Looking for Information - Reclast

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Looking for Information - Reclast

Postby toadwright » Sun Oct 25, 2009 4:35 pm

Hi

I've had Lymphedema of my right arm since 1991 due to breast Cancer Surgery and Radiation.

My Dr. is suggesting a Bone Infusion {Reclast} for Osteroporsis. I'm really not to sure about this. I've read a lot of negative things about this drug. The side effects are many and I have enough trouble staying out of trouble with my arm now.

Has anyone with Lymphedema had this treatment and what was your experience with it :?: I've also had several bad bouts of {false} gout and the pain is unbearable at times so also concerned this drug may cause way more problems than I want to deal with.

If anyone has had this treatment I would greatly appericate any feed back.
Thanks for your time
toadwright
 
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Re: Looking for Information - Reclast

Postby patoco » Mon Oct 26, 2009 8:12 am

Hey Boatwright :D

Hopefully, some of our members have had experience on this and will share their personal info on how it effected them.

I can say though after reading up on this drug I agree with your concerns.

I am not a medical professional nor a doctor, but I can speak as a patient who has experience for bad reactions to drugs that have edema listed as a potential side effect.

I'm going to list the possible side effects that especially concern me as regards lymphedema.

(1) edema
(2) leg edema
(3) hand edema

I wish doctors would understand that those of us with lymphedema have an impaired lymphatic system and any drug that lists that many specific potential edema related effects can be disastrous to us. In your case, the concerns rise since from what you said you have arm LE.

(4) Dyspnea (shortness of breath) - 27 to 22.1% of users
(5) Pleural effusions (lung fluid) - 5 - 10% of users
(6) Respiratory infection - 10%

It is generally a wide spread belief that lung fluid withlymphedema is rare. however, since I have been posting my own running battle with this, I am stunned at how many lymphers have been writing me about their own lung fluid problem. Many have had breath problems for some time and the doctors didn't discover the effusion until way late when the condition finalyl got so bad something had to be done.

Plus, the list of antibiotics you can NOT take is rather extensive so at the same time you are creating a potential infection risk, the list of available antibiotics is very very short.

(7) Generalized infections - 5 - 10% of users - back to above comment on this.
(8) urinary tract infection - 14% of users

(9) Deterioration of renal function - obvious additional potential for edema if the body can not throw off fluids

(10) Proteinuria (excess of protein in urine) - lymph fluid, which is the fluid that collects in the interstitial tissues when you have lymphedema is full of waste proteins. I would really question how this drug is going to complicate that.

(11) Neutropemoa (inability of bone marrow the make white blood cells) - 12% of users. Again, concern about your ability to fight the infections which would appear to be fairly common with this drug as the white cells are infection fighters.

(12) Aggravation of malignant neoplasm - 20% of users
(13) Progression of cancer - 16.3% of users
(14) Metastases - 5 - 10% of users
(15) Osteonecrosis - So this drug that is suppose to safe the bones can actually kill the bone in cancer patients?

I can tell you as a cancer survivor myself, this scares the willies out of me. Using this on a cancer patient?

(16) Pain - Understanding the pain level you must have, they are going to give you a drug that has the potential to add to that?

Also, on the pain issue - I fought my doctors for years about being put on pain meds as I was terrified of the stories I've heard and of the people I know who became addicted after being prescribed pain meds. It finally got so bad that I relented a couple years ago. LOL...guess what? I'm still on the same dose as I started. As my doctors explained if you follow the strict protocol of doseage they prescribe, you should do quite well on that. So, think about it and see if perhaps they can try on on some type of daily pain med. I went from having pain bad enough to want to shoot myself to a very mild and very bearable pain level.

I found a list of 102 reviews at WebMd from patients and the comments from users also gives this a very negative rating for me. When you have a side effect risk factor as high as you do on this drug - and with the comments from users. I would have to say I want to give a thumbs down on this. i would really push my doctor for some other alternative that doesn't have this kind of list of potential side effects.

Just my thoughts - hope this helps! :!:

Pat
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Re: Looking for Information - Reclast

Postby toadwright » Mon Oct 26, 2009 9:05 am

Hi Pat


I want to thank you so much for the additional information. If some of these Dr.s would be willing to try out these drugs first they might see out point of view.

I don't need any more infections of any kind already allergic to penicillian. Had a lot of celluitius infections early on lately not as much I average at least one a year.

Waiting for my Dr. to call me back and to see if he found out any information about my concerns.
As of right now will wait it out and see what else is avaiable.

Thank you so much
:)
toadwright
 
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Re: Looking for Information - Reclast

Postby toadwright » Fri Nov 06, 2009 9:28 pm

Hi Pat

Just as I thought he's still pushing for me to have this drug treatment.

My numbers for aren't good I do have Osteroprosis and am at risk for fractures. Still not sold on the Reclast.

I told him I want to do more research. So if anyone knows of anyone whose had this drug infusion please let me know.
toadwright
 
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Re: Looking for Information - Reclast

Postby patoco » Sat Nov 07, 2009 9:09 am

Thanks for the note :)

I haven't found anything further either. I can imagine that this must be difficult to decide. Does he say exactly how long and what type of dose you would have to take?

Pat
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Re: Looking for Information - Reclast

Postby toadwright » Wed Nov 11, 2009 3:30 pm

Hi Pat


From what I understand it like a 5mg. dose given through an IV drip that takes about 15 mins.
May take longer since the only veins I have left are ones in my left hand, my upper arm is shot due to doses of IV antibioctics.
The infusion is once a year for 3 years.

Will diffently post if I do it and the side effects. I don't plan on it anytime soon don't want to reck the Holidays.
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