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Darn. . .numbers are up.


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#21 Trey

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Posted 02 October 2014 - 06:04 PM

Have you considered donating your hair for cancer survivor wigs?

 

http://www.cancer.or...igshairdonation



#22 JPD

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Posted 02 October 2014 - 06:06 PM

Sunshine - your issue about your hair is important to you and it is negatively effecting your life, so by all means feel free to share and bitch about it here!  Its not a small thing.  No, its not among the top problems that some of these drugs bring to the table, but that doesnt mean it it's nothing.  Tasigna is making ALL the hair on my legs fall out.  Which is kinda weird and people have noticed at times, but Ill take it if my numbers keep going down (and actually I kinda like it *blushes*).  Anyhoo, let us know how the new doo turns out :-)


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%


#23 Tedsey

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Posted 02 October 2014 - 08:10 PM

sunshineC,

 

You sound very sad.  I am sorry you are so upset.  What happened to you is not your fault.  Don't do something you may regret (since you loved your hair and it took so long to grow).  Severe emotional stress (such as a cancer diagnosis) can cause hair loss.  I have been told this by doctors and MedlinePlus explains it well:

 

"Physical or emotional stress may cause one-half to three-quarters of scalp hair to shed. This kind of hair loss is called Telogen effluvium. Hair tends to come out in handfuls while you shampoo, comb, or run your hands through your hair. You may not notice this for weeks to months after the episode of stress. Hair shedding decreases over 6 to 8 months. Telogen effluvium is usually temporary. But it can become long-term (chronic).

Causes of this type of hair loss are:

  • High fever or severe infection
  • Childbirth
  • Major surgery, major illness, sudden blood loss
  • Severe emotional stress
  • Crash diets, especially those that do not contain enough protein
  • Medications, including retinoids, birth control pills, beta-blockers, calcium channel blockers, certain antidepressants, NSAIDs (including ibuprofen)."

 

Also, when we hear the word cancer, most of us have the image of a bald head in our minds, so it is easy to believe that the drug you are taking is the cause.  I am pretty certain your hair loss is not from Sprycel or the CML.  Sprycel, or any of the TKI drugs, is not chemotherapy.  In the long list of side effects noted with TKIs, hair loss may be one, but the drug companies have to list almost everything people report for legal purposes (hair loss is a ubiquitous side effect listed for most drugs, not just cancer drugs). 

 

I also had lots of hair falling out when I first started Gleevec, but it all came back.  I have been on Sprycel for over 4 years and my hair looks better than ever (but likely not due to Sprycel--LOL)

 

Take care,

Tedsey



#24 sunshineC

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Posted 07 October 2014 - 12:25 PM

Thanks for understanding.  I really do like my new haircut.  It was definitely time to do something.  What WAS left of my hair was in very poor shape.  I did ask, but could not donate due to that.  I know my onc never said anything to me about what Sprycel was other than a TKI.  I didn't care, and still basically don't.  All I have to do is take a pill every day in order to live... I'm good with that.  However, when my first dose of Sprycel was delivered to my home, I opened up the box to a bag with a big 'BioHazard' sign on it.  On the second bag was a smaller Bio sign and the words 'a chemotherapy drug'.  That was the first time I learned I was taking any kind of chemo.  So, because my hair was good before, and got to the point where it was, I'm pretty sure it's the Sprycel.  The hairdresser did find 1/4" of new re-growth, so that was good news too.  I was sick again Sunday and Monday with the headaches, dizziness, nausea and stomach pain, but am fine today.  There just doesn't seem to be any rhyme or reason to how I'm going to feel from day to day.  But I have been able to put together several days of feeling fine, so if this is just the way it's going to be, I think I can handle that!  Just like Forest Gump - ya never know what you're gonna get!  What an adventure!!  LOL



#25 vermontmike

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Posted 12 May 2015 - 03:13 PM

Hello Marnie, I have some questions regarding pleural effusions. I used to be some what of a regular on here years ago. I believe we spoke concerning Sprycel and possible connections to cataracts. (Wound up having surgery on both eyes.)

 

Anyway, I had chest x-ray done a few weeks ago. (had major trouble breathing.) There was "moderate" amount of fluid on lungs. Went and had a thoracentesis. Had 1.5 liters of fluid removed, was tested for other "things", etc. (Negative) Was decided to stop Sprycel, take some prednisone, along with some other drugs to see if remaining fluid would go away. Went to Doc today, had x-ray and need to have lung drained again.

Bummer. So game plan is to have lung drained, then re-start Sprycel at lesser dose, lesser being 70 mg instead of 100 mg. Then check progress in maybe 4-6 weeks.

 

I have been PCRU for close to a year, yep took awhile, but I did get there. ( Was dx in 2007 ) Being off Sprycel is a little freaky, but so is the fluid in the lungs thing. I am wondering how long you were off Sprycel for when dealing with the pleural effusion? And how were you able to beat the pleural effusion boogie man? Your thoughts would be greatly appreciated, Mike.



#26 hannibellemo

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Posted 12 May 2015 - 05:15 PM

Hi, VermontMike,

 

You didn't ask me but I've also had pleural effusions at the 2.5 year mark on Sprycel in Feb. 2012 (similar to Marnie). I was off for nearly 12 weeks and almost lost CCyR. Don't go back on Sprycel too soon. Let the PE completely resolve or you will just be traveling in a revolving door and getting nowhere. I had one thoracentesis and the sterioids helped most of all. The diuretic did nothing.

 

I've been on 50mg ever since and doing fine. I regained MMR in August of 2013 and I reached PCRU this past test in Jan. 2015. Some people can't take any amount of Sprycel and be PE free.

 

Remember, let the PE resolve itself, then start back on Sprycel no more than 50mg. see how you do before raising it - if ever.

 

Good luck! 


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>


#27 Trey

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Posted 12 May 2015 - 07:05 PM

Agree 70mg is too much for restart, and would wait longer.



#28 vermontmike

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Posted 12 May 2015 - 07:33 PM

Hello hannibellemo ! Thank you for so much for reaching out ! How did your PE resolve itself ? Was that due to the steroids, or not taking the Sprycel?  Right now,  I am alright with not taking Sprycel until the PE goes away. Not sure if my Doc would be tho !

 

At this point I am looking to do another thoracentesis, get rid of fluids, and not take Sprycel , and see what happens. I really need to breathe! My Doc is looking to lessen the dose of the steroids gradually. wondering what steroids worked for you?



#29 scuba

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Posted 12 May 2015 - 07:34 PM

Actually, PE isn't that big a deal.  .18=PU. 

 

I've decided (without talking to doc) that I think I'll do 100 mg for a week to kick some butt, and then drop back down to 50 mg.

 

I hate being a turtle.  How fricking annoying.

 

Marnie,

 

Consider 20mg. - it could be the right dose to balance PE with PU.

Don't do 100mg for a week - a day maybe, but not a week. Sprycel is powerful - you don't want to trigger PE again. 

 

An alternative is to alternate between 20mg and 40mg. until you get your PCR back down again and then go to the lower dose.

You want to discover the lowest dose that will manage the disease and still get PCR response. Getting back on Sprycel, however, will get your PCR back down.

 

Also - on a separate note - when I started Sprycel, I also re-started aerobic exercise. Walking first followed by running and now sprinting. Imagine that - I run faster than kids down the street. Pleural effusion might be managed by deep breathing exercises that may be done through exercise or practice (http://www.yogadivin...ffusion-removal). I prefer exercise because I don't have to concentrate on the breathing - it just happens when you are trying to keep up with your dog. 

 

Getting rid of the fluid is what the exercise does. I never have suffered a PE while on Sprycel (high dose or low dose). Perhaps it was the exercise I was doing. Working your lungs may help overcome the tendency for Sprycel to cause PE.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#30 hannibellemo

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Posted 13 May 2015 - 07:54 AM

Mike,

 

I just took a regular garden variety corticosteriod, prednisolone. I didn't stop taking my Sprycel for a couple of weeks after it was determined I had a very small PE. That was a huge mistake. It became relatively large in that short period of time. I stopped the Sprycel and asked for the steriods based on research I had done. You have to taper off steriods or you will feel absolutely miserable. It may even be dangerous not to taper off. I took two packs one lasted longer than the other. Even though I tapered off very slowly I still crashed after taking the last one and felt horrible for the one day.

 

Tell your doctor you absolutely will not take Sprycel until your PE is resolved, or at least very small. Trust those of us who have been there over those of us who just know about it in theory.

 

It obviously took me much longer to regain MMR at 50mg but I still made it.

 

Good luck!


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>


#31 August1

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Posted 13 May 2015 - 02:51 PM

Marnie,

Sorry to hear your numbers are up but you did have a pretty good vacation from the Sprycel. That must have been pretty nice and you're still very close to MMR. I'd start back on the 50 mg and get your numbers back down gradually rather than take too much and risk the PE. Then see if you can reduce even further. If so, that would be really great. I'm hoping that I can reduce my dose at some point as well but I'm still on 100 mg. Also, have you considered trying something else like Tasigna? I'll admit that it's difficult for me to think about changing (I prefer the devil I know to the one I don't) but you might have a great response without the PE. 

 

Take care,

 

 



#32 vermontmike

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Posted 13 May 2015 - 06:44 PM

Hannibellemo, thanks so much for your input. I stopped Sprycel a couple of days after I was told about the P.E. on my own since the Doc was away.  Still doing the steroids. I had one thoracentesis, now looking at another. This is supposed to happen asap. It is funny, I was cruising along, doing fine and now this comes out of the blue.   






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