28 replies to this topic

[pammartin]

Well, after 4 weeks of waiting I finally received my results from the heart cath and my latest labs. 

 

My internal pressures are down to 45, which is half of what they were in July.  The Adcirca and Letairis are doing the job of keeping things in check and I have moved from severe to moderate/mild for the PH.

 

My last Sprycel pill was taken around May 11, and 4 weeks ago when my latest test was taken I am still undetectable.  My oncologist wants me to start on the Bosulif and firmly believes anyone will lose response without treatment within 2 years.  He does not subscribe to the stopping of these medications and believes it is a negative choice.

 

I had a bit over two years of response before I had to take this extended break.  I am on a voucher program and my PCR testing is free because my insurance will not pay.  I can only be tested every 3 months with the voucher program.  My questions, do I move forward and take the Bosulif, or do I take my chances.  The interesting thing about my question is the Bosulif remains unapproved by insurance company, in time I believe this will be resolved. (I would like to try Tasigna but my oncologist is not willing to go this route).

 

Dr Simon from Presby believes the Bosulif will cause me some difficulties with the PH, probably side effects, but those issues are in the future.

 

Would appreciate any thoughts.

Thanks,

Pam

[rcase13]

Tasigna has known heart issues and is not recommended if you have heart issues. That is probably why he doesn't want you on it. I take it and they have to check my heart every time I go into the office. It seems like each drug has something scary associated with them.

[hannibellemo]

Pam,

 

That is really wonderful news about the PAH! The decision you are facing, on the other hand, is not. You are 7 months out today from taking your last Sprycel at which time you were 2+ years PCRU and remained PCRU at the 6 month mark. 

 

Are you concerned that you can only be tested every 3 months? Is that too long between PCR tests for your comfort level if you continue to stay TKI free?

 

I don't remember the percentage, but as I recall as good percentage of people on the trials failed to maintain PCRU by the 6 month mark and you have remained PCRU through 6 months. That is one milestone you have met. That would encourage me to try a bit longer.

 

After all, what your oncologist believes is only his opinion. Studies have indicated that even if one does relapse, regaining response has not been difficult so, other than piece of mind (which is important), what do you really have to lose? Only you can answer that question.

 

I really don't know much about Bosulif, but I think it is the TKI most like Sprycel. I will be very interested to read other's thoughts.

 

Good luck!

 

Pat

[gerry]

Hi Pam,

 

Your doc might want to talk to some of the people on my Treatment Free FB site. There are a number of people there who are over 2 years off their TKI and remaining TF.

[ChrisC]

It is good to read that your treatment for PAH is working: congratulations, Pam.

 

You can mention to your doctor that I have been off TKI treatment now for three years, three months, and still the  now-every-six-month PCR tests come back 0.000 (as they did for two years prior to stopping Sprycel).

 

I can only speak for myself: one patient who has successfully gone off treatment, with my onc's and a specialist's approval, but some info for him anyway.

 

A good working philosophy seems to be: do what you know is right, don't do what you know is wrong, and if you are not sure: wait.

 

Best of luck,

 

ChrisC

[pammartin]

I find myself considering an extended break from the TKI.  I wanted Tasigna and oncologist would not approve.  Bosulif is very similar to Sprycel, and like Tasigna is causes difficulties with heart and lungs. 

 

My oncologist is old school, he believes if you do not take the med you will not live.  In his favor a little over three years ago most of us were being told the same things.  These stop studies are fairly new I believe, and they are showing some results.  My thought is if I could gain another year or so without the drug while keeping the PAH under control it is only a win win for myself and my well being.

 

I have taken in studies on the stop TKI theory and my oncologist doesn't hold much merit in them.  If he has told me once, he has told me 100 times it is only a matter of time before a person loses response then they have the potential to develop mutations.  I don't believe I agree or disagree with him, I do not know enough about the subject to even make a guess much less an intelligent answer.

 

The PAH is a pain, the meds are fairly mild, but try climbing stairs without thinking you should go slow, but the time you reach the top you remember things are not the way they used to be.  Not long ago I had a few heavier bags of groceries and I dumped the cart at the store entrance and headed for my car.  I got about half way and had to sit them down and catch my breath.  I was more than a bit frustrated because I couldn't get enough air, and disappointed I can't go and do the things I used too without thinking about them first.

 

The quarterly testing was concerning me but after I thought about it, I would be doing no different than I am presently.  I am taking no meds and I get tested every three months.  The only difference is I would choose to not take the TKI instead of it being held for some medical reason.

 

Right now it is a moot point, BC/BS is denying every claim put in for Bosulif, I just received another refusal call today.  I thought I would be going nuts without the med by now but to tell you the truth I often forget it's presence, or lack there of I guess.

 

I am seriously considering joining the bandwagon of the wait and see study instead of taking these meds I know are going to make me ill.  Add to that I am not quite sure what the PAH meds and the TKI are going to do, I am not looking for a feud between meds within my system, and my labs remain low, assuming that is from the PAH meds.

 

Thanks for the replies and the guidance.  Feel a bit like a lost soul at this point, well that and damned if I do and damned if I don't. 

 

Have a peaceful day

Pam

[Pin]

Hi Pam, it's really good to hear that the PAH is under control I think it's a reasonable option to see how you go off the TKIs, you are still PCRU so it's worth seeing how long you can go I think. You could have the medication ready if you needed, and the trials indicate that people who go back on their meds regain their response anyway. It also would be interesting to see if your Bosulif gets approval at some point, I'm sure that is influencing your decision somewhat as well...

You must be frustrated about not being able to do the things you used to be able to do without thinking like climbing stairs. Is this something that can improve with time? I feel the same with my neck pain, it is making me a bit miserable

[gerry]

Hi Pam,

If you're interested I'd like to invite you into the CML TFR Facebook site. Their one requirement is that you've been six months treatment free, which you've met. I'll post the link if you'd like to check it out.

[pammartin]

Thanks Gerry, I am interested. Oncologist is determined I begin Bosulif by first of year. I am unsure of my decision. What I do know is Bosulif is headed my way via Fed Ex. At least it will be available after several denials.

[pammartin]

Pin,
I was reading about your trip and difficulties after. I am sorry you are having to deal with that on top of all the other things.

Not sure what strings were pulled, last week another denial and this week a confirmation letter stating it is on the way. I agree, having access is great I am just unsure of my agreement to begin.

Yesterday PCP was all excited because he heard heart murmur, then when I asked for acid reflux help he went into spasms. After calls to both PH and oncologist everyone is in an uproar and wanting me to do tests and retests. I told them all to talk to me after the first of the year. And if I needed them I know where ER was. PCP also discovered both my ears were infected, then I was asked if I knew. Uh.., well, no I didn't.

I have to constantly fight the urge to become unconcerned with much of their 'concern'. If I worried about everything they wanted me too, I might as well assume the fetal position in my corner immediately. I keep thinking these are the same people who tell me stress is not a good thing.

The PH can be very annoying. It is hard to describe because I am back to doing many things I couldn't do before. Stairs is one of those things that get to me quickly. I used to half run up them and even if several flights, I would choose over elevator. Now the 13 steps on the front stairway leave me winded and have to sit down at the top. Of course I often forget and try to run them out of habit. If I am on my feet for longer periods of time or walking uphill I become short of breath quickly. In the house on the first floor I rarely notice a breathing change.

I am told this is my new 'normal' and I will probably not improve greater than I have currently achieved. Again, I am skeptical but reserved. Does anyone really know? Answers like this one are based research and a group or groups of people and their results over time. I am such a weird goofball when it comes to this medical stuff (and life in general) I only know...'One size does not fit all' In clothing or possibilities.

Now do me a favor, please? Feel better.

[gerry]

Hi Pam,

 

I've sent you a message with the info, it appears to have been sent. Let me know if you don't get it, I might have to be a "friend" on here to exchange messages, that used to be the requirement.

[Billie Murawski]

Pammie,

      Tell me how to start a topic, This software is insane, I'm going to get my three warnings before I learn how to start a discussion.

@#$%@#$ new software.                                      Billie

[gerry]

Billie,

Go back a step to where all the topics are listed http://community.lls...eloid-leukemia/

there is a button on the top of the listing on the right hand side which says Start New Topic.

[pammartin]

Billie!!!!!!!!!!! Oh how I have missed you! Welcome, welcome welcome back!

[pammartin]

Billie, when you open up the site and click on CML you get the list of subjects under CML. On that page to the top right, like Gerry said, is the 'Start a New Topic'

We will walk you through anything, the site isn't hard once you get it rolling.
Smiling now.

[Billie Murawski]

Billie,

Go back a step to where all the topics are listed http://community.lls...eloid-leukemia/

there is a button on the top of the listing on the right hand side which says Start New Topic.

Thanks gerry,

I'll get it--hee hee I am so happy to be back. Love Billie

[Billie Murawski]

Billie, when you open up the site and click on CML you get the list of subjects under CML. On that page to the top right, like Gerry said, is the 'Start a New Topic'

We will walk you through anything, the site isn't hard once you get it rolling.
Smiling now.

Thanks Pammie, I've checked the board occasionally and I know you had a rough spell for the past year.(What ya wanna do that for)?

I told my cardiologist about it, I had my annual check-up last summer so I mentioned it to him, I think I might have said pms or something,(well I knew it started with a P). So he looked it up and informed me I got the letters wrong, but he was glad I told him about it. Since tki's are relatively new I always tell my docs about them and the side effects that are reported. So far all my docs have looked up the meds and learn more about them even my dermatologist. With all the new drugs that come out every day I want to make sure the doc knows all about it.              Keep on Smiling,        love Billie

[Pin]

Thanks Pam, you are very kind- I hope I feel better soon as well! That's good you got your approval, but now you have to make a decision though? Xxx

[pammartin]

I will have it here. From there I am unsure of my next step. Hope you are feeling better.

[pammartin]

I bumped this post because I wanted to again stress how important it is to keep track of your general health.  I know on TKI's we often want to blame anything and everything concerning side effects but there are times we are right.

 

Without going too far into old material I was diagnosed with Pulmonary Hypertension in 2014.  Because I have no other related symptoms or medical diagnosis it is called Idiopathic PH.  My PH specialist and Cleveland Clinic are convinced it was the Sprycel that caused the PH. 

 

I have been on a great path with Letairis and Adcirca for almost a year after having a picc line with IV Remodulin for 9 weeks to treat the PH.  I have been having some difficulty and saw Dr. Simon at Presby in Pittsburgh yesterday.  When diagnosed my internal pressure was 75, this February it was 35, yesterday it is 60.  I am fighting with fluid retention and the Letairis cannot be increased until I/they get a handle on the fluid.  Unfortunately, the Letairis can cause excess fluids.  Currently I am on 100mg of Lasix and it is still not removing the fluid where it should, although I swear I am desert dry.  The PH causes permanent damage, it can be managed but there are serious side effects.

 

My only reason for this post and update is to once again remind everyone to be careful of your symptoms, pay attention to your body, and do not accept the 'there is nothing wrong with you', comment.  I was at the local ER last Thursday, I had chest x-rays, labs, EKG, urine tests, and probably a few more I cannot remember.  They sent me home because they could not find anything wrong.  Many of us go to local doctors and hospitals and only see specialists a few times a year. I was in 3 hospitals last year, passed from place to place because all regular testing came back fine.  By the time I was diagnosed I was passing out from low oxygen and I have damage to the right side of my heart.

 

Note: Pulmonary Hypertension can only be diagnosed with a right heart catheterization or an echocardiogram.  The echo is not as accurate as the right heart cath but acceptable for initial pressure readings.

 

Please do not discredit how you are feeling or pass it off as a fluke.  I would rather you go to the doctor or hospital and have nothing wrong than become ill because it is believed to be a 'side effect'. 

 

I also want to stress the fact I believe that taking your TKI is important and following a plan with your oncologist will increase your chances of, or keeping, an undetectable reading.   Unfortunately, they all have side effects, finding the right one and dosage for your situation may take a while but it is worth the time to increase your quality of life.  My CML & PH doctors work well together and share information accordingly.  They spoke on the phone several times during my appointment yesterday.

 

Pay attention to your body, ask questions, and never believe you do not have the right to question results. You know your body best and you know when you are not feeling well.  Make someone listen to you and seek out second opinions.