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Anyone on Bosutinib??


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#21 chriskuo

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Posted 19 February 2015 - 02:49 AM

Gerry,

 

The information you posted is about a clinical trial.  I'm not sure what you mean Pam is too far along for a clinical trial.  The people in these trials have by definition under treatment for a number of years.

 

The standard of care has not been changed at this time.  A community physician is not going to override the prevailing standard.

Going to an academic center such as Cleveland Clinic provides a chance to be evaluated and for a program to be designed to meet her needs.  I have not heard that there is any approved protocol for discontinuance of TKI at this time, outside of a clinical trial.  A presentation of clinical trial results at an ASH conference is not an indication of that.



#22 pammartin

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Posted 19 February 2015 - 10:49 AM

First Billie - I am game and I will drive. I just wonder if the world is ready for a road trip from us. I think we should go I out and see Marnie. She could give us a private concert with her harp and then a demonstration of that seatless bike I still can't wrap my head around. Question is, 'Is Marnie ready for our visit?'

Criskuo - I believe Gerry means I have already been off the drug for nearly 11 months. Most trials monitor the patient as they stop the drug. Gerry will correct or clarify my guess.

As for my current oncologist,in his defense he was never interested in diagnosis, but he agreed to monitor me after a treatment plan was iniated. Although it is frustrating, I believe they are not sure where to go from here because they have always followed the specialist's recommendations. The Bosulif was recommended by the oncologists at UPMC Presbyterian Hospital while I was being treated for the PH.

My only concern is traveling to Cleveland, especially during this particularly challenging winter. And they were unhappy with me because the local oncologist found that trial for free PCR testing instead of paying for it out of pocket to Cleveland. They could refuse to have me return, who knows at this point.

I was more than a bit annoyed the oncologist would not listen or research the trials, but they are entitled to their opinions just as I am.

Moving forward.

#23 Darlene_Jack

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Posted 19 February 2015 - 12:23 PM

Hello all,  Mbrown2010, thanks for the information.  Its nice to hear from people that are taking Bosutinib(Bosulif).  I am suppose to receive my TKI today.  I will start tomorrow.  Like Pam, I was taken off Sprycel because of PH.  I have been off 5 months now.  Lost my PCR 0%.  I knew I was getting sick again but just wasn't ready to dive back into the new meds again.  I wanted to enjoy the holidays and do some fishing :)  I felt really good for about 3 months and then the aches, sweets, nausea came back slowly. 

 

Pam im sorry your not getting the answers and support you need from your DR.  Hopefully like everyone has said, you will find a good Dr at the Cleveland clinic.  I was told by my Dr. that Bosutinib has the least cardio affects compared to the others.  Hopefully it will work for me and maybe you also.  I understand how your feeling for sure.  Stay strong and remember if your not comfortable with your Dr. there are others.  I left my first Dr and now I totally love the Dr I have.  He really listens to me.  I live in Northern California but see a Dr. in Reno Nevada. 

 

Take Care Everyone and thanks so much for the information.  What a great group of people.


One breath at a time

Darlene jackðŸŒ...

#24 rcase13

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Posted 19 February 2015 - 12:54 PM

If you look at the side effects on drugs.com it seems to have the least serious side effects. Compare it to Tasigna! Tasigna is down right scary! This is what it said for pulmonary hypertension.

 

Respiratory

Very common (10% or more): Cough (up to 20%), nasopharyngitis (up to 12%), respiratory tract infection (up to 12%), dyspnea (up to 10%)
Common (1% to 10%): Pneumonia, influenzaicon1.png, bronchitis, pleural effusion
Uncommon (0.1% to 1%): Acute pulmonary edema, respiratory failure, pulmonary hypertension[Ref]

 

I know diarrhea and intestinal issues is no fun especially at work but I think it should be controllable with Imodium and GasEx. I will be watching this one. Tasigna has not treated me well. I will more than likely be pulled off of it due to Thyroid complications. My OnC tried to switch me to Gleevec but my insurance denied it. Not sure why. You would think since it is cheaper and soon to be generic they would be all over it.

 

I wish you the best of luck. Please report back your findings. Oh and make sure to stock up on Imodium! Meanwhile I am going to stop reading on the Internet... I have to go and take a Ativan...


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#25 Darlene_Jack

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Posted 19 February 2015 - 02:59 PM

Imodium and Gas Ex it is, thanks for the heads up rcase13 :)


One breath at a time

Darlene jackðŸŒ...

#26 gerry

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Posted 19 February 2015 - 07:30 PM

Hi Chriskou,

 

Pam is correct :) the trials need people about to come off rather than those that have been off for awhile.  My reply is based around Pam's issues with her doc and how she would like to proceed with her treatment.

 

There are a number of people who have successfully stopped treatment in the US outside of a trial, they have needed to stop for various reasons, including their own choice. They continue to be monitored by their own doctors.

 

As I've said previously, I'm from Australia and have come off Gleevec (off now for 15 months), I work closely with my doc and I'm sure he discusses my case with other doctors, but I am not on a trial as such.

 



#27 Dana

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Posted 22 February 2015 - 10:12 PM

I have been on Bosulif for 18 months now and it has had the least side effects for me. I was on Gleevec for 5 years with horrible side effects and then on Sprycel for 5 years with minimal side effects until the brain fog became unbearable! Not long after starting Bosulif, my general practitioner diagnosed me with high blood pressure, and said it has nothing to do with my Bosulif, that it was just my age and a lot of people have it. I am thinking it has everything to do with Bosulif!

#28 pammartin

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Posted 23 February 2015 - 03:17 AM

I enjoy blaming TKI's for anything and everything. It provides a healthy scapegoat.

Glad the Bosulif is working well for you with few side effects. The lowest dose with the least side effects I believe is going to be the future of TKI treatment.

#29 Darlene_Jack

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Posted 23 February 2015 - 01:04 PM

Hi All, Well I took the Bosulif Thursday night after I had dinner.  Was awoken around 2 a.m.  Nausea, vomitin and diarrhea.  What a rough night.  I called my Dr. to let him know the side effects.  He was off but the Dr on call told me to discontinue until I heard from my Dr Monday which is today.  Im thinking a lower dosage and take the immodium and anti nausea pill before I take the Bosulif.  Will update you all on how that works once I hear from the Dr.  Take care all :)


One breath at a time

Darlene jackðŸŒ...

#30 chriskuo

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Posted 24 February 2015 - 12:15 AM

The first few days I took it with lunch. During the first week, I did not have any nausea, but I did have diarrhea on several days. The second week that stopped. I am now taking the pill during dinner, not after dinner.

The last 2 days I have had a low-grade fever and am hoping it will go away soon.

#31 Darlene_Jack

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Posted 24 February 2015 - 01:21 PM

Thanks for the info chriskuo.  I am suppose to start the Bosulif again on March 2nd.  Round 2.  Hoping it goes better this time.  I will take with dinner again.  Hopefully this time is a lil nicer to me :wacko:.  Hope your feeling better Chriskuo.  Take care all.  I will update you all next week on round 2. 


One breath at a time

Darlene jackðŸŒ...

#32 lplaskin

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Posted 26 February 2015 - 08:13 PM

Billie M., I am out west and the cancer I'm at is nothing to brag about :wacko:  :angry:



#33 Marnie

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Posted 26 February 2015 - 10:38 PM

First Billie - I am game and I will drive. I just wonder if the world is ready for a road trip from us. I think we should go I out and see Marnie. She could give us a private concert with her harp and then a demonstration of that seatless bike I still can't wrap my head around. Question is, 'Is Marnie ready for our visit?'
 

The seatless bike doesn't work as well in the snow as it is supposed to.  Or maybe it's the operator.  All I did was mess up the grass in the front yard. 

 

Focusing on the ukulele now that the Christmas season is over, so when you come knocking on my door, you'll have to settle for that.

 

The guest room should be ready mid-August.



#34 pammartin

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Posted 27 February 2015 - 06:41 PM

Mid-August?? We are heading your way next week. I adore the ukulele.

I will bug you about the harp.

#35 pammartin

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Posted 27 February 2015 - 06:43 PM

Wait!!! You have grass? WOW. now I am jealous also.

#36 Marnie

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Posted 27 February 2015 - 06:44 PM

No. . .no grass.  I just dug through the snow with the front tire until I hit mud.  Not cool.  Kinda fun, though.



#37 Marnie

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Posted 27 February 2015 - 06:46 PM

Maybe by the time you get here, I'll have worked up some songs on the hammered dulcimer.  I haven't touched that instrument in a few years.  Time to get back to it.



#38 Trey

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Posted 27 February 2015 - 11:22 PM

So you "spun out" on grass now that it is legal there in Colorado, and you got hammered like a dulcimer.  Serves you right.



#39 Billie Murawski

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Posted 28 February 2015 - 01:02 AM

Mid-August?? We are heading your way next week. I adore the ukulele.

I will bug you about the harp.

WE can wear hula skirts.



#40 Billie Murawski

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Posted 28 February 2015 - 01:21 AM

The seatless bike doesn't work as well in the snow as it is supposed to.  Or maybe it's the operator.  All I did was mess up the grass in the front yard. 

 

Focusing on the ukulele now that the Christmas season is over, so when you come knocking on my door, you'll have to settle for that.

 

The guest room should be ready mid-August.

Pam I'll start packing now,oh Lord the two of us traveling cross country, they'll be calling us Thelma and Louise, or Lucy and Ethel. You have the red hair.

Marnie If the room isn't ready we'll use your tent. I want to sell the house it's getting too hard to keep up with, maybe we'll buy a tiny house on wheels I think that would be so cool. Pam are you ready to travel in a tiny house?

You can still drive.






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