My name is Shara, I was diagnosed with CML yesterday! Went in for a physical came out with CML. I am scared! I have w2 girls ages 2 & 4 and an amazing husband. I am only 30! I get a second opinion next week at Md Anderson in Houston where I live. I will be honest. I hate medications. I don't even take Advil for a headache. We love organically and I would love to knock this out naturally! Any suggestions on this? I'm afraid to get on Gleevac. I want my normal life back and I don't know how tonged there. Im in a BAD dream!!
New Mom with CML newly diagnosed.
Posted 03 February 2012 - 01:32 PM
Shara, Welcome. I just joined the group today but was diagnosed in August of last year. I also Visit MDA once a month now. Great doctors and great advise from them.
Posted 03 February 2012 - 01:58 PM
Love your name!!! It is the same as mine, spelling and all. Sorry you had to join our little group this way. But you have found a great sounding board and people with lots of information to help you out of almost anything. As far as treating CML naturally. I have no answers for that. I only way I have heard of to keep CML at bay is the imatinib mesylate (Gleevec) dasatinib (Sprycel) or Nilotinib (Tasigna)?.
Posted 03 February 2012 - 02:00 PM
I know how scared you are and I can understand you not wanting to take drugs. I'm very much for curing things naturally. I've got a bottle of tea tree oil for skin infections. When I have a sore throat I use a couple drops of oregano oil and swish it around in my mouth, swallow it and no more sore throat. Point is, I'm all for the natural approach with a lot of things, but not with CML. This is not something you want to gamble with. Please take the gleevec. There are side effects, but you will get through them. I've been on gleevec for 9 months now. For the first 3 months I got a lot of bone pain, but that went away. Now I get the occasional cramps in my hands and feet and I get some swelling around my eyes. But I can live with that. It's good that you're getting a second opinion. I don't blame you. You should arm yourself with as much information as you can. And you can supplement your treatment with natural products. I know at least one other CMLer (scuba) who takes curcumin to supplement his treatment. I've started doing that too. But please take your gleevec if that's what they prescribe for you.
Posted 03 February 2012 - 02:07 PM
I agree with Rissa. I am all for organic and natural stuff, but science isn't all bad. If we had normal tumors, I might be tempted to try something. But the way our stem cells work, it's really not feasible to do anything else than the TKIs. My wife insists all I would have to do is drink water that is less acidic than tap water, and I wouldn't have CML--and that I drank normal water is probably part of what caused it. It's really annoying to me.
Anyway, there aren't any natural treatments I've heard of, although curcumin seems to augment, but not replace, some TKIs.
Posted 03 February 2012 - 02:58 PM
Hi Shara: Welcome to our group. You were diagnosed just like so many of us. That is the thing with CML, sometimes there is no warning. You just go for a routine blood test, and maybe you have been feeling a little tired or something.
Then they tell you that you have Leukemia. This is very scary and new to you, and your going to one of the best places to be treated. We have a lot of people who have to travel to get there, Your already ahead of the game being you live so close. Let them explain what they will do before you start worrying about using a natural cure. Organic is great if that is what you want to do, but sometimes it takes more than that.
You have a great family from what your saying, and your young. Do what the doctors suggest, and fight off those Cancer cells with whatever they tell you they want to do. They are experts in the treatment of CML, and they know what they are talking about.
We have a lot of young people like yourself lately, who are being diagnosed with CML. I was in my 50's before I got CML, but also found with a routine blood test. I have done what I had to do, and its been 13 years for me now.
Please stay in touch with all of us, and get the support from people who know what your going through. Then along with the love of your husband and children it can only get better.
I am on Gleevec, but there are other TKI drugs which they might suggest. There has been amazing response to all of the different treatments. We are very blessed in this day and age due to what they have learned about CML and how to beat it.
Posted 03 February 2012 - 03:01 PM
Hi Ken: I just saw you were another new CML Patient that has joined us. You can see we have gotten so many newbies as we sometimes refer to newcomers. I would like to welcome you also, and hope we get to know you.
I am sure just from reading all the responses that you can see all the support you want can be found right here.
Keep us updated on how your doing, and ask as many questions as you have at anytime.
Posted 03 February 2012 - 03:04 PM
Hi Shara. I know exactly how you feel.
I am also 30. I have 2 sweet girls 4 & 6 and one little boy who is 17 months.
I was just diagnosed on January 5th. I am also all about living naturally, I never took medicine before this, but I am taking Gleevec and it is working great! I am still taking care of my body, eating as clean & organically as I can, drinking plenty of water.
It's so hard at first. I felt like I was a different person after I found out. I am a different person now, but every day it gets a little easier. I have days when I'm scared, days when I'm mad, days where I'm just sad, and then days of complete joy and thankfulness that I have a drug that will help me live.
This group is great so ask as many questions as you can! They know a ton!
Posted 03 February 2012 - 04:39 PM
Welcome and sorry you ended up here. You will likely be just fine. Don't worry, you won't be leaving those sweet little girls.
Now, that said, as the resident chemist around here, I just have to say...
BETTER LIVING THRU CHEMISTRY!!!
Thank goodness for all those chemists and scientists who brought these wonder drugs to market!
Couldn't resist giving my peeps a shout out.
Posted 03 February 2012 - 04:54 PM
First, I want to say welcome to the group. Post as often as you like with questions or if you just want to vent. We are all here for you. Regarding taking the meds, I feel the same way you do, I hate putting chemicals into my body but we really have on choice. Without these meds we would not live and with these meds we will have a normal life span, and a good quality of life. It is such a shock at first to be dx with CML and find out you have to take these meds but you will adjust. You need to give yourself time to adjust to the idea of having CML as well as to the meds but you will get through it. You are not in this alone.
Posted 03 February 2012 - 05:11 PM
Posted 03 February 2012 - 05:17 PM
Posted 03 February 2012 - 05:29 PM
I understand everything you are saying, I also don't like taking any type of medication, let alone something as strong as Gleevec. What you will learn about CML is that it is a genetic disease and it is an exceptionally predictable and efficient killer. Sorry to put it so bluntly, but it is important to understand what you are up against. Entertaining thoughts of treating CML without TKI drugs is not something you should be bothering with. It is still early for you so I get that you have a lot of thoughts to work out. Here's what you need to know with regard to the drugs. Prior to TKI treatment being introduced about 13 years ago, CML was a terminal disease with the only real chance for survival being a stem cell transplant which is a very difficult and risky procedure. A small minority were able to tolerate a very powerful drug called Interferon and some of those people were able to control their CML. With the introduction of TKI drugs, CML was transformed to a terminal disease with expected survival of 3-5 years from diagnosis to a manageable chronic illness that if you respond well to the mediation (most people do) as long as you continue to take your med, CML should not shorten your life. The side effects can be a pain in the ass, some get them real bad, some get none, most of us fall in the middle, enough to know they're there, but not so much that it stops us from living a good life. I fully expect to see my young children grow up, I continue to work, go to school and a bunch of other stuff. Sometimes I am tired, I get some muscle aches but I take it over the alternative. Once you get your disease under control a healthy life style will help you deal with your side effects, but no lifestyle that does not include TKI drug is going to control your disease, you need to know this. the number one reason people have their CML progress is due to not taking their medication. Over time you will come to terms with this, it sucks, but in a sense we are lucky when you look at the cancer lottery in general.
When I first started this journey I had a day dream that I died and I was bargaining with death that I wasn't ready to die and I would do anything to get more time to be with my family. Death told me I could have a second chance, but I would have to take a pill everyday, it was going to make me feel like crap, but I could stay with my family and watch my kids grow up. I gladly stuck out my hand and took my pill. I look at it as sometimes we just have to do things we don't like to do to survive....
Best of luck
Posted 03 February 2012 - 05:29 PM
I wrote this long post and it didnt work GRR!! I have done nothing but cry! We were trying for a 3rd baby before all this. Breaks my heart that will never come to pass. I'm just hoping now I can see my girls grow and get married.
About the drug....so taking this may put a band aid on the problem but what are the end results? How bad will this drug affect my way of life as I have it now and once were in remission do you stop taking it? How often do you have BMB? I have my first next week and I'm scared out of my mind! Just these past few weeks of the waiting game I don't sleep much and have lost 10lbs and I'm already skinny! I feel hopeless!
I'm trying not to make a pitty party here,but I'm full of all kinds of questions, and feelings! Sick of people crying like I'm going to die and saying how sorry they are!
Never in my wildest dreams did I think at 30 this would happen!! I'm a stay at home mom and a family photographer! I'm at a loss guys. Thanks for letting me vent!
Posted 03 February 2012 - 05:33 PM
Very true! Do u mind me asking how long you have been taking this? What happens when you go in remission?
Posted 03 February 2012 - 06:08 PM
Depending on how you respond to the medication, you may only have 1 or 2 BMB. I have only had 2. I was diagnoised in December of 2007 and gained CMR within 8 months. You will probably have either weekly or monthly blood draws to monitor how you are responding to treatment. When having a BMB you can request a sedative which helps alot. As far as taking the medication, you will probably have to take it for the rest of your life. The good news is, the side effects deminish over time. Then they will come and go in a mild form. Only two things have stuck with me as far as side effects. The big "D" and fatigue. Both come and go in waves. All the other sympoms are gone and have been gone for years. The medication is not a cure, it just keeps the CML at bay. There are some studies going on with people trying to eliminate taking the medication but they are all still in trial form. About the weight loss. Believe me the weight comes back and then some (unfortunately). I lost 15 lbs then gained back 25 not happy about that.
Everything will get better over time. It takes time to work through everything. Just work with your doctors and try to eliminate as much stress as possible.
Posted 03 February 2012 - 06:28 PM
Glad you found this site. I also live in Houston (Meyerland area) and go to MD Anderson. I've been on Tasigna since April of 2011 and have responded very well. MD Anderson sees hundreds of patients with CML so they know how to handle it and what to watch for. My physical side effects have been minimal and there are only a few common internal side effects that they just monitor via my CBC. Otherwise I am living a normal life. Hope that helps.
Posted 03 February 2012 - 07:49 PM
Hi Shara: Let me just add a little bit more to what I already said , due to your questions. Once you start on your TKI, you will be monitored with your blood work. All your numbers will start to come down working to where you should be.
I do not want to confuse you before you go see your doctor at MD Anderson. He should be able to explain everything to you in terms you understand, and if he does not then just ask again and again until you know what to expect.
Basically you go through stages in your blood work until you get to a point were you no longer need the BMB, and they just test you through regular blood tests. You will always be tested even when you have a Major Molecular Response, and thats where they cannot see any cancer cells at all through a blood test called a PCR. I have now been getting just a PCR test for the past 10 years. I get routine blood work every 3 months, and then every 6 months they do the regular blood test with the PCR test. There has been no cancer cells seen for this whole time now, and also when you get to that point your safe with no chance of the disease progressing in most cases.
I feel for you believe me. Its too much to absorb all at once. Just think about all the responses your getting,and we are all telling you the same thing, because its all true. These TKI drugs were a miracle in the treatment of CML
Gleevec was the first TKI drug that came out. I did the clinical trial for it back in 2000, and it was called the Magic Bullet back then. It started killing those cancer cells immediately.
You are going to enjoy a full life, and most likely get the chance to have another baby. A lot of our younger CML patients have done exactly that. Like I said I do not want to get into too much detail. Try to enjoy the weekend with your family. Crazy as it sounds, you have so much to be Thankful For.
There are side effects. Everything comes with a price, but they get better with time. Not everyone has the same side effects either. I actually ended up with curly hair for the first time in my life. Never had any type of hair loss or anything like that. I have done very well as you can see because its been so many years, and I still take my pill every morning with breakfast. I had some nausea in the beginning because if I was not hungry I was eating a light breakfast of toast and coffee. It was not enough to absorb the medication. You learn as you go what works best for you. I started to eat better, and it solved the nausea issue.
Let us know what you learn when you have your appointment, and then you will probably have more questions that need to be answered by people who are on the same treatment you will be on.
Posted 03 February 2012 - 08:34 PM
I have been on Gleevec for about 19 months (my two year is in July).
As you learn some more about CML you will find that many of the "traditional" ideas you have about cancer will not apply. We tend to think of cancer as this disease that people get, they fight it, some win and go on with their lives and others lose the fight. They have something that needs to be cut out or obliterated. People also get particularly scared of the word leukemia, because the more common forms of leukemia are the acute forms which have less favorable outcomes. People aren't that familiar with CML, it is pretty rare. Leukemia is rare in general and CML is like the rarest of the four main sub-types, only about 5000 cases will be diagnosed in the US each year (now you know why I feel like I am lucky!).
With CML we don't talk in terms of remission, there really is no remission with CML, instead we have treatment milestones that we need to achieve. Each milestone gets you to a better state, which in turn increases your odds of progression free survival.
When you start your medication, the first thing they will look for is your blood counts to go back to normal, this means the drug is working and your risk has gone down for any health issues related to your blood counts being too high. This usually happens within the first 3 months or so. After that they look for something called a complete cytogenetic response. I'm not sure how much they told you about CML so far, you can learn a lot from Trey's blog on this site, but in a nut shell our disease is caused by something called a translocation between two chromosomes (9,22). Part of one breaks off and attaches to the other and forms a new chromosome, known as the Philadelphia chromosome (PH+). This new chromosome causes the body to produce a cancerous gene known as BCR-ABL. BCR-ABL causes the body to produce too many white blood cells, kind of like a light switch stuck in the on position. Gleevec and the other TKI drugs block the BCR-ABL gene so it doesn't proliferate. After a while they will not be able to find the PH+ Chromosome in your test results. The two tests that look for this are the bone marrow aspiration or a FISH test which can be done on peripheral blood. Bone marrow biopsy should be done at diagnosis, depending on how well you respond will determine if you need to have more, I had two, I think most people have around 2 or 3 in general. They are not pleasant, but they are not horrific either, you can also be sedated if you really want. Once they can no longer find the PH+ chromosome in your blood you are in complete cytogenetic response and at this point, your long term survival is pretty good as long as you stay in this status. The next test is the PCR test which actually looks for that BCR-ABL gene, it is much more sensitive, but also somewhat less accurate when it gets down to real low levels of disease. The standard for PCR is to get a three log reduction from the baseline (think decimal points moving to the left). The thing to keep in mind with PCR is that many labs are not on a standard measure so you can't match your results to someone else or to another lab.
When you get to a three log reduction this is considered a major molecular response (MMR) and this is where you want to be. Some people will get to the point where their PCR comes back negative or undetectable, we refer to this as PCRu, it is a wonderful feeling but we have to keep in mind that the PCR test is not sensitive enough to track every cell so even at PCRu there is still likely some leukemia cells in the body. And there lies our issue. Even though TKI drugs are extremely effective at controlling CML, they are unable to kill the CML stem cells, therefore they do not cure us of the disease. For this reason we must stay on the drug for the rest of our lives. Most people who stop taking the drug will relapse. There are some trials going on to see if people can stop after they have been on the drug for a long time but as of today, the long term plan is to stay on the drug. Many advances have been made in CML and the fundamental fact is that it is a relatively simple disease with a single cause being the PH+ chromosome. It is realistic to believe we will see a cure for this disease in our lifetime, but for now we need to make peace with the fact we are on the drugs for the foreseeable future.
Nothing is written in stone with regard to your future, women with CML have had healthy babies and you may decide that is something you still want in a year or two when things settle down, or you may decide like I did that I wanted to put my focus into the two children I had and move on to the next stage of our family life (vacations are easier now that the kids are out of diapers and not napping)
Careful talking to people about your illness, very few will understand. Right now they think you are going to die, after a while they will wonder why you are still around and before you know it they'll be telling you how lucky you are and it really is no big deal. You will have mixed feelings about these people - lol.
If you take the words leukemia and cancer out of the equation you can break this down to something much less scary. At times I have chosen to explain it like this - "I have a blood disorder where my body makes too many white blood cells, fortunately there is a drug that keeps my body from doing this and as long as I take the med, I'm fine." I didn't say anything that was not 100% true, but when I leave out the words leukemia and cancer it just doesn't seem as scary.
I really hated when my brother would compare my CML to diabetes, as if diabetes is some walk in the park. But in general we don't think of someone with diabetes or hyper tension as someone who's death is imminent, we see them as someone who is sick and needs to take care of their health problem. Some have complications and most do alright. We have a lot more in common with people who have these types of illnesses them someone with Breast cancer or even an acute form of leukemia.
No doubt about it, you got the poop end of the stick, but it will very likely be alright. You will see this in time and while you will always wish this didn't happen to you, there will be things in your life that you will experience and things in your life that you will see differently due to your situation that you would not have experienced had it not been for this and some of it won't be bad, in fact some of it will be nice. For starters, you're already making some new friends.
Now I have to go because my 5 year old just dumped a cup of water on the couch...
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