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#1 deva

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Posted 15 December 2016 - 05:04 AM

Hi guys.

 

This is my 1st post here. I am taking Gleevec 100mg 4 times a day but getting lots of side effects such as muscle cramps, low energy. I read here that taking a magnesium supplement helps with the cramps. I have a bottle of a mixture of magnesium, calcium and vitamin D pills lying around. Is that alright to take? I read the calcium and magnesium will be good for me. But what about the vitamin D inside the pill?

 

Also what other supplements are you guys taking? I was just diagnosed with cml and I do not know much. Your help will be much appreciated to help me move forward!!!!

 

I was wondering if I could also add a multi vitamin to my diet. is that a good idea?

 

What other suggestions can you guys give me?

 

 

Thank you!



#2 scuba

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Posted 15 December 2016 - 08:44 AM

Hi Deva,

 

As you are new to CML and asking for suggestions. I recommend you read a few things first to get you oriented.

 

You'll meet Trey soon enough who will comment directly. He has written a pretty good summary of CML information for people new to CML. Start there:

 

http://treyscml.blogspot.com/

 

Another very good reference are the actual guidelines doctors are encouraged to follow during the course of your treatment:

 

https://www.nccn.org...cml/index.html#

 

Throughout your journey and as you read and write on this forum, you will find many opinions on what to do, what not to do as you decide on your treatment plan. One size does not fit all. Many of us have unique responses that do require tweaking of dose, drug or other options. As you read, you may find you fit in with one or more other patients who have similar history to you. They can be a good resource as well. 

 

Regarding vitamins - where much debate does occur - I have found that TKI's do deplete the body of some minerals. In particular, magnesium. To help with cramps its recommended you take at least 400mg magnesium per day (I take Magnesium taurate) split in two doses - morning and just before bedtime. I do not take calcium as food contains plenty of calcium in our diet typically. I do take vitamin D3 in order to keep my vitamin D level above 50 and below 80 ng/ml. It's important to have your vitamin D level checked before supplementing too much. I take vitamin K2 (200 mcg) which works with vitamin D. 

 

Read, learn, participate and you will find the fear of CML begin to fade. You will be fine. CML is the one cancer that is being beaten by innovation in treatment. Also - go ahead and add a "signature" line to your profile detailing your diagnosis, TKI and treatment milestones (see mine below). It's  good way for others commenting on your questions to know your history as you proceed.


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"


#3 kat73

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Posted 15 December 2016 - 10:39 AM

Welcome, deva.  Is there a reason you are taking Gleevec 100 mg 4 X day instead of one 400 mg pill?


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#4 gerry

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Posted 15 December 2016 - 05:06 PM

If the magnesium doesn't work you can also try calcium. Tonic water is also recommended by some. Celery seed was the only thing that worked for me and continues to work with the cholesterol drug I am now on. I took the majority of my supplements at the other end of the day to the Gleevec.

#5 Trey

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Posted 16 December 2016 - 10:18 AM

I have a bottle of a mixture of magnesium, calcium and vitamin D pills lying around. Is that alright to take? I read the calcium and magnesium will be good for me. But what about the vitamin D inside the pill?

...I was wondering if I could also add a multi vitamin to my diet. is that a good idea?

 

For cramps you need potassium, magnesium and calcium.  Gleevec depletes these.  Don't take them at the same time as the Gleevec since they can reduce absorption.  You could do 200mg twice a day to make it easier.  That is what many of us do.

 

A good multi plus some extra Vit C are a good idea.  You can take these at the same time as Gleevec. 

 

Others here take a variety of vitamins.  You can take any vitamin you want while taking the CML medications.  Vitamins help the body overcome some side effects issues. 



#6 deva

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Posted 22 December 2016 - 12:47 AM

Hello guys. Sorry for late reply. I have not been feeling good at all. I have a burning sensation almost everywhere but especially in my arms. I have lower back pain which radiates up until my chest infront. Now I got some white spots in my mouth which go deep inside my throat. After seeing several doctors, I finally decided to go see a dermatologist who gave me a diagnosis of what it is(lichen planus). I'm in a lot of pain when eating. I cannot eat spicy at all.  The cramps got better when I took the magnesium. Thank you!!!

 

My doctor said I do not need any supplement at all. But I do feel I need some. The magnesium helped a lot.

 

Now I'm thinking of taking a multi vitamin but someone told me not to take it because multi vitamins contain vitamin B which is bad for CML especially vitamin B12. So I do not know what to do. Which multi are you guys taking?

 

For potassium is eating banana enough?

 

 

@kat73 I take 100mgx4 spread throughout the day. I was on 3x100mg. Now my doc increased it to 100mgx4. My gleevec is 100mg/pill.  

 

 

Thank you for taking the time to reply! Thank you!



#7 gerry

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Posted 22 December 2016 - 01:51 AM

Trey has been taking a multivitamin for years and it has never done him any harm. Possibly not enough vit B in them anyway as he does get cranky sometimes. :-)

#8 Trey

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Posted 22 December 2016 - 09:23 AM

Now I'm thinking of taking a multi vitamin but someone told me not to take it because multi vitamins contain vitamin B which is bad for CML especially vitamin B12.

 

If someone believes a multivitamin is bad for CML, then we should all really starve the CML by not eating at all.  In other words, a ridiculous assertion about multivitamins.  Take one, it is a good idea.  Your good cells are fighting and need a little help.



#9 scuba

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Posted 22 December 2016 - 10:18 AM

http://www.everydayh...t-deficiencies/


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"


#10 r06ue1

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Posted 22 December 2016 - 11:11 AM

@deva  My Oncologist was fine with a multi-vitamin and I take Vitamin D also.  


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#11 thatguy

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Posted 22 December 2016 - 09:24 PM

Hello guys. Sorry for late reply. I have not been feeling good at all. I have a burning sensation almost everywhere but especially in my arms. I have lower back pain which radiates up until my chest infront. Now I got some white spots in my mouth which go deep inside my throat. After seeing several doctors, I finally decided to go see a dermatologist who gave me a diagnosis of what it is(lichen planus). I'm in a lot of pain when eating. I cannot eat spicy at all. The cramps got better when I took the magnesium. Thank you!!!

My doctor said I do not need any supplement at all. But I do feel I need some. The magnesium helped a lot.

Now I'm thinking of taking a multi vitamin but someone told me not to take it because multi vitamins contain vitamin B which is bad for CML especially vitamin B12. So I do not know what to do. Which multi are you guys taking?

For potassium is eating banana enough?

@kat73 I take 100mgx4 spread throughout the day. I was on 3x100mg. Now my doc increased it to 100mgx4. My gleevec is 100mg/pill.


Thank you for taking the time to reply! Thank you!


The Lichen Planus... is that a new development? I've noticed a some areas in my mouth getting sort of white and my paranoia has driven me to lots of research..
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#12 deva

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Posted 22 December 2016 - 09:46 PM

If you are having some white spots in the mouth then definitely go check it out. I met with several doctors and all kept saying I need to do a biopsy to know what it is. As last resort I went to a dermatologist who finally gave me this diagnosis and said no need to do the biopsy. He also said I should not eat spicy at all.

Which brand of multi are you guys taking? Is centrum or kirkland brand good enough?

Do you guys also get the burning sensation in your arms?

#13 tiredblood

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Posted 22 December 2016 - 10:59 PM

Hello guys. Sorry for late reply. I have not been feeling good at all. I have a burning sensation almost everywhere but especially in my arms. I have lower back pain which radiates up until my chest infront. Now I got some white spots in my mouth which go deep inside my throat. After seeing several doctors, I finally decided to go see a dermatologist who gave me a diagnosis of what it is(lichen planus). I'm in a lot of pain when eating. I cannot eat spicy at all. The cramps got better when I took the magnesium. Thank you!!!

My doctor said I do not need any supplement at all. But I do feel I need some. The magnesium helped a lot.

Now I'm thinking of taking a multi vitamin but someone told me not to take it because multi vitamins contain vitamin B which is bad for CML especially vitamin B12. So I do not know what to do. Which multi are you guys taking?

For potassium is eating banana enough?

@kat73 I take 100mgx4 spread throughout the day. I was on 3x100mg. Now my doc increased it to 100mgx4. My gleevec is 100mg/pill.


Thank you for taking the time to reply! Thank you!



#14 tiredblood

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Posted 22 December 2016 - 11:06 PM

FWIW, my palms and soles of my feet burn at times. Also, I get burning sensations on my arms, mostly below the elbows on the areas where there is no longer any hair.

Twice I've had white spots in my throat. First time, I went to 2 different ENTs. Second ENT diagnosed tonsillitis, saying it was inflamed residual tonsillar tissue from where my tonsils were removed many years ago when they used a hook and snare procedure. Antibiotics and medrol dose pak cleared it right up. It felt like I had a stick in one side of my throat. I didn't do anything on the second iccurance and it finally went away.

#15 deva

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Posted 23 December 2016 - 02:45 AM

FWIW, my palms and soles of my feet burn at times. Also, I get burning sensations on my arms, mostly below the elbows on the areas where there is no longer any hair.
Twice I've had white spots in my throat. First time, I went to 2 different ENTs. Second ENT diagnosed tonsillitis, saying it was inflamed residual tonsillar tissue from where my tonsils were removed many years ago when they used a hook and snare procedure. Antibiotics and medrol dose pak cleared it right up. It felt like I had a stick in one side of my throat. I didn't do anything on the second iccurance and it finally went away.



Hi. Thank you for taking the time to reply to me.

How did you know it was tonsilitis?
Did you do any biopsy?

#16 Trey

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Posted 23 December 2016 - 10:23 AM

Lichen Planus is not actually a diagnosis, since it is just a description of the bumps which can look like lichen on a tree. 

https://en.wikipedia...Crustose_lichen

 

"Lichen Planus is a chronic recurrent rash of unknown cause with no established cure."

http://www.medicinen...nus/article.htm

 

For patients taking a TKI the bumps can take many forms, including the Lichen Planus form.



#17 thatguy

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Posted 23 December 2016 - 01:44 PM

Lichen Planus is not actually a diagnosis, since it is just a description of the bumps which can look like lichen on a tree.
https://en.wikipedia...Crustose_lichen

"Lichen Planus is a chronic recurrent rash of unknown cause with no established cure."
http://www.medicinen...nus/article.htm

For patients taking a TKI the bumps can take many forms, including the Lichen Planus form.


The strange patches and sores are known to happen with tki's/cml, Trey?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#18 Trey

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Posted 23 December 2016 - 09:31 PM

Various types of rashes/bumps on skin and mouth tissue are frequent side effects of TKI drugs.  This is because they are not perfectly targeted against only the BCR-ABL kinase, but also affect other kinases we would prefer be left alone.  These off-target kinases vary by drug, but the TKIs generally inhibit c-Kit and PDGFR as "collateral damage" which can affect the skin and mouth tissues resulting in rashes and other eruptions such as the Lichen Planus form and many others.  So the real diagnosis is TKI side effect.

 

Just to provide the full story, these off-target kinase inhibitions allow the drug to work against other types of cancers such as Gastro-intestinal stromal tumor (GIST) where c-Kit needs to be inhibited and several types of cancers such as dermatofibrosarcoma protuberance and CMML where PDGFR needs to be inhibited.  Gleevec is also used for these two cancers.


Edited by Trey, 23 December 2016 - 09:38 PM.


#19 tiredblood

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Posted 23 December 2016 - 09:36 PM

Hi. Thank you for taking the time to reply to me.

How did you know it was tonsilitis?
Did you do any biopsy?

No biopsy. It cleared up with the antibiotic plus medrol dose pak where just a round of antibiotics prior to that didn't clear it up. The spots in my throat and pain went away.

#20 tiredblood

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Posted 23 December 2016 - 09:39 PM

Various types of rashes/bumps on skin and mouth tissue are frequent side effects of TKI drugs. This is because they are not perfectly targeted against only the BCR-ABL kinase, but also affect other kinases we would prefer be left alone. These off-target kinases vary by drug, but the TKIs generally inhibit c-Kit and PDGFR as "collateral damage" which can affect the skin and mouth tissues resulting in rashes and other eruptions such as the Lichen Planus form and many others. So the real diagnosis is TKI side effect.

Can't convince these doctors that TKIs have side effects --for the most part.




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