35 replies to this topic

[Tedsey]

Just one more thing, I have been quoted wrong numbers before!  Of course, I have memorized all my PCRs from my first deciferable one on.  Rely on the paper, not the mouth.

Hugs,

Teds

[Susan61]

Hi Pam:  Congratulations on your PCRU blood work.  It does not matter what we call it, and when I was told its undetectable was enough for me.  I always respond to whatever I can, but when everyone gets into the big numbers and explanations I get lost.  In my case, I do not feel like I have to know or break down every number to see all the Why's of this or that.  Now thats just me, and how I feel.  We have a lot of young people searching out everything they can to insure longevity for them without getting a BMT. They want to see a cure in their lifetime, which is understandable. I admire all their research into every possibility, and I hope they find the answer.

     A lot are looking to cut down their doses on their medications, and that is something  I want to talk to my doctor about.  I have been on my 400 mg. dose of Gleevec since day 1 of starting a TKI, and I guess with me I was just so amazed at my good response and then getting a reading of 0.000 now for 9 years on my PCR testing that I just never thought of changing meds or dose.  I feel very blessed as I have said many times, and I just keep doing what I am doing. I would not want to ruin a good thing by taking chances of losing my response, or possibly the Gleevec not doing its job if I play around with my dosing.  Maybe because I do not understand the process like many others do.

   Scuba tells me for the past year now that I have been cured, and do not even know it.  I love his determination to figure out how to be cured without the TKI's, and his use of Curcumin to beat his CML.

   I follow along with all that is going on, but I am still afraid to play around with what has been a miracle for me.

  Maybe I have just gotten use to all the side effects as part of my life, or it could be that mine are not as bad as some others are having. My plate is so full with other problems, and it has just put my CML as last on my list for now.

  I just love to celebrate right along with anyone who posts their great news.  Its a Fantastic Feeling when you get those good results.  Be Happy!!!

[pammartin]

Pamsouth,

I chose to try the Ritalin and it has been working very well.  What I am learning is if I am in the middle of a TKI slow down or brain fog, it doesn't work as well, is like the Ritalin is trying to get me moving by my body fights against the attempts.  I do not take it every day and some days I take only 1 dose, other days when I am feeling really well I take up to 3 doses.  I have to admit I am not overly concerned about the Ritalin in my system, my son used to take it so I am familiar with the drug, but Ritalin is also in and out of the body within about 5 hours.  There is no build up or time for the med to work, it either does or it does not.  On the days I am doing ok, it gives me the energy to keep moving and I have to admit I am particularly fond of those days.  I love the idea I can play with the dosage and not worry about having to take it for it to work properly.  I have been staying away from it on the weekends, my family is all home then and I have help to keep things up if I can't get going.  I am convinced my current doc will not agree to a lower dose of Sprycel in time, he does not seem up to date on current trends and medications, he still tells me high platelets and lower white counts are almost unheard of in CML but I have read posts from several people here who had the same and I have spoken with one person who had a similar start, so he is wrapped up in transplants and that's ok, just not where I wish to be led, even if I begin to have difficulties.  I am beginning a search for a new doc, one that will be open to suggestions and in time perhaps lower my med.  As you stated, a lower dose equals less effects.  I have to be patient for now, but I will be looking toward the future and what choices I have, quality of life seems to be more important to me than quantity of life, never knew that until I started this CML journey.

[pammartin]

Thanks Susan, Pin, & Tedsey, if you would have been watching me yesterday it would have looked like I really did loose my marbles.  I opened the letter, backed the car up a quarter mile, into the driveway, ran in the house listened to the answering machine again, read the PCR test again, listened to the message one more time before accepting I had not heard wrong last Friday and I had reached undetectable.  (Of course all of this does not prove I have not lost my marbles, or I had many to loose in the first place)

[pamsouth]

PamSouth

Regarding your doc  "he still tells me high platelets and lower white counts are almost unheard of in CML"

Well I am one of them. I mentioned it at a LLS seminar and an onc have told me that I am not unique there are many others.  At diagnose I had 2 million platelets and only 21 thousand white cells.  When my white cells bottomed out at 1.7 my platelets were in normal range and have stayed in normal range. We have an acquaintance friend who had 1 million platelets. he takes hydrea for the high platelets only. He said the doctor told him if he doesn't take the hydrea it would go into Leukemia.  That really throw me off trying to figure out how his platelets would go into Leukemia.  I mean the Leukemia starts at the top of the genealogy stem cell chart.  I am thinking maybe he has a stem cell that does not have leukemia transcript error, but has he has a stem cell that perhaps has a different kind error. I don't know, it's over my head.  Maybe if I keep doing some research I will figure it out.  I did met a gal at physical therapy who works with a pathologist, we had an interesting discussion, get the impression she is pretty much on board with the way I think she just has to be careful what she says, you know how that goes.  But she did say she and the pathologist do question what is up with some of the doctors and scratch their heads.  She said she started out in pathology with one belief but sense has changed her view on many things. 

Pam weren't you going to a cancer center close to Tampa, that was suppose to be a noted cancer center?

I had 2 massage today.  Got a coupon in the mail today at a new place in town.  It is really cool.  I was able to get in this evening and I had a one hour facial it was divine.  Then I went to the chinese foot massage and had a hour massage there, I fell asleep.  The first place (new spa) I went to just opened last Dec.  It is a huge place.  I signed a year contract.  You offer different therapeutic stuff and give you some free bees. I will have to read thru the literature.  It is $49.00 a month and if you miss a massage or whatever you chose want, you can carry it over to the next month. 

I am thinking about going back to school again.  My left arm and hand are not in pain anymore.  I have being to physical therapy for a couple of months, my left hand just needs to get a little stronger.  Anyhow if I went to school for Facials I wouldn't have to use my hands and arms so much, like you do for deep tissue massage.  It is more of an art of different kind of cleansers and hot towels and massage mainly the face.  While the hot towel is on your face she does massage the upper shoulder, arms, hands. I have 1 room in the front of the house set up as a massage room, it is really nice.  I bought a beautiful picture, of course the massage table, blanket warmer, pretty sheets, lovely scots candles, flowers, water fall, music, etc. I like to do my husband upper body, his back, shoulders, arms, neck and head.  He seems to enjoy, it doesn't complain about the money I spent.

He is a retired electrician from Chrysler but works part at Meijer as a greeter.  He really like it.  He is losing a little of his memory so it keeps him on his feet and socialize a bit.  Also keeps his weight and sugar down. 

  We bought two 8 x 10 throw rugs for the office, got to take everything out and paint the walls first, and steam the floors, before we put the rugs down. Going to roll up the old rugs and throw them out.  We have hard wood floors and had some left over carpet renement we had used in there, there not worth saving, they are pretty dirty, just going to pitch them. Oh dear I got some many boxes of books and files, and paper I need to organzie and perhaps pitch some stuff.

Time for my husband to get off work. Need to sign off.  Talk to you tomorrow. GN

Pamsouth

[pammartin]

Thanks Billie,

But I bet you are celebrating with a bottle........why bother with the glass?

[pammartin]

Pamsouth,

My platelets were a few shy of 2 million and my white count was never higher than 16.  This is why I am looking for other options, this doc focuses on transplants, and that is fine for the people who need them, but from the beginning I have not been in that position.  No, never Tampa, I live in Pennsylvania, and I go to West Penn in Pittsburgh.

[pammartin]

Hey Billie,

I am in a slow phase myself. I think I should be running the sweeper, doing laundry, and dusting, but I find the couch much more appealing.  I am waiting for my second wind to kick in.  or maybe it's my twenty seventh wind, who the heck can keep track?

[Judy2]

Hi Billie,

Please let us know as soon as you get your blood test results back. I so hope you can go down to 50mg Sprycel. Also, is there any way your doc. can adjust your bp medicine? Is there another bp medicine you can try or have you gone through them all? As for me, I sleep standing up, too tired to make and unmake my bed. Hope Ron gets a lot of painting done today and you are sitting back in a chair eating bonbons as you watch him work.

Hugs,

Judy

[pamsouth]

Billie,

A year ago the doc had to adjust my Blood pressure med's, The old BR med's had worked for better then 10 years but then my heart beat got, extremely out of rhythm, up and down. So I went on the new Bl Med Metoprolol, it did fix the irregular heart beat, but I was sleeping all the time. Well still have one but it is much controlled.  So he told me to take the BL Pill at night and not during the day.  I have been doing that and it does seem to help so I am not so tired during the day, but sometimes I think the blood pressure gets a little to low at night. So many nights I start out sleeping in my comfy recliner and then transfer to the bed.  Hard to fine tune the med's.

Then again you talk about that wine??

PamSouth

[Judy2]

Hi Billie,

I sent you a personal email.

Hugs,

Judy

[Susan61]

Hi Billie:  I have missed so many postings.  I try to answer what I can when I can, but I see your having trouble with BP meds. I went through that for years.  I would start a new pill, and actually pass out walking down my hallway to the bedroom.  What do they have you on?  There are so many new ones out now., and I am not familiar with them.   I have been on Benicar and Toprol now for awhile, and as long as I do not eat things to boost the BP I am doing okay.

     Whatever your taking in drugs, you sound like the white tornado commercial  with all the cleaning.   I cannot remember what they were selling then.  I was like that last week, and now this week I am so fatigued and just barely getting the main things done.  Hope you get stabilized with it all.  I know how frustrating it can get.