Jump to content


Photo

Bosulif arrived today


  • Please log in to reply
15 replies to this topic

#1 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 02 January 2015 - 02:43 PM

Well happy new year to me. Today my first bottle of Bosulif arrived.

Been off Sprycel for over six months. Nov. 2014 I remain undetectable. I joined a group (thanks Gerry) of people who have stopped TKI, many are responding, some have had to restart med after a time. I have read and reread information on the pros and con's of taking/not taking the Bosulif. I think the PH scares me more than the CML.

To say I am confused would be an understatement. If I was in a trial and monitored monthly I think I would be comfortable. My insurance does not pay for testing so I am in program that picks up the tab but limits to four times a year. But I have already gone six months with only two tests and both were undetectable.

Rambling, I believe. I have been back and forth with the decision since I knew the Bosulif was on it's way. I had about 60 extra days while it was denied by insurance.

I don't think I have ever been this confused. The CML seems to be controlled, the PH often reminds me it is present. The Bosulif is so close to the Sprycel for side effects that alone makes me want to hide in the corner. I went down fast with the PH, another reason I want to hide in the corner and from the Bosulif. I thought maybe working it out on the forum would help.. The bottle is sitting on the counter and I am no closer to a decision.
Still rambling.

#2 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 02 January 2015 - 07:14 PM

Don't know what to tell you, Pam.  I'm at the point now where the cml scares me more than the p.e., so I have bumped up my Sprycel dosage to 100, knowing that in a few weeks I'll be going in to have them drain my lungs again.  I'm hoping that 100 mg might kick a little butt with my lousy pcr numbers. 

 

How comfortable are you with your doc's opinions and have you had a good discussion with him/her regarding your reluctance to get back on TKIs? 

 

How much data is out there on Bosulif?  I haven't heard much about it yet. 

Good luck with whatever you decided.



#3 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 02 January 2015 - 09:44 PM

Geeze Pammie,

 Everytime lls tries to get rid of me, you just get in more and more trouble. Kiddo if I was you I'd sit in that corner a while longer,just a day or so. I know you and I'm sure you have done every bit of research known to man on bosulif, which of course is not much because we are still guinea pigs. I'm always terrified of taking new drugs. What dose are you starting out on. Maybe all you need is the lowest dose. Of course you started out with a bang right from the get go, do you ever do anything normal? Ha look who's asking?

Here's what I do when I have to go on a new med.I sit in the corner (like You) but I wish I could have a margarita with me. Never happens, I make sure I am not alone, just in case my vision blurs and I can only see upside down(I don't think 116 will get me an emergency response. Then I sit and wait for a reaction----I get so cold,(forgot to put wood on the fire)--my head starts to itch(oh my God I'm getting alopecia, how am I going to cover all the bald spots-I need a chia pet fast) My hands are freezing and my fingers are going numb, I look in the mirror and stick my tongue out it's not crooked,but my vision is impaired so I must be having a stroke! My heart is pounding because I'm sure I am having a stroke(no maybe it's pounding because I'm having a heart attack) I've given cpr to two other people and it didn't work ,so I'm sure it won't work if I give it to myself.

 Okay it's been 5 minutes since I took the pill, my sister has to pee, no way will I let her leave me alone. I gotta pee too, but I'll be damned if I'm going to die on a toilet!

Okay I'm calmer now, even a bit hungry weiners and beans sounds good. So I eat a big bowl of beans soo good. 15 minutes later excruciating pain all through my body, oh my God another heart attack, or the new med killed my gall bladder I'm dying. Sis gives me 2 gas x then opened all the doors and windows Ahhhhhh pain gone me good.

See I had no problems taking 2 baby aspirin a day, You'll be fine        Love Billie



#4 Gerry - CML

Gerry - CML

    Member

  • Members
  • PipPip
  • 11 posts

Posted 03 January 2015 - 12:11 AM

Hi Pam,

Just to add to your confusion a number of the people who have had to restart on the FB site are actually in that first six month period.

 

On your testing, I'm currently sitting at being tested every two months, monthly testing is usually only done for the first six months, so you're through that period. There are people on the FB site being tested every three months.Feel free to ask some questions of people on the site. :)

 

Gerry (I had to get a new user name for the time being)



#5 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 03 January 2015 - 12:16 AM

Hi Pam,

Just to add to your confusion a number of the people who have had to restart on the FB site are actually in that first six month period.

 

On your testing, I'm currently sitting at being tested every two months, monthly testing is usually only done for the first six months, so you're through that period. There are people on the FB site being tested every three months.Feel free to ask some questions of people on the site. :)

 

Gerry (I had to get a new user name for the time being)

Hi Gerry I missed you, I got to keep my name, but they turned me into a boy!  Love Billie



#6 Gerry - CML

Gerry - CML

    Member

  • Members
  • PipPip
  • 11 posts

Posted 03 January 2015 - 12:30 AM

Hi Billie,

Our names are a bit confusing for people lol

 

I've been on holiday and forgot my password and Windows has managed to forget it as well. :D I'll hopefully have it sorted out next week.

 

How is everything going with your darling hubbie?



#7 SusanL

SusanL

    Advanced Member

  • Members
  • PipPipPip
  • 44 posts

Posted 03 January 2015 - 01:30 AM

I started on Bosulif 1 yr ago.  But, not before I ended up in e.r. for possible t.i.a. ( small stroke).  I don't think it was a stroke I think I had so much anxiety about starting another, my 4th TKI since being diagnosed 9 yrs ago. I had a real laugh at your post Billie.  Nice to know I'm not the only one who gets a little neurotic when starting a new med. I went off Tasigna 3 months before starting Bosulif and my PCR went from .007 to 85%.  Obviously never been negative since diagnosis.  3 mo on Bosulif my count went back down to .007.

    As to side effects, the first 2 mo were rough with the nausea, a couple days of diarrhea. I found Melatonin ( yes the supplement for sleep) helped with the stomach problems.  It finally went away and I have been feeling just fine, actually feeling the best I have on any of the TKI's.  Currently having skin issues Onc said may be allergy to Bosulif but I will just have to deal with it and take Claritin for itching.

    If I had been negative like you, I don't think I would have tried another TKI.   when I clearly saw trend going up, I would try another one.   I have heard there usually is no problem getting back down to the negative range if you do that.  

   Please let me know what you do and if you do start, how you do with it.

Susan



#8 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 03 January 2015 - 07:00 AM

Marnie, my oncologist is very conservative. Had insurance approved, I would have had the Bosulif in my hands three months ago. He does not believe in reducing or stopping except for needed breaks. He is clear in stating you take the pill or it will advance/mutate and you will not be here. Then I have PH specialist saying my chances are good for the PH to advance, especially since Bosulif is very close to Sprycel. The possibilities and circumstances boil down to 'unknown'. I have written a book via emails to PH doc and made about 20 calls to oncologist. Each believe their disease takes priority but will offer no advice for the other. Presby PH department is very honest. We know PH, CML is not something we can advise on.

Billie, if there ever was a time I needed your humor and your thoughts, it is now. I laughed at your post and woke everyone up. It should be easy, open the bottle and take the stupid pill. Just thinking about it sends my heart racing way past the rate I was told is dangerous for me. I am my worst enemy. I am still hiding in that corner, I am afraid.

Gerry, I am still getting a feel for the site, I almost copied my post from here and pasted it. I did notice many of the ones who were losing response did not wait long before stopping treatment. I am not sure I saw anyone in recent posts that lost response who waited a few years at undetectable before ending treatment. There is so much unknow, as Billie wrote, 'We are all guinea pigs' nothing is clear. I believe this is one of those diseases that will never be a 'one size fits all' because there are many variables and no two bodies respond the same. I didn't think much about the CML last year, I guess my focus was on the PH.. I did not do well with the picc line and being tied to a machine almost put me in a dark place I never want to visit again. That memory alone puts me in a fetal position. If I had any detectable traces we wouldn't be having this discussion, but right now I don't and here I am.

Susan, thank you for sharing your Bosulif journey. Billie's post about her Sprycel beginnings had me somewhat prepared for those railroad spike headaches. Your experience helps me mentally prepare for the new side effects and adds a perspective on what you would have done under similar circumstances.

It is no secret I analyze everything to a point the pieces barely resemble the initial subject. I am struggling with taking a medication that potentially adds further serious damage to control something that is currently sleeping. But I do not know how long that monster will sleep.

Ladies and gentlemen, it is a crap shoot and I am not great at rolling the dice.

#9 Gerry - CML

Gerry - CML

    Member

  • Members
  • PipPip
  • 11 posts

Posted 03 January 2015 - 07:13 PM

Hi Pam,

 

It would definitely be a lot easier if it was like cutting out a tumour and hey presto you're cured.  Whatever choice you make, you've thought about it carefully, which is always a good thing. :)

 

Your experience with going through the PH and not having the CML come bursting back to life would be helpful on the TFR site, as most of us don't consider ourselves "cured" and there is a concern if something major came up, then the CML would be back as well. This might or might not happen, but at least the others would be aware that it might not happen.

 

I was tryting to get some figures on the FB site to help your decision re post six month's relapse rate, but that hasn't happened yet. I might need to use a little bit of your story to explain what I'm after there. Hopefully that's okay.



#10 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 03 January 2015 - 08:01 PM

Gerry, whatever you want to use. I have already bared my insecurities on here and it's an open site. The FB one is closed. :-)

#11 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 07 January 2015 - 06:30 PM

Arghhhh Pam, I'm so sorry you are afraid and have to make this decision - are you any closer to deciding what to do? It's hard for those of us who can't help but analyse every possibility, it makes everything seem threatening. But when you have had things go wrong, as you have, it's so hard to convince yourself that things could turn out ok. I feel like the best option is being forced into a decision - if it comes back you go on the medication, then there is no actual 'choice' you have to make. I still think what you are on is a 'needed break' though. I hope you are ok xx


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#12 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 07 January 2015 - 08:21 PM

Pam,

 

You have a good thing going ... it's your decision but why change horses in midstream?

 

From what I gathered from the Stop Studies .. a high percentage of those that lose PCRU 

do so in the first six months ... you're already at what? seven months, and counting?  

 

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#13 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 07 January 2015 - 11:24 PM

Pam,

Have you tried the new med yet? I remember when you first went on Sprycel you grew horns.I really wish I could give you some good advice, but when it comes to cml you are a very difficult patient!    Billie



#14 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 08 January 2015 - 07:39 AM

Hi, Pam,

 

I am surprised that Bosulif was determined to be the best choice to you because of its similarities to Sprycel. I can't remember, have you taken Tasigna? If not, Is it contraindicated for you, too?

 

My take on this (from what I have read on your posts) is that you would love to just stay off a TKI and see what happens but you are concerned because then you would have to face your disapproving oncologist. Sort of like doing something you felt was right for you as a teenager but knew your parents would disapprove and you'd have to face their conseqences!   :D

 

There are no certainties in this life, as you say it is a crap shoot. Which decision will bring you more comfort?

 

Sorry you are having to make this decision, but for whatever its worth, it is your decision to make and that is, after all is said and done, a good thing. You are the captain of your ship (regardless of what your oncologist thinks)!

 

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#15 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 08 January 2015 - 01:31 PM

I wanted Tasigna but oncologist denied after the input from Presby oncologists. I have not figured out if it is my imagination or fact but anyone I have seen within a 200 or so mile radius does not believe in moving backward for TKI choice. At first I put it down to small hospital opinion but both UPMC Presbertian and Cleveland Clinic would not entertain any drug but the newer choices.

Although it might not be the best choice for everyone I have decided to hold the Bosulif till after my Feb testing. I am only a month away from my next BCR/ABL. I have the drug, if I test detectable there will no longer be a choice. For whatever reason I have maintained my response through 8 months. If it ain't broke, don't fix it.

#16 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 08 January 2015 - 01:38 PM

Wonderful! I've got my fingers crossed for your Feb. test!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users