they are pretty wealthy to begin with, and get extra good medical treatment and can afford many caretakers to look after/out for them. Sometimes they make it sound like their cancer treatment was a cake walk.

AS THINGS CHANGE, STILL LEARNING SOMETHING NEW EVERY DAY. Get knocked down, you get back up, that’s what you do!!

I have to say, without my Heavenly Father and knowing I have an eternal home, and HE holds my hand, and walks with me 24/7, my bestess friend,

I would be in a very dark place!!

Blessings, PamSouth

Re: 2-yr Gleevec 400mg PCR Results : Advice?

communityreply@lls.org — Thu, 18 Apr 2013 19:41:29 GMT

Hi Dan,

Regarding Resistance/Mutation, I really don't know about that. I have my own view, which probably most people do not share/agree. I think there are a lot of theories, not facts, and not everyone fits into one mold. The drug are rushed thru so I feel like a guinea pig. Although there may be a need I do not try or care to jump around or be on a high dose to reach MMR, I prefer to be stable and have a better quality of life and less drugs. I think the Big Pharma plays down the side effects and the tocity. I believe even if I were to have a deep response my body would still produce a bad cell. So it is what it is no cure, just drugs, that keep me alive but I get to decide at what cost, or trade off at least to some degree. It is sad that we do not have more say over our treatment and are made to feel like we have to take a standard dose or at least until we suffer enough. Some things we may recover from and some, I don't know? There are young, middle age, elderly, with different medical problems, besides CML. One CML cell is one too many, so as far as a higher risk, well yes, but at what expense of the drug to get to MMR, they are still toxic and each has their own demons. When the doctor say higher risk, I say and what is the trade off and it is all a risk, experiments and clinical trials. For those that have no choice or are in acute stage or multiple cancer they have a different story to tell. Don't get me wrong with out them we would die. As far as mutation, that still can show up no matter what level you are on. So I'm am little leary to jump around on the different TKI's. Am looking at a mirror of myself, a 65 year old woman with a 71 year old husband, who is working part time, but suffers from memory loss. 3 adult children and 6 grandchildren. Taking care of my dying mom for 3 years and care taker of another family member who was in ICU 30 day an acute hospital and rehab, for a total of 88 days. So I have learned a little bit about the medical profession, dealing with insurance & billing, and cancer...

I joined Jenny Craig weight loss in December and have lost 30 lbs or so. I reached my goal, so they took my picture today, you know before and after. Yesterday my husband told me how much he appreciated me and how beautiful I looked and much he loved me. I haven't heard that for many years. That's alone was worth my quality of life!!!! I was just recently told by my cardio doc to stop taking my diuretic and lorazapam. The only pills I now take are Gleevec and Fish Oil for my cholesterol. We are leaving for Florida in May for 5 weeks. I have diligently worked out from a crawl to a run, to dancing, Zumba, stretches, yoga, weights, my elliptical, to eating healthy. It is wonderful to feel this good. That at 65 years old there is a quality of life for me at CCYR for 8 year +. I intend to stay the course, unless something drastic would go wrong.

It is so... good to feel good and look good. To have clarity of mind and balance, no GERD, itching, fluid, heart or lung problems brain fog...... Done been down that road!!

My kidneys are a little low, but hope that will fix itself since I no longer take a diuretic.

We are not just a physical body, we are Spiritual, body, mind. All three go together. Staying the course at CCYR!!

Blessing, PamSouth

Re: 2-yr Gleevec 400mg PCR Results : Advice?

communityreply@lls.org — Wed, 17 Apr 2013 18:18:11 GMT

You probably already know this, but I see by the other post that no one reminded you that even if you test were undetectable, you could still ride just under radar, and have a million + leukemia cells, that PCR Testing is not capable of seeing. You could have a dozen different test and come up with a dozen different answers. I mean it is a drop of blood they are looking at, just depends on the drop they happen to be look at me. IF I am mistaken, or someone would like to pick up on these thoughts. Go to it!!

PamSouth

I am just happy to stay in CCYR range for 8 years, and have a good quality of life, without low counts or taking other medication. I have lost 30 lbs thru Jenny Craig. I dropped my blood pressure pill and only need to take a diuretic ever 2 or 3 days. IF I continue to exercise and lose weight I probably will not need the diuretic at all. The only other med’s I take are 1mg Lorazapam 2x day and 2400 mg daily of fish oil, to help keep my cholesterol an triglycerides.

down.

I never cared to try Sprycel unless it would be at 50mg permanent and my counts went down. I don’t know how I would like Tasigna, with the time of fasting before and after taking twice a day, but it would only be at a low dose. I think for me I would only try Sprycel at a permanent 50 mg daily or lower, and if it did not help my counts to go down I would stay with the gleevec. I feel that most people who encourage the high dose with a poor quality of life and treat side effects with other med’s and transfusion or whatever, and their life becomes all about cancer and doctors and labs and testing....; are probably those who take a low dose TKI of whatever and don’t have to deal with the multiple side effects and will probably not have to deal with those nasty short/med/long term side effects when they raise their ugly head long term. Two years after I was on Gleevec I lost my Gall Bladder, Surgeon said no gall stones, looked healthy, it just did not work anymore. Kidney slightly low probably because of taking diuretics since 1997 that was used in the beginning as a blood pressure pill, but now I am dealing with the long term use of diuretics. Can cause Kidney failure, Metabolism problems, under-active thyroid etc.

The above is only my opinion, not from a medical doctor, with the exception of the diuretic pill, have been told my 3 cardio doc and one internal med doc that they will ruin my kidneys. So it seems to me there are a lot of trade off. The less pills/tocity my liver and kidneys have to deal with the better.

PamSouth