23 replies to this topic

[pammartin]

Just received my call from Cleveland Clinic, I remain undetectable.  I have been off TKI since March 2014 after developing PH from Sprycel.  Cleveland agrees to monitor my condition through my local oncologist (if he is willing) and if they send to lab that tests on the International Scale. They will do monthly PCR testing and labs for possible changes. 

 

This choice is what is good for me because the PH is also an ugly monster.  As long as I remain undetectable I will not take the TKI, if I lose response, there is no longer a choice. 

[gerry]

Good news on the negative.

[Dom]

Good news! I hate to ask ... What is PH?

[dede5]

So glad to hear your good news 

[Billie Murawski]

Congratulations, To be undetectable for so long is a good omen. It.s going to be a pain getting bw every month and waiting for the results.  Try to stay positive.                                   Billie

[pammartin]

Billie, I can take Prilosec and my liver numbers are great! Bring on the booze!!!

[Dona_B]

Congrats on the first and hope the second gets under control too.

 

Dom, don't feel bad. I don't know what half the abbreviations are here. And sometimes when I think I know what it is because it's a common abbreviation, it doesn't fit the context of the post.

[pammartin]

Dom,
PH = Pulmonary Hypertension. At diagnosis I was severe PH and my internal pressure was high. Now, 9 weeks of IV Remodulin, then transfer to Adcirca and Letairis pill form and my internal pressures are at a high normal. Except when I forget and run up the stairs or hurry somewhere, I am rarely noticeably short of breath. Last year I had hard time breathing in April. The PH is possible but rare, even for Sprycel. Only one other patient at Cleveland Clinic, and I am only patient at UPMC Presbyterian in Pittsburgh have PH from Sprycel. Dr. Simon, my PH specialist said it was from an internal perfect storm of events inside my body. Remember, it is rare.

[SUE]

Congratulations, Pam.

[scuba]

Dom,
PH = Pulmonary Hypertension. At diagnosis I was severe PH and my internal pressure was high. Now, 9 weeks of IV Remodulin, then transfer to Adcirca and Letairis pill form and my internal pressures are at a high normal. Except when I forget and run up the stairs or hurry somewhere, I am rarely noticeably short of breath. Last year I had hard time breathing in April. The PH is possible but rare, even for Sprycel. Only one other patient at Cleveland Clinic, and I am only patient at UPMC Presbyterian in Pittsburgh have PH from Sprycel. Dr. Simon, my PH specialist said it was from an internal perfect storm of events inside my body. Remember, it is rare.

 

No matter how you got there Pam - you are in your own cessation trial that has lasted more than a year! You are likely CML free (or your body now has a way to keep CML at bay naturally). Keep your vitamin D level high normal and eat your fruits and veggies. CML is likely a thing of the past for you!

 

p.s. Even if you have to go back on Sprycel - why not a much lower dose to avoid PH?

[pammartin]

Scuba,
It will be low dose if I have anything to say about it, but would have to take Tasigna. The Sprycel & Bosulif are too dangerous for me even at low doses. I have never had a problem with vitamin D, but I spend a lot of time outdoors. Maybe I just absorb better, who knows. I am afraid of the PH more than I ever was at the CML. I love fruits and vegetables, keeping them in my diet is good eating. Every month I remain undetectable is another milestone. I imagine at monthly testing I might have the barely detectable results at some time, we retest and life goes on. Thanks for the encouraging words and advice.

Best of luck to your continued progress with leaving the TKI behind you also!

[scuba]

Scuba,
It will be low dose if I have anything to say about it, but would have to take Tasigna. The Sprycel & Bosulif are too dangerous for me even at low doses. I have never had a problem with vitamin D, but I spend a lot of time outdoors. Maybe I just absorb better, who knows. I am afraid of the PH more than I ever was at the CML. I love fruits and vegetables, keeping them in my diet is good eating. Every month I remain undetectable is another milestone. I imagine at monthly testing I might have the barely detectable results at some time, we retest and life goes on. Thanks for the encouraging words and advice.

Best of luck to your continued progress with leaving the TKI behind you also!

 

Having a high vitamin D level might just be what's enabling you to stay undetected without a TKI. We don't know what your VD level was at diagnosis? There is evidence that levels only around 70ng/ml are cancer therapeutic. 

[pammartin]

My PCP tests for vitamin D on a regular basis, just part of her choice of testing. I would have to dig through copies from 2011 but my level was always good. Only problem I ever had was low potassium and magnesium, often when Lasix was used. I will try to find some of my initial results, finding older posts on here seems impossible. I took an A&D, B12, C, and Zinc supplements for years, Pittsburgh oncologist Dr. Sahovic pulled my suppliments along with my Cardizem/heart and Effexor/antidepressant.

I am fighting some major water retention currently, when I get that under control I will dig out labs from 2011 & 2012. I stopped getting copies when I leveled out, Cleveland noted my last labs were nearly perfect. Phone conversation, so no numbers.

[pammartin]

Scuba,

From January 2011, (long before actual diagnosis) to May 2013 my V-D levels were between 45-60, the highest during summer months and lowest in winter months. I called Cleveland but they did not run a Vitamin D on labs March 31.

[pammartin]

My vitamin D level was and continues to be in the normal range. Please be careful when taking supplements. They are good in moderation but are dangerous when reaching high levels in the body.  Also there are many products that are not made well, cheap does not always mean effective or a good deal.

 

Supplements and vitamins are not regulated so they can be manufactured without guidelines.

 

I want to note and I believe it is important, when I began Sprycel I was taking several supplements, including A & D.  My oncologist removed both from my daily intake, stating I need neither because my levels were normal.  I have never restarted these supplements or others.

 

We keep saying this disease is almost unique to every body, this is why some can stay off their TKI and others cannot go a month without losing the undetectable status.  Believing one supplement or another is going to create a difference across the board is difficult for me to comprehend because there is not one TKI or treatment for all.  Each one of us has to work through a process to see which drug at which level is going to be the best for us. 

Before you take any extra supplement, vitamin, or other, check with your medical professional(s) and request testing.  It does not make sense to me to just add on another pill without verifying the pill is needed.

[scuba]

My vitamin D level was and continues to be in the normal range. Please be careful when taking supplements. They are good in moderation but are dangerous when reaching high levels in the body.  Also there are many products that are not made well, cheap does not always mean effective or a good deal.

 

Supplements and vitamins are not regulated so they can be manufactured without guidelines.

 

I want to note and I believe it is important, when I began Sprycel I was taking several supplements, including A & D.  My oncologist removed both from my daily intake, stating I need neither because my levels were normal.  I have never restarted these supplements or others.

 

We keep saying this disease is almost unique to every body, this is why some can stay off their TKI and others cannot go a month without losing the undetectable status.  Believing one supplement or another is going to create a difference across the board is difficult for me to comprehend because there is not one TKI or treatment for all.  Each one of us has to work through a process to see which drug at which level is going to be the best for us. 

Before you take any extra supplement, vitamin, or other, check with your medical professional(s) and request testing.  It does not make sense to me to just add on another pill without verifying the pill is needed.

 

Pam - when did you last test your vitamin D level? during or after you stopped supplementing? It take two months for vitamin D level to reduce by half (if no exposure to the sun or other form is taken in).

 

Personally - and this is just for me, I have increased my vitamin D level up to near 70 ng/ml. I believe at this level it is therapeutic and help creates an "anti-cancer" environment. Normal range of Vitamin D is 30-50. Toxicity can occur at levels above 100 ng/ml. Regular testing assures proper management. In my case, my calcium levels are solid normal. Excess calcium in the blood would be a sign of too high vitamin D.

 

My point in all of this is for people to learn and know. There is a correlation between low vitamin D status and Cancer rates. 

 

http://www.webmd.com...dvanced-cancers

http://articles.lati...th/he-explain26

http://www.ncbi.nlm....les/PMC3081677/

 

You can not get enough vitamin D from food. You can get enough vitamin D from the sun - but only if the sun is higher in the sky and not obscured by clouds. I take vitamin D3 supplements and have been for almost two years. Only after I started supplementing with vitamin D3 did my PCR go "undetected" (for the first time) AND my blast count, which was always present (and in the so-called normal range (0-5%)) went to zero (at last BMB).

 

Too much of anything is bad. 

[pammartin]

Michael,

I agree and I believe you are responsible.  You have been working on a plan for a long time, and you have researched your situation in great detail.  For whatever reason your VD level is low, as several have stated theirs are also. Mine is good, and has been long before my diagnosis.  My last VD check was the week before Thanksgiving.  I think I mentioned Cleveland did not do a full work up.  Although I live in Pennsylvania, I somehow maintain my vitamin D level.  The supplements I was taking before diagnosis were not needed.

 

Mayo writes of the connection between several vitamins, including D and cancer.  And I am all for taking supplements, but taking them responsibility is important.  You noted several times you are taking the higher dose under the care of your oncologist and it is only for a short time to get your levels up.  If they reach a safe level you will still take the supplement but in lower doses.

 

I am huge on disclaimers.  Although unplanned I am off TKI, but I also do not recommend anyone stopping.  Mine was initially stopped because of the PH under oncologist care.  In January I began my personal journey of not returning to TKI, that is when my oncologist released me and sent me to Cleveland because he did not agree with my choice.  Now that Cleveland is on board, I am fairly sure he will be comfortable with returning to monitor me.  Technically, I was only off unsanctioned TKI for 2 months. 

 

You are very good with explaining this is right for you, and informing others of what might help.  But in doing that, just like in me sharing my stopping TKI, there is a responsibility to tell people this is your choice and should not necessarily be theirs, but either way it is under a professional's care and verified with testing. 

 

Going out and buying vitamins, supplements, or other is not responsible with our disease.  And I cannot express enough the quality of some of the junk out there that is for sale is poor to horrible. 

 

I hope people make responsible choices and go through their professionals as you are doing.  Testing levels is the first step, then adding what is needed will only be a help to the body, cancer or non-cancer. 

 

You wrote not long ago you are not afraid of the CML.  I have lost that fear also, I do not know if it is because I have been undetectable for so long or because the PH scares me more.  I chose to remove my IV Remodulin treatment for the PH, and begin the oral treatment before Dr. Simon was ready for me to do so.  Living with the picc line was something that put me in a dark place I never want to revisit.  I would not suggest to anyone else to do this.  Although for me it was the best choice and it ended up working out, I could have easily died from removing the picc incorrectly or abruptly stopping the Remodulin.  I knew that before I sat down and pulled the line. 

 

I search for your posts and your results because you are willing to try ideas and treatments that are unconventional.  And I believe you know what you are doing and it is right for you.  All I am trying to get across is what is right for you or I is not right for everyone.  And, you are much better at this than I, you are going through your journey with medical approval. 

[scuba]

Michael,

I agree and I believe you are responsible.  You have been working on a plan for a long time, and you have researched your situation in great detail.  For whatever reason your VD level is low, as several have stated theirs are also. Mine is good, and has been long before my diagnosis.  My last VD check was the week before Thanksgiving.  I think I mentioned Cleveland did not do a full work up.  Although I live in Pennsylvania, I somehow maintain my vitamin D level.  The supplements I was taking before diagnosis were not needed.

 

Mayo writes of the connection between several vitamins, including D and cancer.  And I am all for taking supplements, but taking them responsibility is important.  You noted several times you are taking the higher dose under the care of your oncologist and it is only for a short time to get your levels up.  If they reach a safe level you will still take the supplement but in lower doses.

 

I am huge on disclaimers.  Although unplanned I am off TKI, but I also do not recommend anyone stopping.  Mine was initially stopped because of the PH under oncologist care.  In January I began my persona journey of not returning to TKI, that is when my oncologist released me and sent me to Cleveland because he did not agree with my choice.  Now that Cleveland is on board, I am fairly sure he will be comfortable with returning to monitor me.  Technically, I was only off unsanctioned TKI for 2 months. 

 

You are very good with explaining this is right for you, and informing others of what might help.  But in doing that, just like in me sharing my stopping TKI, there is a responsibility to tell people this is your choice and should not necessarily be theirs, but either way it is under a professional's care and verified with testing. 

 

Going out and buying vitamins, supplements, or other is not responsible with our disease.  And I cannot express enough the quality of some of the junk out there that is for sale is poor to horrible. 

 

I hope people make responsible choices and go through their professionals as you are doing.  Testing levels is the first step, then adding what is needed will only be a help to the body, cancer or non-cancer. 

 

You wrote not long ago you are not afraid of the CML.  I have lost that fear also, I do not know if it is because I have been undetectable for so long or because the PH scares me more.  I chose to remove my IV Remodulin treatment for the PH, and begin the oral treatment before Dr. Simon was ready for me to do so.  Living with the picc line was something that put me in a dark place I never want to revisit.  I would not suggest to anyone else to do this.  Although for me it was the best choice and it ended up working out, I could have easily died from removing the picc incorrectly or abruptly stopping the Remodulin.  I knew that before I sat down and pulled the line. 

 

I search for your posts and your results because you are willing to try ideas and treatments that are unconventional.  And I believe you know what you are doing and it is right for you.  All I am trying to get across is what is right for you or I is not right for everyone.  And, you are much better at this than I, you are going through your journey with medical approval. 

 

Hi Pam,

 

I need to be very clear. I am not going through my journey with "medical approval". Quite the contrary. My oncologist did not want me to stop taking Sprycel - especially since I was getting such great results with such a low dose although never "undetected" - in his mind it was 'good enough'. I had no side affects I could feel (who knows what the drug was doing silently) except perhaps anemia. I continued to have suppressed counts and wanted to know why and how to fix it. Getting off the drug, I felt, would fix it.

 

Also - my oncologist had nothing to do with my vitamin D supplementation or for that matter the Curcumin I take. My primary care physician who first discovered my severe low vitamin D status during a physical, suggested I supplement vitamin D to get my levels up. My oncologist and primary care physician are not a team. They don't cross paths or share information. I have to do that.

 

And so I have come to some preliminary conclusions during my research that vitamin deficiency creates a favorable environment for CML expansion and danger. Vitamin D is absolutely vital for immune health. It is also vital for normal cellular differentiation as well as DNA repair including forcing Leukemic blast cells to differentiate. And I was borderline accelerated blast crisis when I was diagnosed! There is a ton of research out there on the beneficial outcome of transplant patients and vitamin D status. Since taking vitamin D to high normal levels (between 50-70 ng/ml), I went PCRU, zero blasts, and so far - have been able to stay off Sprycel.

 

So, in summary, people should read and learn all they can - and certainly not follow blindly someone else's path. But to not share what I am doing and what I have achieved would be wrong. 

 

There is a study underway, http://www.vitalstudy.org/, that will put additional scientific rigor behind vitamin D and health (what level is ideal). The study won't conclude until end 2017. Most people should wait until then to know what best to do. I don't need to wait on the study.

 

And to repeat - I chose my path - my doctors did not choose it for me. I put my plan together. My doctors are not incented to do that. First - they can't afford to take the risk (i.e. thinking out of the box) and second, they are specialists and likely do not read outside their specific discipline. I am not going through my journey with medical approval. But they are curious and watching. It's still 50-50 in my mind whether my approach will work. Cancer is a nasty thing - mutations and all. But I do know that if my PCR starts to climb, I can go back on Sprycel and continue this marvelous journey.

[pammartin]

Michael,

 

I misunderstood some of your posts.  Thanks for clarifying.  We chose our journey and here we are.  If my levels start to rise, I no longer have a choice.

 

Pam

[scuba]

Michael,

 

I misunderstood some of your posts.  Thanks for clarifying.  We chose our journey and here we are.  If my levels start to rise, I no longer have a choice.

 

Pam

 

Neither of us do - eh?  Just keep your vitamin D level UP! and sprinkle some Turmeric on your food too!

 

To your continued PCRU!

 

Michael