Osteoporosis meds

[Guest guest]

Chris:

I had a scan a couple of years ago after falling and cracking a couple of ribs.

It showed that I had Osteopenia which puts me close to Osteoporosis. My GP did

the test for Vitamin D and found that my level was very low. He prescribed 5000

IU pills which I took once a week for about six months. That brought my D levels

back to the normal range. I now take 2000 IU per day in over the counter

supplements. I also take the calcium. My Hem/onc  and GP see no problem with

this in regards to CLL. I wonder if the low Vitamin D is caused by CLL. There

are so many little things that occur as we age that might be related to CLL or

then again maybe not.

I am congratulated by my GP every time I have gotten a cholestoral test as he

says I must be eating the right things because my numbers are so good. However I

have read that CLL causes low cholesterol levels. Does that mean we are less

likely to die of a heart attack because we have CLL? This is a crazy cancer to

have. People that know I have CLL have been asking me for almost eight years how

I feel. I always tell them great which is the truth. But no one seems to

understand that a person can have CLL with no apparent symptons.

Back to your question, I would have my D levels checked with a blood test and

then if really low, I suspect your Doctor would prescribe a mega dose of D as

mine did for a few months at least.

Dave

________________________________

From: Randolph <cprandolph72@...>

; cll@...

Sent: Fri, January 7, 2011 6:31:39 PM

Subject: Osteoporosis Meds

 

I just had a dexa scan and my MD office called to say it

showed significant osteoporosis of my spine and I will see

my MD this coming week. I will soon be 57 and was dx with

atypical CLL in 2005 and remain well with no tx. needed so

far. I will be discussing tx options with the MD. I have

been taking 1200 mg of calcium with much Vit D 3 for some

time now and do exercise but it looks like despite this, I

am still developing osteoporosis. Does anyone know if any of

the meds are contradicted for someone with CLL or are they

Ok to take? Always something.

R

Adks NY and AZ

[Guest guest]

Chris

The subject of Vit. D deficiency was brought up on the list by Dr.

Furman and Koffman (who is an MD). That is what prompted me to

get my level checked. I have never seen anything that would suggest

anything other than that we should be very aware of our bone health -

that including Calcium, Magnesium, and Vit.D and doing what is

necessary to get and maintain those at a healthy level. If your doctor

recommends mega doses of Vit. D to get your level up you should have

the level checked regularly to insure not going too high, and then to

figure out the proper maintenance dose. I'm sure if I'm wrong one of

the good doctors will chime in.

Pat

[Guest guest]

Thanks, Pat. I just had my D level checked and it was quite

good. I take supplements of 1200mg of CA plus Vit D. daily

already, exercise and eat fairly well. I will have a

discussion with my MD this week, and will see what she has

to say. Thanks to everyone who replied. I appreciate

everyone's input and support.

Chris

[Guest guest]

None of the medications for osteoporosis would be contraindicated with CLL. You

should take the one that makes the most sense from the osteoporosis perspective.

It is important to remember that vitamin D is not just about bone health. The

Institute of Medicine report stated that 400 IU of vitamin D was sufficient for

bone health, but we do not know if the same is true for the other effects of

vitamin D. The report also did not address adequate vitamin D repletion for

patients already with osteroporosis. So if your level needs to be adjusted, the

osteoporosis expert will take care of that. Things could wait until March. In

the meantime, you could just start taking an increase amount of vitamin D,

perhaps 2000 IU daily.

Rick Furman

>

> I had my consult with my new primary MD here in my winter

> locale in AZ and I do have a 30%loss of bone density in my

> lower spine and 20% loss in my hips. I have been taking

> 1200mg of Ca with Vit D for many yrs,get lots of excercise,

> eat hi Ca foods etc so I am leaning towards tx. I have read

> re. the meds and cannot find anything re. the meds that

> would indicate there is any contraindication with taking a

> med and having it adversely affect my CLL.

>

> We are leaning towards taking one of the once per yr. IV

> meds. I was to have a consult with a osteoporosis specialist

> prior to making a tx decision but unfortunately he is out on

> a medical leave. I may get to see him late March but may not

> want to delay tx for that long a period. Is there anyone out

> there who has taken the iV meds for osteoporosis? Please

> email me back re your experience etc.

>

> Drs Furman, Hamblin, any opinion re. taking these with CLL?

>

> Thanks everyone,

> R

> Adks NY and AZ. Atypical CLL dx. 11/05

>

[Guest guest]

Thanks Dr. Furman. My recent Vit D level and CA were both

quite good but there is so much that is unknown re. both.

Who knows if they are actually getting into the bones or

doing what they are supposed to do. I get lots of excercise

and eat foods with CA.

R

----------------------

On Sun, Jan 16, 2011 at 10:24 AM, rrfman wrote:

> It is important to remember that vitamin D is not just about bone health.

[Guest guest]

Sorry if I am going on and on re. this topic but I am

feeling a bit anxious. One of the drugs I need to consider

is Forteo. It is not a biophophosphonate but is a

parathyroid hormone. It is the only drug that actually

builds bone as well as preventing it from breaking down.

I am wondering if it is stimulating bone cells to grow,

could it also be stimulating the CLL cells to grow? Also it

has a rare risk of causing osteosarcoma and I worry too re.

the 2ndary cancer risk we are prone to. I have already had

endometrial CA so I know I am at risk of dev. 2ndary

cancers. I am in a quandary. Dr. Furman, any comments?

Thanks,

R, Adks NY and AZ

[Guest guest]

There are no data to suggest Forteo would stimulate the CLL. Although, anything

is possible, I would feel comfortable recommending Forteo to any of my CLL

patients who require it for bone health. Regarding the risk of osteosarcoma,

while this is not my area of expertise, this was something that has only been

seen in mice. I would also feel safe recommending the Forteo in spite of that

risk given the potential benefits.

Rick Furman

>

> Sorry if I am going on and on re. this topic but I am

> feeling a bit anxious. One of the drugs I need to consider

> is Forteo. It is not a biophophosphonate but is a

> parathyroid hormone. It is the only drug that actually

> builds bone as well as preventing it from breaking down.

>

> I am wondering if it is stimulating bone cells to grow,

> could it also be stimulating the CLL cells to grow? Also it

> has a rare risk of causing osteosarcoma and I worry too re.

> the 2ndary cancer risk we are prone to. I have already had

> endometrial CA so I know I am at risk of dev. 2ndary

> cancers. I am in a quandary. Dr. Furman, any comments?

>

> Thanks,

> R, Adks NY and AZ

>

[Guest guest]

I DID take this drug for 15-16 months and it DID build up my bone. I responded

to the sender earlier, but decided this time to respond to the whole group since

it may be helpful to someone else. When inquiring with my oncologist,

particularly since Forteo has a Black Box warning on it, his response was that

the sarcoma was rare and the usefulness of this drug for my osteoporosis and my

future concerns with fractures, that it was worth trying. After going off the

Forteo I am now on Actonel, which too has concerns, though not that I am aware

of any CLL concerns, but of jaw deterioration concerns, so what is one to do. I

have been on Actonel for almost 4 years and my endocrinologist will probably

stop the Actonel after 5 years. Must be a magic number someplace?!? Although

he does want to wait for longer than that since he would like me to have another

bone density done before stopping, to see how stable I am. So that would mean

someplace around 6 years since I just had a BMD done this Fall. But if anyone

has further info on osteoporosis and CLL connection, or just osteoporosis drugs,

I too would be interested in hearing what you have to say. I am new to this

group, not to CLL but to this group. So look forward to reading what all of you

have to say. THANKS for the information that you provide to everyone!

Chris---I will respond to your e-mail shortly. Thanks for writing back.

Helen

[Guest guest]

In my humble opinion, it is best to post informational responses to the group

rather than just sending them to an individual as otherwise the group does not

benefit from the response. Of course there are private messages of

encouragement, etc., that don't need to be posted to the group. The strength of

this forum is the open sharing of information and experience. I am so grateful

that all of you are here and participating. I see friends dealing with other

illnesses who have nothing like the combined intelligence and concern of this

group. And special thanks to our experts. Perhaps it's the " chronic " nature of

our illness that makes this community truly a necessity .. unless a cure is

achieved, it will always be in our lives, sigh. As says, " We are all in

this together " . (However, here's hoping the research scientists in universities

and drug companies will change all this.)

Lynn

>