On 7/1/2009
Ryalma wrote:
A month ago I finished with my 24 treatments of Taxol treatment and once a month with Pamidronate. My last scan showed that the disease in the liver and lungs is contained but my bones disease has spread to my spine and pelvic area(previously in my ribcage).
My oncologist has me on Letrozole(Femara) and monthly doses of Zometa(Zoledronic acid). I have only just started with Letrozole and had 1 dose of Zometa. I have so much pain in my bones and stomach that it makes me difficult to walk. It does feel as if I am suffering from rheumatoid arthritis. I am not quite sure if it is the side effects of Letrozole or Zometa. Both these drugs have similar effects.
Is anyone going through the same treatment and having similar effects? Or is there any alternative medication I can take to alleviate these effects?
I am 47 years old,but it feels as though I am 90.
With love
Ryalma
Dear Ryalma,
First, I am so sorry to read of your suffering. I am 69 though and can't imagine going through your scenario at such a young age. Although your youth may help you in fighting this dreadful disease. I have all of the above from mets in my femurs, pelvis, fractures in my hips and a break in my pubic ramus, to my ribs, spine, shoulders, neck and skull w four lesions in my liver and nodules in my lungs...........I know how tough this is...........BUT where are your pain medications???? I can't believe that they are letting you suffer like this w/o pain meds. I am on the Fentanyl Patch 150 mcg's and for break through pain either percocet when necessary and/or neurontin with iboprofin. If you don't like percocet because it can weird you out, the neurontin (gabapentin generic very cheap and just as good) with an anti-inflammatory over the counter is also excellent.
You must be on pain meds! It will help you fight and also help you live a more normal live and help with daily activities. I still love my gardening and vacuum, dust and do daily activities. To tell you the truth, my biggest problem can be fatigue more than pain as the pain is taken care of. Zometa is excellent! You should have been on this sooner. I am not familiar with all your other drugs and do not know if you are HER 2 Positive..........if you are, you should be on Herceptin.
I will be starting a new trial continuing Hercepting, but adding another drug that you mentioned with Pamidronate. I can't believe tho' that they haven't given you pain medication. Do not be afraid of it because it will really help you cope with the stress of the pain you are dealing with. I just really cannot believe that you are not on pain meds...........REALLY! Also I take a very low dose of the generic for Prozac (fluoxetine). .....10 mg and sometimes 5 mg to round it out to 7.5. A very low dosage of Prozac will help with the stress you are dealing with and also help you fight the disease. With a very low dosage you will probably not have side effects. If you do, either stop or try another drug. Some doctors have samples. Only an extremely low dosage. It will help with the stress and not swing you up and down like xanax or other tranquilizers.
Something else.........do not be afraid to get second opinions and change physicians. Also check out the web for clinics in the country that are traditional, but specialize like MD Anderson in Houston, or Sloan Kettering. Many have cheap to no cost housing. There is even one west of Vail in Edwards, CO. The name is something like The Shaw Cancer - - - -.........research Google. I'd check everything out on the web........BUT YOU MUST HAVE PAIN MEDS to help you cope. No kidding Ryalma, you've got a helluva fight ahead and if you don't have pain meds you'll be screaming crazy. Don't be afraid of becoming an addict..........focus on feeling well enough so that you can fight!
Really hope I've helped a little. I felt so bad reading your story and the pain you are in which I am so familiar with. Get pain meds, get rest, eat as well as you can, listen to music, and when you feel up to it take walks with a friend.
Love and blessings..............Barbara in Denver, CO
p.s. I'd be happy to talk to you if I could figure out how the whole internet planet wouldn't have my phone number. Be aggressive in talking with different doctors and second or third opinions. Also, if your finances are being affected, check with social security to find out what help is available to you in the way of disability/medicare.