47 replies to this topic

[gerry]

Hi Vietnam67,

 

Sorry to hear that you've been diagnosed.

It is good to be on the right forum as there will be others able to help with your questions. The treatment for CLL and NHL is different to CML.

If you click on forums at the top and then LLS Blood Cancer Discussion Boards, it will give you a listing of all the forums.

 

Good luck on your journey.

[Trey]

Pin,

 

Gleevec does have an impact on how the body uses phosphorus and other minerals.  Here are a couple useful links to read:

http://www.gistsuppo...bone-health.php

http://www.davita.co...-disease/e/5306

(only the first 3 paragraphs of second link)

 

It is easy enough to get phosphorus through foods.  But the issue seems to be that TKI drugs can mess with a couple issues, one being the parathyroid gland, which regulates calcium balance in the blood, which has a secondary effect on phosphorus levels.  Have your doc check your parathyroid hormone (PTH) levels (not the same as the thyroid gland) since low PTH will result in low calcium.  Calcium and phosphorus do not directly cancel each other, but since the parathyroid's job is to keep calcium in balance in the body, which can also affect phosphorus levels, it will cause one or the other or both to be eliminated faster.  There is also recent information showing that phosphorus is regulated by FGF-23 which could possibly be inhibited by TKI drugs to some degree. 

http://en.wikipedia....rowth_factor_23

 

A vitamin that can help increase phosphorus levels is a specific active form of Vitamin D called calcitriol.  It helps the body increase both calcium and phosphorus levels.  I would try it.

http://www.nlm.nih.g...ds/a682335.html

[Pin]

Thanks Trey, I think that is a good idea - I'll ask to get a blood test for that. I think it has to be something like that - something is going on, it's not my diet.

 

In the meantime, I'm ordering some calcium phosphate, which hopefully will address both issues. Calcitriol looks like a prescription drug though, would a regular vitamin D work?

 

Gerry - I've not had vitamin D test for ages, probably at least a year ago. It may be low, but I usually do get out in sun enough even during our winter to make some, so I'm not sure Maybe if I just take the supplements for a short time?

 

I've had a couple of months worth of horrible tooth pain due to a cracked tooth (finally has been fixed!) so I feel like I might be able to concentrate on getting this sorted now.

[Marnie]

I can relate to the cracked tooth!  I have crowns on all of my molars because I cracked them all.  Too much stress and grinding my teeth 24/7.  Pin. . .monitor if you are clenching your jaws or grinding your teeth and get a mouth guard for sleeping if you are. 

 

Marnie

[gerry]

Hi Pin,

You could try your calcium phosphate tablets first as you usually only need 20 minutes of sun per day on your arms and legs for vitamin D..

Let us know if it is your PTH levels that are causing the issue, they could check out your vitamin D levels at the same time.

 

Glad you got your tooth fixed, not sure how you lasted that long with a painful tooth.

[Pin]

Thanks Marnie! It's a loooooooong (and boring) story, but the simple version is - yes I did grind my teeth sometimes during the day, but was asymtomatic at night until this tooth cracked during a recent filling. The rest is history, and now I have 2 mouthguards from two different dentists and a fancy new crown...Speaking of the crown, did it fix your pain permanently? I'm trying to work out what to expect, but I still only have the temporary one on. It's still a little bit sore when I eat on it. But I think it is getting better?

 

Thanks Gerry It's arriving today so I should be able to start on it soon. I guess I'll wait until I see the doctor next...

 

The tooth was a nightmare. My original dentist, who sold me the first mouthguard and told me there was nothing wrong with my tooth, also told me that most people would just put up with the pain and it's because I have all these other (waves hand dismissively around in a circle at me) issues going on, referring to my CML. Lovely. Needless to say, she is no longer my dentist.

[Marnie]

The permanent crowns usually do a pretty good job.  Glad you got it fixed. . .or at least almost fixed.  I hate the part where they pull of the temporary and put on the new.  But once the new is on, life is good.

 

 

Marnie

[gerry]

HI Pin,

 

I'm always amazed why some people go into the health care field when they don't really have empathy for people. Glad you've changed dentists.