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Shingles vaccine with CML


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#1 jmoorhou

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Posted 02 June 2014 - 09:18 PM

Anyone know a way of getting this?


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 Trey

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Posted 02 June 2014 - 09:36 PM

Ask your doc and you will get one.  Especially as you get older.  I have refused them just because...no good reason except I am ornery.  I had shingles at age 35, then not since.  No big deal.



#3 hannibellemo

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Posted 03 June 2014 - 03:21 PM

As long as our counts are reasonable we are not considered to be immuno-compromised (unlike those with acute leukemias). There has been much debate about the pros and cons and I've been told that the worst thing that would happen is that I might get a case of shingles (it's a live virus or otherwise this would not be an issue).

Pat


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"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>


#4 jmoorhou

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Posted 03 June 2014 - 03:46 PM

That doesn't sound encouraging. Getting a case of Shingles could be not so bad or maybe bad.... If you have benefits there are very good treatments for Shingles, I think that is the way to go. 


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#5 Melanie

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Posted 03 June 2014 - 05:31 PM

I was told not to get the vaccine because of the live virus and it's only works on about 50% of the people. As a side note, my husband was told to get it, not only for the shingles, but for fever blisters.  He suffered from fever blisters and cold sores all the time, then a friend suggested the shingles vaccine and although our insurance did not cover it, he decided to try it.  It's been over a year and he hasn't had a single fever blister or cold sore.  He says he can feel them coming on sometimes, but then it just goes away.   Our PC Dr believes it's because they're all part of the same virus family. My husband was very grateful it worked!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#6 jmoorhou

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Posted 03 June 2014 - 06:00 PM

I actually emailed Dr. Neil Shah at UCSF (Univ San Francisco) who has a Phd in CML, he told me it would lessen the ability of the TKI we take to work.....I'm really concerned to get it at this point....


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#7 Pin

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Posted 03 June 2014 - 06:21 PM

This is curious - Did he mention why that might happen?


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


#8 jmoorhou

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Posted 03 June 2014 - 06:34 PM

No I haven't actually paid the $600. to go in and get a consult.  But his emails sound academic and not particularly enlightening.  This is what he said:

In general, patients being treated for CML are advised to stay away from live vaccinations as a precaution due to a theoretical concern of immune suppression on tyrosine kinase inhibitor therapy.

Neil Shah

Make sense?


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#9 Pin

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Posted 04 June 2014 - 12:30 AM

Thanks for that

This for sort of makes sense, but not really as I always thought it was the other way around i.e., the concern of taking a live vaccination on a suppressed immune system due to tyrosine kinase inhibitor therapy. I wouldn't have thought that it would impact on the TKIs themselves?


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


#10 jmoorhou

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Posted 04 June 2014 - 06:05 AM

I know to me he mixed up his wording.  I talked to my Onc today and she said if you're immune system is suppressed and you take the vaccine you could get a very bad case of Shingles....notch another one up for CML, god I wish I'd gotten the vaccine a year ago, I was diagnosed 2/3/14.  But I will pick up the

Famiciclovar that was prescribed, I only have a sliver on my stomach, and maybe renew my medical marijuana prescription at the same time!This is starting to get to me!  I do think this questions is answeredUntil they come up with a non live virus.  I read at the Mayo Clinic site, the vaccine is only effective 50% of the time, and loses about20% of effectiveness for every decade after 60.  And some regular older people have gotten a case of Shingles from the Vac! So maybe we should stop worrying.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#11 Susan61

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Posted 09 June 2014 - 02:19 PM

HI Pat: I just got off the phone with a friend who just went and got the shingles shot with her husband.  She said she has seen so many bad cases of Shingles lately, and was afraid of getting it.  It just cost them $196.00 a shot!!!

I have heard so many conflicting responses about if we should get it with CML.

       I swear its always something new to worry about.  I just got out of the hospital last week with another blood clot in my leg, only this time its the left leg.  Have not felt right since I got it, and feeling very weak.  Absolutely no energy at all.  Wondering if the Coumadin is working differently on me this time??

    I was concerned and thought I should probably get some other tests.  Hope your doing fine.

Susan



#12 Antilogical

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Posted 10 June 2014 - 10:45 AM

My PCP was a bit concerned about giving me a script to get the shingles vaccine, but my onc said that once the labs are stable, it's ok to get the shot. The main issue is that immuno-suppressed folks may not be able to develop the immunity as well as those with "normal" immune systems. And since the shingles shot is not 100% effective anyway, our chances are even less that that we are protected. On the bright side, if we do get shingles after getting the vaccine, it may be a milder case.  Hence my onc's approval. I got the shot at my local pharmacy for $25. I experienced a few blisters around the site (not unexpected), but no other issues.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#13 hannibellemo

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Posted 10 June 2014 - 07:20 PM

Hi, Susan,

Glad to hear you're out of the hospital, but sorry you had to be there in the first place. I feel like everytime something goes wrong it just takes a little more out of me and a little more time to recover. Maybe that's what's going on with you this time. Hope you feel better soon. It could also be that you were run down in the first place taking care of everyone in your family. Sound like anyone you know? 

I've put off the shingles vaccine even though I've been told I could get it. The one that really scares me to get again is pneumonia vaccine. I felt like crap for several days and I was thinking it would be a good idea to amputate my arm at the shoulder for awhile - it hurt so bad. I don't think I'm a wimp (although you'd never guess it by my whining) but that really surprised me.

Do they have any idea why you're getting the blood clots? I've heard they can be really painful, too. You haven't said but I hope your mom is holding her own.

Take care,

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>





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