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Severe Pulmonary Hypertension


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#41 pammartin

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Posted 15 August 2014 - 11:25 AM

Ta Da! Undetectable! Continued complete molecular response. The oncologist is comfortable waiting another month to begin TKI again, to give PH specialist (and me) time to get the PH regulated. I also read a print out from the office stating PH caused by Sprycel can be reversed in some situations. This is the first time I have heard this, so far what I have been told and read points to irreversible damage and long term progression. Continued excellent news, now once again patience is required until next Thursday when the heart cath is done. I am researching first generation TKI's against the latest introductions. Taking a med that has many years of success is still where I want to go, oncologist wants me to begin on newer medication. It has been a whirlwind journey with several ups and downs, nice to be looking at the up side. Woo Hoo!

#42 Marnie

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Posted 15 August 2014 - 05:55 PM

Yea!!!!  That is GREAT news!  Everything I've heard points to heart damage that can be reversed when taken off Sprycel.  Keeping my fingers crossed for you! 

 

I just got home from having an echocardiogram done.  Still feeling tightness in my chest when I breathe, even though my doc doesn't hear anything in my lungs.  He decided the echo would give us good information to make a decision about switching drugs, staying the course, or lowering dose.  Your PCR numbers make me hopeful that I'll be able to drop dosage to 40 mg. 

 

Anyway. . .I'm drinking a glass of wine right now, and am going to toast your good news!

Marnie



#43 pammartin

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Posted 15 August 2014 - 08:31 PM

Aww Marnie,

 

Was hoping you were feeling better.  I know you are on top of this so I won't preach about pushing for answers.  I need to sweep my own doorstep for that one.  Please let me know the echo results.  Positive thoughts for answers and a good solution that will help you get to feeling much better.

 

The PH doc called today and moved heart cath to 29th of this month but he said if results are good we can still move forward with removing IV after reducing med while going on pill form.  I asked him about the damage caused by TKI, he was not quite as positive as the oncologist.  He is the one who sent the info to oncologist, I didn't know that.  Go figure.  Anyway, he said because the disease is so rare he would not say pressures would return and stay at normal level, but he would not say they will not.  Well that was helpful.  LOL 

 

Wine....sigh....drink two (at least).  I will live vicariously through your consumption!!  Cheers

Pam



#44 Marnie

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Posted 15 August 2014 - 09:48 PM

Right now, my blown-out back is of more concern than anything else.  This is the second time since the original injury.  It was pretty darned agonizing the night that it happened.  Need to go take a muscle relaxant and go to bed.  I am getting tired of this.  50 sure seemed to hit me hard! 

 

Take care. . .

 

m



#45 hannibellemo

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Posted 16 August 2014 - 08:38 AM

Marnie,

 

I don't think it's hitting the 50 mark that is the problem. It's the magical thinking that you're still 25!  :D

 

About the doc not hearing anything in your lungs, I'm a very literal person, put me out of my misery, does he say he doesn't hear anything other than normal breath sounds? He can hear normal breath sounds all the way down? I'm assuming he hears normal breath sounds - but my onc always tells me he can hear normal breath sounds all the way down ever since I had my PE, because, of course, with a PE, you can only hear normal breath sounds down to the point where the lung is no longer expanding. For awhile my breath sounds ended alarmingly high up on my back.

 

I have trust issues.  :)

 

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>


#46 Marnie

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Posted 16 August 2014 - 09:03 AM

I think that at first, my onc wasn't careful about listening to my lungs, but now he is.  I don't remember his exact words, but ne heard normal breathing.  I think one comment (but I can't remember which doc. . .probably my PCP before I had the thoracentesis), said my breathing sounded "soft" in one part of the lung. 

 

I think part of my problem is that my body seems to work pretty hard at masking symptoms and compensating.  When I had almost 2 liters of fluid in my lungs, all of my vitals were absolutely perfect.  My doc commented that on paper, I was perfectly healthy, and anyone looking at my information would have a hard time knowing there was a problem.



#47 pammartin

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Posted 16 August 2014 - 09:30 AM

Trust issues, I have developed them in the past three years when it comes to the medical field, one size does not fit all and unfortunately it often seems to be how we are viewed.  I was treated for a respiratory infection the ER docs kept saying heart and lungs sound good.  In their defense, they did.  Guess I can't complain too much about that.  My mother had difficulties with her lungs and it seemed any doc could hear when she had fluid or was struggling to breathe.  I think now her body did not do a great job at masking symptoms, but other bodies do. 

 

If 50 is the new 30 or 40, can't remember what Oprah was quoted, then I am missing the mark.  Inside I think I am 25, but one trip up the stairs and I am reminded I am not nearly that young.  ;) 



#48 Pin

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Posted 27 August 2014 - 01:01 AM

Hey Pam, congratulations on your latest test! At least that is holding steady for you as you work out the other issues :) Crossing all my fingers for you that your body recovers from this trauma as well 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


#49 pammartin

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Posted 30 August 2014 - 07:51 PM

Sometimes you have to toss in a Tasmanian Devil fit to be heard. After canceling heart cath fifteen days ago Presby called to tell me Thursday night I was not scheduled for the right heart cath Friday and it would be another week or more before I could get in. I threw what amounted to a childish fit and stated I had fired an oncologist before, a revered cardiologist was no different. After many calls back and forth and several additional tantrums, I have unhooked the IV Remodulin, removed the Picc line and began oral drug therapy for the PH, Letaris and Adcirca. The med changes were approved by Dr. Simon's office. This was the plan, but it previously was on hold till heart cath. I have been off the Remodulin for 48 hours and 24 hours on oral meds. So far so good, heart rate is higher and a few more chest pains but nothing that is abnormal from transferring from IV to oral. It will take a while to get where I was with IV but quality of life and positive mental health is half of recovery. My breath is a bit shorter right now and my energy level a bit lower, but for me, it is worth the change.

I have decided to try Tasigna and I will start after I have been on these drugs for 4 weeks, if it does not work well I can always move forward with the second generation drugs. All in all everything is going very well, I am not sure all damage from the PH will ever be reversed but I believe I am still moving in a positive manner and all the news is good!

Even when it seems like you can't take another day, don't give up, there is light at the end of the tunnel.
Pam

#50 VickiW

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Posted 31 August 2014 - 05:54 PM

Oh Pam, I am so sorry.  I haven't been on for quite a while either because I was doing so well that life just kind of got in the way.  I also had a much much milder problem from the Sprycel with paricardial and pulmonary effusion.  My Onc caught it right away and tho it took a bit of trial and error I am now back on track and holding PCRU on the smallest dose of Sprycel and he is still watching me like a hawk.  I'm scheduled for a brain MRI on Tuesday as they try to figure out if my neurological problems are more than just the drugs (possible Parkinson's  :wacko: )

 

This is just a very sobering reminder that even tho many of us have been doing well for many years (7 in my case) we are still taking a potentially lethal chemo drug, every day, that no one yet fully understands the long term effects of on our bodies.

 

So glad to hear you are moving in the right direction!  I personally really appreciate you taking us on this journey with you.  We are all in this together and keep teaching the doctors by learning from each other! :D


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#51 Pin

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Posted 31 August 2014 - 07:59 PM

Pam, sometimes you gotta do, what ya gotta do  :)  Glad to hear they're helping you out though. I've thrown my share of tantrums, this disease can make you feel very frustrated!

 

As a side note, how long were you undetectable before you had to stop? I'm wondering (and you have probably already thought about this) if it's worth seeing if you become detectable again before you restart anything? You may be one of those you can stay off therapy for an indefinite period of time? I hope so! :)


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


#52 pammartin

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Posted 31 August 2014 - 08:40 PM

Hi Pin,
I can't remember exact dates anymore but I am over 2 years of undetectable. October will be my third year from diagnosis and I became undetectable somewhere early in 2012. We discussed not taking any med at my prompting, but local oncologist will not even consider staying off and watching for detection. He is a firm believer that anyone will lose response in time without TKI coverage. I am a bit nervous about starting another TKI even with the PH I would be lying if I said I am not enjoying the lack of side effects associated with Sprycel. A new drug just adds to the anxiety. I have several weeks before all this comes together, I am guessing I will be close to another BCR/ABL test before I begin Tasigna. I am feeling very lucky and fortunate even with the temper tantrums. LOL. I can't advise anyone to do what I did, there were many dangers I could have faced, but I did what was right for me.

#53 Pin

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Posted 02 September 2014 - 07:01 PM

That's a good record for undetectable - they think it's possible that some of us may be able to stay off indefinitely, but I guess nobody knows what happens if you eventually get detectable again (I know that in the short-term studies, people just went back on and all was well, it may be the same for a longer period of time?). Maybe for you it comes down to which is the lesser evil?

 

I hope you are feeling ok on your new oral drugs?


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


#54 pammartin

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Posted 02 September 2014 - 08:55 PM

With the picc line out and my freedom regained I am honestly doing wonderful. Visiting nurse here for last time this eve to complete the service. Oral drugs seem to be doing their job and I am doing quite a bit, just trying to remember to sit down when I feel tired. So far not one side effect I can note. I am enjoying the sun, well what little we have had the past few days, and it is nice to see a bit of color on my skin instead of pasty Sprycel white. It is amazing for me to think I was so ill in May. I am very thankful.

#55 JPD

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Posted 02 September 2014 - 11:02 PM

Pam - Here is hoping you have the same limited side-fx on Tasigna as I do.  I little hair loss on the legs and thats pretty much it.  I did have a few stomach issues and a few days of rash when I first started (and the occasional random fatigue) but that all cleared up after a month or two.  Ive just read through this entire thread and your positivity gives me something to aim for in my own daiily struggles with CML (and life).  Cheers!


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#56 pammartin

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Posted 16 September 2014 - 07:51 PM

JPD

I have still not started the Tasigna, have to admit I am really enjoying the break from TKI's in general.  I have another appointment with oncologist next week, am guessing my break is soon ending.  I have finally begun to tolerate both the Letairis and Adcirca together for the PH, and although tired with a few breathing problems I can't complain (too much). 

 

I am worried about the hair loss with any TKI, on Sprycel I had bald patches for about six months or so I think, it seemed like forever.  I finally took the clippers to my head with a short guard and figured it might grow out in some fashion of evenness.  I can't stop it from happening so I guess I try to make the best of it and hopefully get a laugh or two in the process.  I dyed it Lucille Ball red for short time just because I could, it was quite hideous but it made me laugh!

 

Thank you for your kind words, today was a bit of a down day for me, I smiled as I read your post. 

 

Pam



#57 Pin

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Posted 20 September 2014 - 09:24 PM

Oh good! I am so glad to hear you are feeling better :)

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


#58 Darlene_Jack

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Posted 27 September 2014 - 09:35 AM

Boarder line pulmonary hypertension
One breath at a time

Darlene jackðŸŒ...

#59 Darlene_Jack

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Posted 27 September 2014 - 09:43 AM

Hi Pam, I am new to this site. I was diagnosed with CML in July 2013. I was experiencing pressure in my chest shortness of breath, could feel my heart racing all the time n chest pain. I was told by my primary care dr it was nothing for about 4 months. It got so bad ivfinslly seen another dr. He immediately sent me to have my heart checked. I have boarder line PHT. My heart is regurgitating blood also. I was immediately taken off of sprycel and awaiting cardiac clearance to see if I can start another chemo med. I'm nervous. Hoping this next med works. Stem cell has also been mentioned to me. I am curious if people have had success with a complete cure. I am 42. I read your posts n your situation was similar to mine. Gives me hope.
One breath at a time

Darlene jackðŸŒ...

#60 pammartin

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Posted 01 October 2014 - 07:31 PM

Unfortunately each med seems to have their own particular nasty possibilities, finding the one that works best for you can be a challenge. I have noticed more people seem to be having difficulty after taking Sprycel for an extended period of time, when I first joined the board the majority of the people I read about experienced their difficulties shortly after beginning the drug. 

 

I would not remotely consider a transplant of any kind unless I was in blast phase and it was my only choice, even then I am not sure what my decision would be.  I know next to nothing about this disease, but if you can control it with medication it is better than choosing a transplant.  There are people who post on here testing the idea after a time one can stop the medication but the majority of professionals believe because it is a chronic condition we will be taking these TKI's for the rest of our lives. 

 

I am still waiting on PH medication to be regulated and I have a right heart cath scheduled for October 13.  My next oncologist appointment is October 24, but I will not have a PCR test till November.  I might run over on Friday and get my labs just to see where my counts are, I go back and forth between enjoying the lack of TKI in my system or worrying about losing response in the past month or so.  Best of luck with your journey, this is a good place.






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