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#21 CallMeLucky

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Posted 18 October 2011 - 09:25 AM

I'm trying hard not to plant seeds of doubt in your head, but I find it interesting that your lead doctor appears to be a transplant specialist.  It kind of makes sense now with the comments about your immune system bottoming out and such.  That is what you would expect with a transplant patient.  He may be a good doctor but it puts you in a position that you have to consider.  If your knee hurts and you go to an orthopedic surgeon, don't be surprised when he says you need knee surgery.  He's a surgeon, that's what he does.  Likewise when you see a transplant doctor, it seems there is a tendency to move towards transplant.  It's what they know and therefore how they treat.  I do think it is in your best interest to get a consultation with a CML specialist just to get some things cleared up.  If you are up for the travel, you can come up to NYC and get an appointment at Memorial Sloan Kettering.  MSKCC is an excellent cancer center with CML specialists.  A little closer to home might be University of Pennsylvania or Fox Chase, both I believe have CML specialists on staff.  You may want to start a new thread on the board and ask in the title if anyone knows a good specialist in your area.

I noticed you mentioned your spleen was not enlarged, which would also seem to be less common if you were in accelerated phase.

For your information there are various definitions of Accelerated Phase according to NCCN guidelines.  The one that jumped out at me in relation to your situation is under the International Bone Marrow Transplant Registry Criteria.  There is a bullet point that says "Anemia or thrombocytopenia unresponsive to hydroxyurea or busulfan".  You said your platelets are very high (thrombocytopenia) and the hydroxyurea hasn't brought them down.  So that is a characteristic of accelerated phase.  But, it is only one characteristic.  There are four different criteria definitions.  The common factors in all of them are blasts 5% - 20%, Basophils > 20%, evidence of clonal evolution in bone marrow.  There are other factors as well and high platelets is definitely one of them, but until you know the blasts and all the other info you can't be sure of the phase.  Given your platelets are so high does appear to put you at a higher risk, so either way you should likely find a hematologist/oncologist with experience treating CML.

Best of luck, I hope I haven't made the wheels in your head hurt.  I am certainly not a doctor, I am only relaying the information I have read and sharing with you what I would do as a fellow patient.  You just want to get settled at the beginning so you can get going with your treatment and get on with your life, you don't want to be running around second guessing everything and waiting for the floor to fall out.

AP.jpg


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#22 Tedsey

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Posted 18 October 2011 - 11:34 AM

Dear Pam,

I just saw your post.  I have to get my 4 yr old off to pre-school (it is always a struggle because doesn't want to separate from mommy--I so understand what you write about being confined to the hospital---I was whisked away and diagnosed just days after his 3rd birthday; he has a lot of separation anxiety and still won't go to the toilet as a result).  I didn't get the chance to read through all the posts here.  My thoughts and best wishes are with you.  I hope you will find comfort and support in us.  I am here to listen.  I totally understand what you mean about fearing for the well-being and survival of your child.

Please take care,

Tedsey  



#23 pammartin

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Posted 18 October 2011 - 02:19 PM

Hi,

Thank you for your response.  I suppose at this point you know I am basically reading Greek looking at the information, but I am hoping it will clear as fog goes away and I begin to understand more.  I did receive some results today, am going to post them so everyone can take a look at them.

Each doctor I go to, and even today on the phone, states my case is rare, and the numbers and results do not add up like most patients with CML.  I was driving down the road and lost signal or I would have asked for clarification.

I have been looking for a CML specialist, but so far I am not finding one, thank you for the information.  I don't mind travel, and posting a new thread is a great idea.  I requested detailed information about my tests so I can post it all on here, but now I will begin a new thread with the results I have.  A visit on Thursday will hopefully provide more answers I

I understand what you are saying about a doctor, like you said each one specializes in their own field and that is where they tend to lean when treating someone.  Perhaps he already has me in the transplant mode in his head.

Turning the wheels in my head is a good thing!  I appreciate your post, and especially your last comment, that is how I have felt the past two weeks since this journey began, and it has not got much better until I found this site.  Second guessing everything and thinking I might not be here very long is not productive for anyone.  Some time I will share a story about my mom, my dad's cancer doctor, and how he approached her continuing question of how long my dad had left.  Is a bit crude, but he sure put things into prospective for her .

Off to post what results I have, thanks again!

Pam



#24 Susan61

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Posted 18 October 2011 - 04:40 PM

Hi Lucky:  What you said is so true, and I did not think of it until you mentioned Transplant Doctor.  When my Interferon was not working, and Gleevec was just coming out in trial I was sent to Dr. Goldberg In Hackensack.  They were all over me with testing etc. etc. and ready to set me up for the transplant.  I went to Dr. Strair in New Brunswick N.J. and he did the same thing.  I told my Oncologist that I was not rushing into anything yet, and I wanted to go to NY to be in the clinical trial at NY Presbyterian Hospital.  I saw Dr. Richard Silver, who is retired now.  He told me that he would not even consider a BMT without trying the Gleevec first.  So I went back and forth to New York for 7 months doing  the trial, but I am glad I did.

     I tell everyone to get second and third opinions before listening to the first doctor they see.   Pam said she did not mind doing any traveling, therefore, seek out all alternatives before your final decision.  The other thing is make sure your with the right doctor to begin with.

Susan



#25 Fas

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Posted 22 October 2011 - 01:37 PM

Pam,

As a new member of this form I am overwhelmed with the knowledge of its members.  Others have spoken much more eloquently and knowledgeable about specific medical aspects than I could ever.  However, let me share the following - I found that one of the most challenging aspects of the CML diagnosis is getting the phase correct and identifying whether or not any mutations exist other than the Philadelphia chromosome.  As a resident of the city of the same name the irony of my getting this disease is not loss on me.  I knew Philly would get me back for the nasty things I have said about the city over the years.  Anyway, I was impatient and nervous while my oncologist took great pains to ensure the phase and mutations were correct before being treatment.  Today, I am very grateful for the attentiveness and his ability to learn to communicate in the way I needed him to convey information.  I think being a partner in your care is very important - question, question, question and then question some more.  I m a big believer in training my doctors to communicate in compassionate ways, albeit some already have this skill, if your doctor does not - start the training!

It is so overwhelming being newly diagnosed.  I encourage to you to ask others in your life to filter some of the vast information out there.  I delve right into it all too when I was first diagnosed and got very unnerved, very quickly because I compared my situations and numbers to others, and if they were not doing well I was pretty bumped.  It focused my energy too much on the illness and not on the process of recovery.  I assume you wanting to rewind may have been associated with info overload.  Take one step at a time and the first is to ensure that you are getting the most accurate and correct diagnoses of disease and stage.   

You share your story with such grace and good humor, and both will suit you well as you continue on this journey.  Let me share with you that when I was diagnosed with CML, Gleevec was being touted as the new miracle drug for CML patients.  At first my platelets were stable and then began to go down.  After about a year or so my platelets, as well as most of my red and white blood cells stabilized.  Believe me there were peaks and valleys during the journey and it was not as simple as I have recounted it.  When I was first diagnosed I was so overwhelmed my only hope was I would to live to see my first wedding anniversary.  Next month, we will celebrate our 10th anniversary.

Keep the faith, may many blessings come your way,

Fran



#26 pammartin

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Posted 22 October 2011 - 04:33 PM

Hi Fran,

Thank you for the kind reply.   I admit I am worried about the diagnosis, and why it was in the accelerated stage when most of the information tells a different story.  Happy early Anniversary!  I went a bit further, told the doctor he had to keep me going till the spring of 2014, that is the year my son graduates.  This week has been difficult, the Sprycel may be working, but as another supported noted, the first days it seems railroad spikes are being driven in your head, I was there until today.  Although I have a headache, it is manageable, and a small price to pay if I continue to see results and become healthy again.  Although my family and friends are contstantly supportive, the people on this site not only understand the distress, they get all the other stuff that goes with it.

I found this site late Sunday night, while trying to do a homework assignment (psychology major, at almost 50 am still trying to figure out what I want to be when I grow up) and all I could do was shed tears.  I found this site, posted and started reading information from real people, people who 'get it'.

If this was a perfect world we would not need these sites, but because it is not, I am sure glad we have this one, for people with the CML diagnosis, and the family and friends who are supporting them.  Thanks again!

Pam



#27 Fas

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Posted 22 October 2011 - 08:25 PM

Pam,

Thank you for the anniversary wishes.  Now if I can just get my husband out of the house to celebrate I would be thrilled.  Early drug side effects can be the worst. I think mostly because you are waiting for them. I remember my fine beginning with Gleevec.  There is nothing to do but go through it.  Now, don't think me odd, or do - I don't care, but I am big fan of folk remedies.  You know the types of things our grand parents or great grandparents use to do to resolve things like headaches.  One day I was at my mother in law's house and I got the most splitting headache - no connection to my mother in law, I loved her.  She told me to lay my head back, got a potato out of the fridge and then began to place sliced potatoes across my forehead finishing by tightly tiding a bandana around my head to hold them in place.  I thought I was being punked.  Her explanation was that the potato drew out the pain.  I think the cold numbed it and gave me some relieve.  Regardless, it helped a great deal.  Got a potato?

So glad you found a place where you feel comfortable, supported and connected.  It is great to be communicating with people who "Get It" I agree!  I sometimes have a very visceral response to postings and although the site is very useful I feel a need to limit my access.  Even after so many years of living with CML and Gleevec other's experiences still impact me so strongly.  We all handle it in our way and as the journey continues, it changes and you move through iit in differnt way

.

Hang in there and keep us updated,

Fran



#28 Guest_billronm_*

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Posted 22 October 2011 - 09:49 PM

Dear Fran,

I like the old folk remedys I used to get leg cramps from Gleevac and I put a bar of soap at the foot of my bed and it does work. I'm always sticking bars of soap under my sheets the other ones slide around so I just put a new one in they also help with rls that was driving me nuts. One time my hubby was looking for something under the bed I don't know what there isn't anything there except dust.He found 7 bars of soap. I wondered what happened to those little buggers. Oh I wish I had known about the potato slices when I had my Sprycel headache.I would have had potato slices stuck in every orifice of my body. I will keep that in mind. Thank you for the info.  Billie



#29 pammartin

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Posted 22 October 2011 - 10:49 PM

Thanks!  The potato thingy I wll try tomorrow, after I take the pill at five, in about 3 hours I will be ill.  I did get out and about today.  That was fun!  I hope your day was full of laughter also

Pam



#30 Fas

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Posted 23 October 2011 - 01:24 AM

Billie,

OMG!  You cracked me up recounting hubby's discovery of the 7 bars of soap under the bed.  Thank you for bring tears of laughter to my eyes, and also for another great folk remedy.  I get bone and muscle cramps all the time from Gleevic and will deffinitely be placing the soap under my sheet tomorrow night..

Thanks so much,

Fran



#31 Fas

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Posted 23 October 2011 - 01:34 AM

Cool!  .  Let me know if it helps. I used to belong to a board where we  would exchange of lot of this kind of information.  I always find these options interesting and sometimes entertaining, as well.  If I can try a remedy that does not come with a prescription attach and is harmless, I am all over it.

Have a great and blessed day,

Fran






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