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New PCP?


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#1 Taylor

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Posted 16 February 2012 - 09:20 AM

Hi everyone,

My onc always asks me when I come in who my PCP is.  Well, I didn't really have one, so I finally made a first appointment with one for today.  Is there anything specific I should bring up with them (aside from the CML, of course)?  Or just touch base with them?

Thanks for any suggestions!



#2 ChrisC

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Posted 16 February 2012 - 10:14 AM

Hi Taylor,

My experience has been that my onc only treats the CML, and everything else is left for the PCP. Meaning, telling my onc about side effects and expecting some help always left me feeling a lack of care; it was good when I finally understood the balance of care and I looked to the right doctor for the right treatments. The PCP can help with so many things re side effects, and having one to go to at the time you need help is part of taking good care of yourself!

Health-wise, not everything is CML-related, and getting a good PCP will serve you well in the years ahead.

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#3 KerriD

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Posted 16 February 2012 - 12:00 PM

Hi Taylor,

I just had my first appointment with a PCP and it went well.  Prior to being diagnosed, my only healthcare was thru my OBGYN which is how I got started on this path.  She did a routine CBC to see if I was anemic and my numbers came back crazy.  I was lucky to find a PCP who personally knows my Onc and has treated others with CML.  One thing he is having me do is a Colonoscopy. He said with the CML and taking the Tasigna, a small polyp could grow quickly.... so he wants a baseline to be sure I'm all clear. 

I feel like I now have to be vigilant about my health and I do worry about the long term effect on my body with taking Tasigna.

We do what we can...right?

Kerri



#4 Taylor

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Posted 16 February 2012 - 12:04 PM

Thank you both for the advice.  I actually just got back and I feel like it went pretty well, just a check-up.  My blood pressure and pulse were fine which I was happy about, considering I'd been feeling stressed!

Kerri, could you elaborate on the connection between Tasigna and a polyp?  I'm curious about that.  I've had a lot of constipation since starting the meds, many BMs with blood due to it, so is it something I should be concerned about?  Thanks!

Taylor



#5 KerriD

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Posted 16 February 2012 - 12:30 PM

Taylor,

He did not eleborate much more than what I said above... He did not say the Tasigna would cause a polyp, he said it could cause a polyp to grow at a faster rate than normal.  He did ask if I have had blood in my stool and I said rarely but he thought we should go ahead with the Colonoscopy just to be on the safe side.

Kerri



#6 ChrisC

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Posted 16 February 2012 - 03:35 PM

Hi Kerri,

I hadn't previously heard about the increased polyps-possibility when on a TKI.

I was on Gleevec, and then on Sprycel, since dx in Oct. 2008 (currently on trial TKI cessation). My PCP had me do yearly fecal-blood card testing. For two years results were negative; last year it was positive. I had a colonoscopy in September 2011 and they found and removed two small polyps. Now I will have a colonoscopy every five years, in addition to continuing the yearly f-b card testing.

ChrisC

Message was edited by: ChrisC due to Trey and others clarifying there is NO evidence that TKIs increase polyp production. Thanks!


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#7 Trey

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Posted 16 February 2012 - 04:12 PM

There is no evidence of a relationship between faster polyp growth and TKI drugs.  I fail to see any reason for your doc saying that.  Many people (about 30%) have polyps in the colon, and most never know it. 



#8 Susan61

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Posted 16 February 2012 - 05:24 PM

Hi Kerri:  I have never heard of a relationship with TKI and polyps, but the thing that you said that caught my attention was that you said you rarely have blood in the stool.  You did not say you never have blood.  Blood can come from Hemorrhoids also.  I have had a colonoscopy  and they found a small polyp 10 years ago.  Then when I did my follow-up Colonoscopy 5 years later there was nothing.  I do have hemorrhoids which cause some bleeding if I have constipation.

       I think when you said rarely, just made him want to have you checked out as routine.  Most doctors are recommending the colonoscopy which they did not do years ago, just like all our other testing such as Mammograms etc.

    I think a baseline Colonoscopy is good to have for anyone over 50, and younger if they have a history of colon cancer in the family.

Susan



#9 KerriD

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Posted 16 February 2012 - 09:51 PM

Maybe he had that experience with other patients that are on TKI's...I have no idea...I was just relaying what my experience was... Also I am adopted with no medical history....so I have no problem with getting a baseline colonoscopy.



#10 Susan61

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Posted 16 February 2012 - 11:55 PM

HI:  Apparently you never had a colonoscopy before.  I just want to tell you the Prep is worse than the actual procedure.  I will be due for a new one soon.  We have had discussions on here before about the experience of a Colonoscopy.

If you have any questions just ask us.  Yes, maybe your doctor did see other patients with a problem.

Take Care

Susan



#11 NotJack?

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Posted 17 February 2012 - 11:48 AM

I have heard from friends that have had their second colonoscopy, that the new prep is better that the old stuff.  It is a good idea to have one - no doubt!.   Its not that bad a procedure, and can save your life. 


Jack


#12 Susan61

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Posted 17 February 2012 - 03:27 PM

Hi Jack:  Yes, it has gotten better.  Years ago,you had to drink gallons of this liquid plus do a enema.  Now its just in most cases where you just drink 2 bottles of Magnesium CItrate hours between each bottle.  I think it was one in the afternoon or early evening, and then another one early in the morning before you went for the procedure.  The drinking all liquid with nothing red in it was the hardest part for me. ITs been awhile, and I forgot a lot of what I did to prep.

I remember eating lemon jello and drinking clear chicken broth the whole day before.  Maybe its gotten even better than that over the past 5 years.

Susan



#13 eithne01

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Posted 17 February 2012 - 05:44 PM

My onc sent me for a colonoscopy about six months after starting glivec, no issues, just wanted to get one done.  Everything was fine but I will be having them every two years as he advised. I am now 43.



#14 Lizzybee

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Posted 17 February 2012 - 07:00 PM

My experience has been the opposite. My onc is wonderfully attentive about my side effects, plus he has a nurse whose only job is monitoring oral chemo patients to manage side effects and drug interactions, and to make sure they are getting their meds.  In contrast, I feel like my regular doctor is afraid to do anything for me now.  She sends my results for anything and everything to my onc. 






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