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Recently Diagnosed with CML


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#1 Johnmontoya923

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Posted 22 July 2012 - 06:49 PM

Hello everybody,

Just like some of you, I was recently Dx. with CML. My whole life changed in matter of hours after doing a blood work up. My symptoms were bruising with large bumps on my skin. My wife works @ the hospital where we did my blood work, so she had access to my results right away. She called crying and I knew something was wrong and had an idea about what she was about to say. So I held my breath while she cryed and then she began telling that most likely I have cancer. My white blood count was over 359000. We didn't know what kind at that time, we just knew something wasn't right. The lab results said that I had cancer cells floating in my blood and spreading. We had a call from a oncologist soon affter all that, they said we needed to go in right away, and the next thing we knew, I was laying on a table with my ass hanging out and getting a thick needle drilled in my bones. I cryed and cryed really loud while I held my wifes hand, she too was crying with me so much that a nurse had to come in and console her. I will never forget that moment. Next I was given a high dose of oral chemo- therapy to bring my WBC down. It worked, but as some of you guys know, there were some side effects that came along with it. I was bed ridden for two week, fever, mouth sores, N/V, ect....... I then was switched to sprycel, I think i had a worse reaction to sprycel than the Hydrea that I was on. I felt my head wanting to explode, vomiting all night with major night sweats plus more.....

Talk about wanting to die, I really did at that moment. I saw myself blowing my head with my 9mm, but I could not do it. Leaving my wife and kids was not an option, I love them so so much! We are now a closer family from all that has happened. Its really strange how things work out. I still have side effects from the sprycel, but everybody says it should get better as days go by. I dont understand how i can take chemo the rest of my life, when that damn bag says," Caution Chemo therapy Agents, with a Bio Hazard sign on it. It doen't make any sense to me, I have issues taking it every night. My only worry now is my caregiver, who, is my wife. She is the strong hold of the family, she struggles with many things. We laugh and say things like," she is going to write a book on how she survived Autism, down-syndrome and leukemia. Yes, its true, my son has Autism, my daughter down-syndrome and I, Leukemia. Wow! Lots on her plate. Does anyone have words of wisdom for my wife?



#2 cam_kris

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Posted 24 July 2012 - 05:26 PM

Hi John!

I too was just dx on March 26.  I know all about the crying and the emotions that go along with all of this!! at the highest point my wbc were 210,000 I was rushed to the hospital but after the bone marrow the next day i was released. I so know what you are talking about, all the emotions a person goes through, not only us as patients but our husbands, wifes they go through it as bad as we do.  it was like getting hit by a baseball bat!  but with the grace of god, and good meds, i am doing very well.  I only had one side effect which was a full body rash.  not fun, but that has been it, i feel very very fortunate.  I am on Tasgina 600mg a day, 2 at 4pm and 2 at 4am.  Monday i go to my onc to see what my bone marrow is doing, I  pray it is going down, my cancer % in my bone marrow was 95% and have to get it down to .01 %  Long ways to go, but if it is going the right way I am very happy !!!  One thing I have learned on this site is that we are not alone, and everyone tells me that if we have to have cancer this is the cancer to have.  I know upon my dx they thought i had ALL, I prayed all night to have CML and after 8 long days, my prayers were answered.   Hard to believe I was praying for cml, but i sure did!  they are telling me that cml has the most (not cureable) but containable cancer to live a very long and good life, that is wonderful news!! I am a 54 old women that owns a bar and grill, since my dx i just do the books now and enjoy life. this dx has changed my entire life.  Sounds like not only your wife has alot on her plate as you do too.  you will be around for a long time to help her with your children, reasure her of that.  that is the best wisdom i can think of.  we do not have a death sentence, just a little curve in the road.  Take care!!



#3 sharcare

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Posted 25 July 2012 - 05:20 PM

John, I was just dx on July 6th, 2012.  I will be starting Sprycel as soon as it arrives at my door (3-4 days).  I'm confused, I was told this is not chemo but you say u don't know how u can take chemo the rest of ur life.  R u JUST taking Sprycel or something else also.  Have I misunderstood that Sprycel is NOT chemo?

This is all new to me!  I went for a well visit yearly physical and was called the next day and told to get othe ER. My wbc was 134,000

They waited a week to do a bone marrow biopsy and I went for a 2nd opinion today (the 25th).  This doctor had the same to say as the first but I liked the WAY he said it better! lol

God Bless you and your family, Sharon



#4 Trey

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Posted 25 July 2012 - 05:37 PM

Welcome.  You might want to read this first:

http://community.lls.org/thread/2600

Previous TKI drug vs chemo discussion:

http://community.lls.../message/137037

Hope all goes well. 



#5 Happycat

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Posted 26 July 2012 - 04:22 AM

Hi, John and Charlene,

John, I posted to you on your Mayo clinic post, since I came across that first. I will add this. When I was given my preliminary dx, I was told if it was what they thought it was, they had to start treating me really aggressively, because if not, it could kill me in days. Then the hematologist said he was sending me in to Boston and he only sent maybe a handful of people to Boston each year. (Gee, that made me feel loads better!). Then, at the hospital in Boston, I caught the hem-oncs nurse blinking tears out of her eyes at one point. That's when I knew I was in deep doo-doo. I later learned they thought I was in something called DIC, which apparently kills a lot of people with APML. So you can imagine how relieved I felt when I heard I had CML instead.

Charlene, I am impressed you handle the care of your family with all their special needs, AND you work as a nurse, too!  Full-time as well, or part time?  Nursing is a hard profession, but has likely prepared you well to handle all you do at home. I am 45, married with 3 kids (11, 9, and 9), and also work FT as an R&D manager for a production group. (We make research quantities of drugs and drug-like compounds for life science researchers.). My kids do not have the problems that yours have, but my eldest suffers from migraines, which has been pretty refractory, doesn't respond much to treatment. Recently, one of my twins was dx'd with eosinophilic esophagitis, which has been triggered by hidden food allergies. Right now, she has so many appts, it is hard to keep them straight. I have had to learn to cook without dairy and eggs (well, still learning, good thing I'm a chemist,  I'm keeping track of my foodie experiments!).  We are still struggling to get it under control, as she is not gaining weight and actually lost a little this past month. Thankfully, my third dd has no health issues, but she does have her own psychological issues. "Mom cares more about my sisters because she is always doing stuff for them. They are better at math than I am, I'm stupid" - stuff like that. Anyway, I understand the need to juggle everyone's needs. My CML is in a good place, so I have plenty of energy to deal with it all. Thankfully, my dh is a lot of help, too. He can't cook and he sucks at nurturing or doctor's visits, but he pretty much takes care of the house, for which I am grateful!  With all the doctor appts and sick kids, I've had to work lots of nights and weekends to make up my time. My employer has been pretty flexible about it all, thankfully. However, my boss is retiring and I get a new one next month, so I hope he will be as reasonable. Anyway, just wanted to let you know I recognize the struggles and juggling act you've got to do as an employee and caretaker for your family.

My best to you and John both,

Traci



#6 Johnmontoya923

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Posted 26 July 2012 - 12:52 PM

Cam_kris,

Thank you so much for those kind words, it really does help when you know your not the only one out there who is feeling or going through the same thing.

Blessing to you and your family,

Ps I love bar and grills, always wanted to own my own. I make a killer green chile burger and IPA



#7 Johnmontoya923

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Posted 26 July 2012 - 01:05 PM

Hi Sharon,

I am in the same boat as you. Thank you for your message. As you read the other post, you'll find out other cml friends have there view on what it really is.

Just got my second opinion yesterday, you can read my new thread, its called " my experience at the mayo clinic" if you want.

Im only taking Sprycel plus other natual supplments. What really bothered me was when I waited for my first bottle of Sprycel, it came in a bio-hazard bag, saying, Caution, Chemo-Therapy Material, thats what freaked me out.

Please right back and let me know how your doing, Your CML friends are here to help and answer any of your questions,

Blessings to you and family

jon



#8 Johnmontoya923

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Posted 26 July 2012 - 01:45 PM

Hi Traci, John's wife, Charlene here. thank you so much for your kind words. Life is definatly an adventure, isn't it? Technically, I am a respiratory therapist. But it has prepared me for everything we have been going through. I also have my Masters degree in Chinese Medicine, like my husband. We met while I was going to school, he was my teacher. I am the expert researcher in the family. I will leave no stone unturned. My son, Johnanthony, is autistic and I have researched so much, I think I am an expert on autism. And our daughter, Sadie, has down syndrome and I believe she may also be autistic. I think in time John's CML will be the least of my worries. At least I hope it will.

I feel your pain with the diet restrictions. I try to keep the whole family gluten free and I am contemplating going dairy free. My son can't have gluten, He reacts to it like I gave him a pot of coffee to drink and kids with DS are prone to celiac disease,so I keep sadie gluten free to try and stave off any future problems. Its just easier to keep the whole family gluten free than try to cook different things for different people.

John has been struggling so much with his diagnosis. He is a natural practitioner, being forced to turn to western medicine is hard for him. But he is coming around.

I am so happy we found this group. It is really helping John come to terms with his diagnosis. He needed to hear what others are going through. He felt very alone.

I have kids hanging on me while I type, gotta run. thank you again for everything. Chat more soon!

Charlene Montoya



#9 DancingRain

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Posted 26 July 2012 - 04:56 PM

A new diagnosis is always hard. Jon will get thru this. I've had CML for almost 5 years. I started with Gleevec and went to Tasigna last year. I am in remission now, no detection whatsoever. What I do have is, as a result of the chemo is a weakened adrenal system and a rash all over my body. Here's the cool thing....I am doing TCM for the rash and boosting the immune system. It is working, I hope it continue he's. I am hopeful! There is room for the TCM in his treatment. Just give it some time after his body adjusts to the chemo. If he has any cramping, magnesium corked (slow mag) or magnesium glycinate works. As a nurse, I've researched so much on the treatment for CML and believe somewhere down the road I will be as to come off the chemo.

Hang in there! You have hope! That is something no one can take away from you!

Angie H.



#10 Happycat

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Posted 26 July 2012 - 05:37 PM

Charlene,

Ah, I see now why the TKIs are hard for him to take. It would indeed be difficult as a naturopath to suddenly be told you MUST take this pill.

Although I am a chemist and pretty much live the better living through chemistry, I can certainly understand a reluctance to take a pill, rather than try to get the body's natural systems back in alignment. I've been avoiding blood pressure meds for about 2-3 yrs now, kept telling myself I got my blood pressure down naturally before so I can do it again. But I finally gave in and took the script. There's so much going on, it is hard to focus on what I need to do for my BP. However, I have vowed to my doctor that I'm getting off of it as soon as I can. I don't like taking too many drugs.

I considered taking my migraineur to a naturopath, since medicines didn't help much at all. We ended up doing acupressure. Found a great doc who is a pediatrician, anesthesiologist and acupuncturist.  It does help, but when one of her big triggers is present, there's not much we can do to stop it.

I've been hanging out in the allergy/special diet/cookbook sections of bookstores lately, trying to figure out how to cook DF and egg free. I did see a lot of books for autism and Downs kids, and noted the gluten free, dairy free connection. I agree with you, it's a heck of a lot easier cooking for the whole family, rather than different meals for everyone. My first project is to redo my tuna casserole. We can live without the cheese, but I need to replace the cream of mushroom soup. I did find dairy free mush soup, but it was soup, so too thin for the casserole. I guess no one sells in condensed unless it's got milk. Looks like I need to thicken it up myself.

Traci



#11 sharcare

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Posted 28 July 2012 - 12:47 AM

John, We have a friend who is a Nutritionist and I started on a protein and veggie(butter and olive oil) only diet.  He also put me on 3 supplements from Standard Process- Immuniplex for my immune system, Burdock Complex to kill cancer and Seseme Seed Oil that he says will kill Leukemia cells.  But my WBC count went up so I am going on the Sprycel too.  Did u try any holistic, natural forms of treatment before going on any meds?



#12 Sneezy12

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Posted 28 July 2012 - 01:05 PM

Your first paragraph answers your last question. This kind of "treatment" is complete, anecdotal, unscientific nonsense, which does irreparable harm to patients with real medical diseases.  Frank



#13 sharcare

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Posted 28 July 2012 - 02:38 PM

Frank, I have to respectively disagree.  I know people who have used only a Holistic approach for their cancer and r cancer free.  It does work for some!



#14 Susan61

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Posted 28 July 2012 - 04:04 PM

Hi Sharon:  Please take the Sprycel as directed, and if you feel like doing all this other treatment with Holistic approach than thats up to you.  I have seen people do this, and not take their medications.  They did not survive.

We are here to listen and help at anytime if you have any questions.  I do not know what type of cancer these people had that you are referring to, but I agree with Frank.  Be careful with what you take.  Some things can interfere with your TKI drug.

Susan



#15 sharcare

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Posted 28 July 2012 - 05:41 PM

Hi Susan, First what does TKI stand for?   Yes I brought the 3 supplements that the Nutritionist put me on w/ me to the dr.  None of them will interfere w/ the Sprycel.  They will help keep my immune system strong and fight off the cancer cells.  I know alot of people don't believe that nutrition and supplements works but I do, as I believe in the power of prayer, positive thinking and miracles!  The 3 people I know had Breast,lung and liver cancer (1 each) and my nutritionist has cured many.  I just don't trust it enough to give it a chance.  SO I'll do both traditional and untraditional.    Thanks for your responce.



#16 Susan61

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Posted 28 July 2012 - 06:46 PM

Hi Sharon;  Your Oncologist should have sat down and explained what he was giving you and how it works.  Apparently he did not mention that Sprycel like Gleevec and Tasigna which are other TKI drugs are what is being used to fight your cancer.  A TKI or Tyrosine Kinase Inhibitor which is why we say TKI is a Cancer Growth Blocker. As you take your Sprycel it will block the cancer cells from growing and multiplying, and if they cannot go anywhere because they are blocked off then they die off.  After awhile through more advanced testing they will not be able to find these cancer cells in your blood work anymore.  That is what you want to achieve by taking the Sprycel.  Sprycel has worked very well and fast on a lot of people in our group.  Do not try to absorb too much at once, but always ask your doctor everything.
That is why he is there.  We have more knowledgeable people on here who can go into more detail if you want them to.

I only know how to explain it in the simple terms like I just did.  It is not considered a Chemo Drug, as Chemo works differently.  Chemo can destroy good cells in your body along with the cancer cells.  The TKI drug targets only the cancer cells, and not your other organs. 

     The other thing is that I do have great Faith in the Lord, and I believe in miracles and power of prayer. I have seen it in my own life many times. I always have to remember that God works in his time not ours, and sometimes our prayers do not get answered as fast as we would like them to. I also believe that God works through others to help us like our doctors and all the people who have done the research to develop these TKI drugs through the years.

   When I was diagnosed in 1998, there were no TKI for me to take.  I did the only treatment available back then, and it did not work for me.  It just started to destroy my liver.  I had to wait until they started a Clinical Trial for Gleevec.

   There is so much you will learn as you go through your tests and see your doctor, and read all the posts on here from others who know exactly what your going through.

God Bless

Susan



#17 Happycat

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Posted 28 July 2012 - 07:21 PM

Sharon,

I'm a chemist and I have a different viewpoint than most. To me, whether it is naturally derived or synthetically derived, if it has biological activity, it's a drug.  (Frankly, everything is made of chemicals to me.  Everything going on in your body?  A bunch of chemistry, just with some really big molecules). So I'm glad you brought your supplements to your oncologist, to see if they might interfere. Definitely the prudent way to go.

A lot of synthetic drugs are actually derived from natural substances. Taxol was first isolated for the Pacific yew tree, I believe. Aspirin first came from willow bark. And there are plenty of deadly plant products out there, including amanita (?) mushrooms. Many, many drugs start off as ahit from some natural substance, and then they start doing chemistry to tweak the structure a bit and get a better binder or more potent drug. Our friend on the board Michael (scuba) takes curcumin along with his sprycel. (You might want to check out his posts on it.). I am now beginning to see curcumin derivatives cross my desk, so people are definitely trying to improve on it. (My company sells research compounds to life science researchers, and I usually end up reviewing a number of new products prior to launch.).

Anyway, to Frank's point, sometimes the natural stuff has some activity, just not enough. Or, worse, it has no activity at all, but because it's a "supplement", manufacturers do not have to support their claims like they would for a synthetic drug. So there can be stuff out there with no studies on effectiveness. Watch out for those.

Like Susan said, take your TKI, then add supplements if you want, but always let your onc know about it, as you have done.

Traci



#18 sharcare

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Posted 28 July 2012 - 08:48 PM

Hi Susan, My oncologist did explain all that to me just never called it a TKI!   Thanks for explaining

Shar



#19 mariebow

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Posted 28 July 2012 - 08:58 PM

Susan61, that is so true, it wasn't for the Lord, It would be hard for me to accept this, he has brought me out of many things also



#20 Susan61

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Posted 28 July 2012 - 09:01 PM

HI:  You will get to know all these things as you follow conversations also.  I think your going to do just fine, and the good thing is for some people that may not respond to one drug can always go on one of the others.

      So much is being done with CML, and I hope to be able to see the cure in my lifetime. 

      It's amazing how many new people have just joined us in the past 2 weeks. I remember when I was first diagnosed, and had joined a group I had no idea what to expect.  The biggest thing was being able to talk to people who truly knew what I was going through.  My family was so supportive, but they were not experiencing what I was.

You post something, and your sure to get an answer from somebody who probably had the same issue.

Susan






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