47 replies to this topic

[tbecki]

Jen, the 3rd week of July would work best for me.

[fawnc46574]

I just saw this post I live in Walkerton IN. and was diagnosed last year with CML I drive to Indy for all of my doctors though, I go to Indiana University hospital used to be clarion. I am on 400mg of Gleevec and am 29 years old. We will say the side affects have not been my friend through this, and would love to chat with some people that are close to home

[jenz]

Hello fawnc. 

I am glad you found this posting.  We had our first Indianapolis CML Connection meeting back in April in downtown Indianapolis where 5 CML patients showed up from around the city.  So overall a great turnout and hoping this one coming up is just as well in July.  My name is Jen and I was dx in November 2010 with CML, started out on Gleevec 400 MG and then just recently switched to Tasginga.  I am 27 years old and always love meeting new CML patients.  I would love to trade emails with you especially since we are similar in age and from the same area (basically).  My email is jenzcml@gmail.com  and I look forward to hearing from you.

Jen

[jenz]

All:

After receiving responses to my email from a few weeks back about our upcoming July meeting.   It was determined that weeknights work better than weekends.  So our next meeting will be Wednesday July 20th, at Potbelly Sandwich Shop starting at 6:00 PM.  The sandwich shop information is below but basically it is downtown right on the circle.  I will have new materials to pass out and door prizes..  I hope to see everyone there!  People who have already reached out to be in the past about attending meetings received this in email form.  But if you wish to be added to my Indiana email list then please email me at jzinkovich@nationalcmlsociety.org

Potbelly Sandwich Shop

55 Monument Circle

Indianapolis, IN 46204

Phone: 317-423-9043

[jenz]

All:

The invite has been setup and confirmed for July 20th at Potbellys Sandwich Shop (downtown on the circle) at 6 PM.  If you plan on attending would you please visit this link and RSVP for the event??? It is not required but will help with the planning efforts.  If you do not get around to RSVP'ing but still want to come just come...  Do not worry about it.

http://events.r20.co...9&llr=mzr548dab

Thanks!

Jen

[jenz]

Reminder,

This week is the Indianapolis CML connection meeting! This Wednesday, July 20th at 6 PM on the circle at Potbelly's Sandwich Shop.  If you haven't already done so please RSVP via this link.  Hope to see everyone there and of course anyone and everyone is welcome.  The RSVP is just to know how many to expect as far as tables go to sit together.

http://events.r20.co...9&llr=mzr548dab

Jen

[Beckster]

Hi, I'm Becky, I'm 28 years old, live in Carmel and was diagnosed with CML last month.  I found out last week that I have a mutation (presence of only P190) that significantly decreases my chances of responding to TKI's.  I'm currently going to IU Health for treatment (I also work for them as a supervisor on the A/R/contracting side of transplants) but have a consult being scheduled at Mayo Clinic in Rochester, MN due to the rarity of the mutation and the fact that I am considered high risk.  I'm on 600 mg of Gleevec and seem to be doing okay with it for now.  I'm still tired all the time and sometimes nauseous.  My WBC is just now back to normal after 3 weeks but my HGB and RBC are still low.  Does your spleen continue to be tender?  Do the night sweats go away?  Anything else I can look forward to?

I'm going to try my best to make the event on Wednesday and look forward to meeting everyone. 

Becky

[acb]

Becky,

Welcome to our group! Sorry to hear about your high risk status. You might want to start a new discussion thread with your info (about your mutation) and ask your questions there, so that everyone will see it. Trey gives excellent advice and always provides all newcomers with links to helpful information. My spleen stayed tender for quite a while and is still sore off and on (it cycles with other side effects or so it seems). I am on Sprycel though. I can't remember how long the night sweats lasted, but I think it is different for everyone. With the higher dose of Gleevec (standard is 400 mg), you may experience more side effects.

Good luck at Mayo -- hope you are able to find some answers. With your location, I believe there is a CML expert in Michigan that would be closer to you (not sure of his experience with your mutation though). Trey or others will hopefully give you more info about that.

I live in southern Indiana (close to Louisville KY), but my two roommates from college both live in Carmel. I was just there last weekend.

Aprill

[acb]

Jen,

Thanks for posting the reminder. I missed the first gathering because it was on my birthday (and my husband made other plans for us). I have to miss this one because of my daughter's birthday dinner with her aunts and uncles.

Hopefully I will make the next one!

Aprill

[jenz]

Becky,

It is unfortant to meet this way but you have came to the right place for information and support.  I am 27 and was dx last November, I also live on the North side of Indianapolis in Carmel (Just a little north of 146th street).  I am the one that runs the Indianapolis CML meetings so I really hope you are able to attend this Wednesday.  We should talk and compare notes, I started on Gleevec for about 6 months and then just recently switched to Tasigna.  I go to University of Chicago for medical treatment but recently found a CML specialist in Indianapolis I am going to go meet next week.   Email me if you'd like to talk or with questions:  jenzcml@gmail.com or I will just see you on Wednesday.

April, sorry you could not make it this week.  Hopefully soon you will be able to attend.  It will be nice to put a face with some of these names on here.  We will be having our next meeting on September 22nd, so definitely mark that on the calendar!!

Jen

[fawnc46574]

not going to make it I am going to be in Indy on Friday for an Eye doctor visit and can only afford gas so many times in one month to drive that far ( I have 3 trips this month). I will see if I can make the next one

[jenz]

Hi, Just wanted to let everyone know our next Indiana CML Connection meeting  will be on Saturday October 29th at 11:00 AM, at Potbellys Sandwich Shop (55 Monument Circle).

We will be discussing activities that were held during the month of September for Leukemia awareness among other topics.   Please let me know if you can attend!

I look forward to seeing everyone.

Jen

[jenz]

Reminder that this coming Saturday 10/29/11 at 11:30 we will be having a Indianapolis CML Connection meeting at Potbelly's Sandwich shop (55 Monument Circle).  I hope that anyone who is able to attend will.  If you know anyone who has CML that might not see this please let me know about the upcoming meeting. 

[pamsouth]

I was just wondering when you started on Gleevec and why you switched to Tasigna?  Seems a lot of people on the discussion board are being switched over to Tasigna from Gleevec. 

[pamsouth]

HI JSM,  was wondering the name of your doctor is at St Vincent.  I live in Greenwood IN just south of indy.  I was DX with CML in 2005 and have been on Gleevec.  My doctor has been on me for the last year to switch to Tasingna.  Have a number of reasons I don't want to switch. 

I noticed you said Tasingna was approved in 2010 when you husband went to a clinical trial at Beech Grove.  I called Medco pharmacy this past week and they said Tasingna became a patent in 2007.  Not sure about expiration.  I do know it is a more expensive drug then Gleevec and Gleevec patent will expire much sooner, make it a generic, less expensive drug.

I am a little concerned with my health insurance as they use to ship me a 90 day supply and now they will only ship you a 30 day supply right down to the wire, a day before your last pill.  When I talked to the Chyrsler UAW REP they are complaing about the expense of the drug.  Blue Cross of Michigan used to be handled by Chrysler however Chrysler filed a bankruptcy and Chrysler agreed to put so much money into an account called VEBA which is ran by the auto unions.  Chrysler came up short putting the amount of money in the account because of the bankruptcy.  Anyhow I was thinking that Gleevec patent is suppose to expire in 2013 or 2015 not sure, as Medco says they don't know and Novartis won't tell you.  But in any case it would certainly become cheaper as a generic drug.

My PCR was up this last week, but then the lab has changed to a different scale about a year ago.  I understand that a  PCR test can also have a lot of room for error when they are sent off to out of state labs.  MD Anderson Cancer of Houston Tx, does there own labs in house. 

To be switching to a new uncharted teritory  of a newer drug is not something I would want to do.  Gleevec research started 1997 and at least has a track record.  I believe 80% of the patients are still alive. That good enough for me.  In fact I would rather go on a larger dose of Gleevec then make a switch.  Doctor says the switch to Tasigna  will be a piece of cake.  Easy for her to say, but i have been told that before, wasn't very pleasant going on Gleevec, but have adjusted well to the drug.  Who knows what a person will go thru on a new drug as everyone is different.  Don't care to even think about new side effects or perhaps have more heart problems.  You have to take EKG before you start and after.  I already do an EKG every year.  It has been a stress full year for me and I am just not up to a new adventure.  Thought I was going to have to put my husband in nursing home last year, nephew and brotherlaw passed away this year.  My son Was in the hopital for 88 days and on life support for approximately 30 days.  He just got out of hospital a couple of weeks ago and still need my help.  Just don't think I can take on the stress of switching to another drug.

Anyhow was thinking of flying back down to MDAnderson Cancer of Houston TX, before making a drastic changing.  Also thinking of getting a second opionion here.  I have always heard good things about St Vincent so I was wondering who your Onc was at St Vincent.  Also wondering what you think of the switch from Gleevec to Tasingna.

At one time St Francis was offering a trial of 400mg vs 800 mg.  The ideal was if you have a faster log reduction in a certain time you would have less chance of the CML mutation, etc.

However a couple year later I read a report that since that trial came out it didn't make any difference as long as you get to a 3 or 4 log reduction. 

Also a few year ago I went to a seminar my a leading cancer doctor from IU, Dr. Cripe.  His statement has really stuck with me.  He said "in the old days we were taught to hit cancer patients hard and fast with chemo and many died from the chemo and not the cancer.  Dr Cripe also said the CLL you can weight a long time before taking medicine like 15 years or so and have 200,000 or more white cells as that was better then the nasty effects of the medicine.  Now my friend with CLL was with me and checked it out with her doctor and he disagreed and she choose to have more chemo.  I also noted that a few years later she got breast cancer.  At some of these seminars patients were complaining of 2,3, 4 different kind of cancer as one drug/s cause another cancer, then you take a drug for that cancer and that causes another cancer, so on and so forth.

Well those are just a few reason's I would prefer not to change and not to take large doses.  I sometimes wonder about all of these radiation, x-rays and MRI.  But then i guess what doesn't cause cancer among the air we breath, drinking water, and food.  So there you go. 

However I am 63 years old so I have lived most of my life.  But sometimes I think about the younger folks with families and the rising cost of health care and the job situation, where companies don't want to pay for health insurance.  I'm not sure anymore if our country is on the leading edge of health/care.

Sorry this was so long.  But I am finding it theraputic to vent.

Again if you could just drop me a line and let me know that Doctors name at St Vincent I would be greatfull!!

[pamsouth]

UPDATE JUST GOT MY NEW PCR LAB RESULTS BACK TODAY.  GOOD, GREAT, HAPPY CAMPER!  WILL BE STAYING ON GLEEVEC.  GLEEVEC HAS BEEN GOOD TO M!!

Praises to the LORD for answered prayer!! my PCR lab for leukemia came back good!!! There are 3 Genetics marker they check for; the lab last week was; b2a2 up to 23.45%, this week lab was NOT DETECTED, last week b3a2 up 23.45% this week only 12.12%, last week e1a2 NOT DETECTED. this week STILL NOT DETECTED.

I believe that still puts me at a 4 log reduction on 2 markers b2A2 & E1A2 and a 3 log reduction on b3a2.  I think Trey said to convert it from percentages to move the decimal over 2 places therefore the 12/12 % - .1212 and a 3 log reduction is 0.113.

I can't tell you how much i appreciate all the folks prayer and support. Just know that someone is praying, means everything. May God Bless His People with riches untold.  I find it is so easy to praise God with unspeakable joy when on the mountain tops, but when in the valley it drives me to my knees.  So I want to give thanks for this site to help relief my anxiety/vent and lean on your shoulders.  May God have Mercy on us and give us strength and joy in these uncharted territories.  May God give our Health Care Providers, that we entrust ourselves to, wisdom in all they do, and realize that we are humans, with unknown fears and complex disease, and please listen to us and let us have second opinions and choices with out intimidating you.

Just a reminder that life is short, so put things in order and say thank you, to the ones that stand with you and give a shoulder to lean on, and remember to pray and forgive the ones who walk away.  Thank You for all your post and God's Blessing On All!!  I haven't kept up with the post until  these last couple of weeks, but I will now and I will be praying for each and every one!!

Prov 16:24  Pleasant words are a honeycomb, sweet to the soul and healing to the bones."

[Trey]

I need to correct an item -- you did not accurately quote me about moving decimal points.  If the PCR is already a percentage, you leave it alone.  If it is a ratio, you move the decimal point to the right, not to the left (which makes the number higher, not lower).  So your PCR really is 12.12%

I know that you said the lab switched to International Scale (IS).  On the IS the 3 log reduction is .1%

If you have multiple breakpoints such as b2a2 and b3a2, you add the PCR numbers together to get the total PCR score, and the log reduction is calculated based on the total number, not on individual numbers.  You said your previous b2a2 and b3a2 were both 23.45% -- that would be a very unusual statisical coinicidence, if accurate.  And even more unusual that the b2a2 would go from 23.45% to zero in a week (why 2 PCRs in 2 weeks?).  Not trying to be negative, just trying to double check.

[pamsouth]

Hi Trey,

I was hoping you would follow up with me regarding the decimal & rational.   You really pay attention!  I have really been reviewing these reports.  With the PCR LAB last week my emotions have been all over the place try to stay positive. 

I am with you Trey,  "very unusual coincidence."  This whole year has been confusing for me on my PCR.  The way the numbers are going up down seem weird to me, as the previous years have been undetectable. Before that I was felt so blessed to have such a wonder drug as Gleevec, except for that first year, and it was a ruff one.

By the way my ONC has been trying to get me to switch from Gleevec to Tasigna for about a year now.  I have taken Gleevec since 2005, (6 years)  My CBC are almost alway near perfect and my FISH is anywhere from 92% to 100 % normal nuclei.

The fish report for 10/18/2011 was 96 % normal 1 green BCR, 1 orange ABL and 2 yellow fusion signals (x1000).

I was just so excited today when I picked up my lab results.  This last week I was have anxiety attacks just thinking of changing drugs 7 that my leukemia was on the rise or had mutations, I hear it not so good if you into blast or acute, that was my fear, going into a blast.  In fact my doctor didn't even call me to tell me the labs were in yesterday like she did last Tuesday. Today I called the office and had them make a copy and went straight away to pick the lab report up.  After reading the lab all I cold say was Thank You Jesus.  Doc really had me scared last week. 

I beginning to  think something is not right with the laboratories, but what do I know I am not an expert.

The last two PCR are dated (1) 10/24/11, Collected 10/19/1011, The PCR before that one was, (2) date of report 10/18/2011, colleted 10/12/11.

The lab is BioReference Lab GenPath of New Jersey, (800-29905227.) I live in Greenwood, Indiana, just a couple miles south of Indianapolis, In. where my Oncologist office is.

I have the PCR reports in front of me. plus I am looking at the chart,  that has a scale dated from 8/29/2009 to last report 10/24/11. 

The reason the 2 PCR  is because my ONC was alarmed that my b2a2 and b3a2 were both 23.45 and she wanted to switch me from Gleevec to Tasigna.

But then again Onc  tried to get me to switch to Tasigna  last year, when one number was up just a tad, but the report said they had made a mistake, had to draw from another well (whatever well means) and it was negative.  Until I pressured the receptionist to check for more paper work, I found out there about 3 or 4 pages on the PCR report that Dr. didn't bother to tell me the lab made a mistake and drew from another well for PCR Then, I believe at that time the b3a2 ws only 0.19, which I though was strange to warrant another PCR and alarm me that Gleevec wasn't working and there were better drugs, and it would be in my benefit to change now!!  Even though the lab had already corrected the mistake, she still did a another lab and sent away.  I really didn't get the whole thing because first of all it was only up a tad  and the lab had already corrected the mistake.

I am looking at PCR report dated 10/24/11.  It shows B2A2 NOT DETECTED.  B3A2 12.12 %.  Now I a looking at the scale chart that says PRIOR ACCESSIONS;   Lab Rec 10/14/11 B2A2 & B3A2 both at 19.53 %.

Next one says Rec Date 11/23/10 B2A2 0.00 % & B3A2 0.10.  Next line up says.  Date rec. 11/23/10 B2A2 0.00 % & B3A2 0.19 %.  Next line up says, date rec. 6/19/10 B2A2 & B3A3 both 0.00, Next line date rec 9/19/10 is the same.  Next line is 8/29/09 is B2A2 0.00 % B3A2 1.20 %.  ALL THE E1A2 are 0.00 %. 

i noticed that from the date lab collected usually on a Wed to the date of report is usually 5 days, so wonder how quickly they get the blood lab and quickly it is processed in that there is a week end.

It does seem to odd to me that lab collected on 10/12/11 Wed, & lab collected on 10/19/11 Wed, b2a3 would go to 0.00 % from a 23.45 %.

It also seems odd to me that both b2a2 and b3a3 would be 23.45 % on 10/14/11 and both b2a2 & B3A3 would be 19.53 % on 2/24/11.

I really need to scan this document over to my laptop and attach it, but not sure I could figure it out in a short time.  Have not scanned anything over and attached to a document for a long time.  But I believe (if there are no type error) these number are correct.

I was glad to hear you question the numbers, as I don't know anyone to compare these notes with, just had a gut feeling the number seemed odd.  However I am reminded that a drop of blood out of millions of cell could pull up anything just seems odd that some of the number are identical on two different genes.  Is that what you call b3a3 and b3a3 genes?

I know most people just go along with whatever a doctor says, but I have been around the health care for so long and I have seen so many mistakes.  We took care of my mother for 3 years before she passed and I spent many hours in the hospital.  My husband was sick for 2 month last year and I thought I was going to have to put him in the nursing home.  It turned out that he was allergic to the generic of mobic an arthritis medicine and the doctor kept increasing the dosage and added pain, pills, gabatone and predizone  and he was over medicated.  Think I misspelled some of those drugs. He  swelled up, couldn't hold a utensil in his hand or button his shirt and falling down. His lab were so awful and he had a bleed.  I was taking him to so many doctors, thought he might have cancer finally weaned him off the medicine and now he is working part time.  Then my 38 year old son just got out of the hospital a couple of weeks ago,  He was in 3 hospital for 88 consecutive days, and on full life support for about 30 days.  I carefully documented his journal on caring bridge and kept daily notes.  He is now home taking care of himself but still has pneumonia in the lower left lung and braces on his feet. Well enough said but I have been around this redo before.  I am just getting to old at 63 and with CML  stressing is not good thing.  In fact back in Feb had to change my blood pressure med as developed irregular heartbeat, to much stress, also had 2 deaths in the family.  Seems like I have spent a lot of my retirement years being a caretaker.

Thanks for your comments I really appreciate them, as have been stressing waiting to get this report, but I really feel relieved that the pcr is much better then the one two weeks ago 7 perhap the labs is have some difficulties.  I told my Onc my CBC and Fish report are so good, and she said yes but this PCR is so much more sensitive, but added it does have room for error as it is magnified over and over. Also she said my CBC will not be good within the next 6 months.  So she said lets just do another PCR go off gleevec for 2 weeks and then go on Tasigna, and it will be a piece of cake and you won't have to worry. But some reason I just had a bad gut feeling it was not a good ideal at this time to be thinking of switching from Gleevec.  I read somewhere that over 88 % of patients that have been on Gleevec since 1997 are still alive and doing well that is a pretty good track record.  I know these trials experiments are important but so much uncharted territory.

Was wondering where you get all your knowledge on the subject of PCR and the log, etc?

Thanks Again

[Trey]

From what you said, I believe the numbers in the PCR where it says "B2A2 & B3A2 both at 19.53 %" means that this number is b2a2 and b3a2 added together, not each individually.  Same with what you said about the 23.45% number previously (which you did not report this time in your list of PCRs).

But given the loss of response, if it were me, I would switch to another drug, either Tasigna or Sprycel.  There is no reason to feel like Gleevec is a family member that you would be discarding.  If Gleevec is not working well enough, you should do something different, either more Gleevec or another drug.

[pamsouth]

Trey I would agree, but in light of my PCR have a significant drop in just two weeks I would have to disagree, regarding into jumping into switching from Gleevec to another drug, so quickly!

Thanks for taking the time to read my wordy post.  I appreciate your comments.  Pam