Good morning everyone! Thank you all for your suggestions. A little background on myself. I was first diagnosed in 2004. I was put on tamoxifen right away. Already having interstitial cystitis, which is a incurable disease of the bladder, I started having awful bladder pain after 3 months. I was taken off tamoxifen and things went back to normal. This is why I know it’s the Letrozole causing the problem. In 2013 breast cancer tumor in my spine. They removed the tumor and I was then put on fulvestrant and xgeva shots. They worked wonders for 7 years. It is now in my pelvis. I was taken off the fulvestrant injections and put on Ibrance and Letrozole in November of 2020. I keep saying I want to try cbd, so maybe this will push me in that direction. I live in Rhode Island so I am only an hour from Dana-Farber. Second opinion might be an option. In the meantime I see my urologist on Thursday to discuss my options. I just wish my Onc and urologist would talk to each other.
Once again thank you for listening and enjoy Memorial Day weekend
Lori-Ann🙏🏻
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I am convinced that Letrozole has done major damage to my nervous system. I have had internal tremors for thirteen months. I am now going to the third neurologist at Robert Wood Johnson/Rutgers and have finally met with a professional. She has implied that it may be from the chemo and/or the cancer drugs and is going to have further tests done. It feels so good to be with people that care. I say, beware of the Letrozole!
Are you able to facilitate this by add D’sking them to communicate with each other, prior to your next appointment? Send each an e-mail with the others contact info?
Sorry to hear that you have been thru so much but I do know the feeling, as iv'e been thru several treatments myself. I am presently on tamoxifen last couple months, before that it was taxol. Taxol was giving me too much neropathy. I like the idea of taking traditional treatment along side alternative, if the two don't cancel each other out. I think cbc helps with the pain, a professional who has alot of knowledge about it could probably give insight. Keep us posted, take care.
Sorry to read your post. I don't know anything about nerve cancer but I do take Oxycodone and it works very well. I hope it gives you some relief. I would check the Mayo Clinic and John Hopkins web sites for info on this. There may be something there. Sending good vibes.
I have responded well to the Fulvestrant. Though my bone mets have gone into remission I have been recently told I have small b cell lymphoma. The news came in yesterday. So I am in the research stage of how the Metastatic stage 4 diagnosis that was in remission will be treated with the new lymphoma diagnosis. This site is so helpful. Reach out. Someone will have a similar history. Sending tons of encouragement.
Sorry about the additional stress of pain and worry. It seems getting doctors to coordinate their specialties seems so sensical to us. Letrozole has only left me with numbness in my hands and tingling. Bone density test will let me know how my bones are doing. Oncologist sent me to genetic testing for a stomach issue. No cancer scare for my stomach but tested positive for PALB2. Like a kissing cousin to the BRCCA1 and 2. My biopsy is long gone so no way to tell if this mutation caused my cancer. 35% chance for ladies over 70. Can be inherited from mother or father. My daughter is being tested to see if she has it. Includes ovarian and pancreatic markers for high risk. Lucky I guess to know what my risks are. 3D mammograms and mri breast every 6 months. If anyone out there has the PALB2 mutation FORCE is an amazing site for solid help and information. I wish I had more to tell. Taking holistic supplements. Just learned I have pernicious anemia which doesn’t allow my body to make normal red blood cells or digest any of the B panel vitamins from my food. Including D3 too. Vitamins don’t work. Getting B12 shots every month for life. Cancer loves low B and vitamin D bodies the most. BUT for you I’m sending hope and prayers. Jesus walks with me. Don’t know where I’m going but I’m never alone. The sun is shining on you until it’s not so thrive in its warmth, darling. God keep you close. Diane
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