Just checking in here. Angela, are you here & are you okay?

I finished #22 of my 33 radiation treatments today...only 1/3 left to go!

~Trudy

Dad died a horrible death from a rare brain cancer. Mom still fighting her own cancer.

I am not sure DCUM is a good place for a support thread of any nature. There are way too many horrible people out there. I was reading an old thread on diabetes and I shudder at some of the things people said...

19:18--were you also stage III? Why are you testing for mets--have you had symptoms, or is this a regular check? I will keep you in my thoughts & hope everything is okay.

~Trudy

Hi Rosa--sounds like you and I are in the same stage 3 IDC, node-positive boat (I had 22/25 positive). Nice to meet you but sorry for the occasion!

How are you dealing with the BMX recovery, plus the TEs? I've chosen to live flat (no reconstruction), so I don't have experience with TEs, but I found the BMX recovery better than I expected. How are you handling the drains? They're the worst part--I made my DH take care of them for me.

When you start rads, LMK if you have any questions. I'm halfway through my treatment--28 doses plus 5 boosts for a total of 33 doses.

Treat your affected arm gently, but (with your doctor's approval) begin doing stretching exercises as soon as you're able. I've typed up (below) the exercises I did twice/day about two weeks out from surgery. It'll be important for you to have a decent range of motion before your radiation treatment, since your arms will be up over your head during that process.

~Trudy

SHOULDER SHRUGS—5 TIMES
•slowly raise shoulders up toward ears
•hold for a few seconds and slowly lower

SHOULDER CIRCLES—5 TIMES
•slowly roll shoulders forward five times
•slowly roll shoulders backward five times

FORWARD-FACING WALL WALK—5 TIMES
•slowly walk fingers of affected arm up the wall
•let wall do the work
•walk toward wall
•push arm into wall
•hold for 10 seconds
•slowly walk fingers back down
•remain very controlled and slow
•never let arm drop

FORWARD FLEXION—10 TIMES
•lie on back and slowly raise arm to 90 degrees
•open and close hand while arm is elevated
•hold arm in place for 5 seconds
•slowly lower arm

INTERNAL/EXTERNAL ROTATION—10 TIMES
•lie on back and move arm away from body
•bend elbow to 90 degrees
•slowly bring forearm back toward head to point of stretching
•hold stretch for 5 seconds
•slowly lower forearm forward, keeping it bent

HORIZONTAL INT./EXT. ROTATION—10 TIMES
•lie on back with elbow at side and hand pointed at ceiling
•slowly roll forearm out away from body
•hold stretch for 5 seconds
•slowly roll forearm back to original position

DEEP BREATHING—10 TIMES (can repeat more often)
•inhale deeply through nose, allowing stomach to push out
•hold breath a few seconds
•gently and slowly breathe out through mouth, allowing stomach to sink in

Hi Rosa. I went through the same battle as you this year. I am waiting right now to get test results to see if it has spread. I pray I am healthy and that you find the road to recovery also.

Hi All,
Thanks for this thread! I am unfortunately part of the cancer club too. I have stage 3 IDC with 5/12 positive nodes (ER+PR+HER2-). I did four rounds of AC and then 12 of taxol/Carboplatin. Just completed bilateral mastectomy with TE placement two weeks ago. Starting radiation in another couple weeks, followed by ovary removal (tested positive for BRCA1). Then I will do endocrine therapy for 5 years and possibly a clinical trial involving a parp inhibitor. Right now, I am still tethered to post-op drains and am hoping to start PT soon. My arm with the lymph nodes removed is quite stiff and painful. It's so nice to find support on this thread!! Oh, and my name is Rosa. Thank you!!

Praying for all of you. Such a horrible disease and I hope you can all kick its ass. Stay strong and brave.

Praying for all of you. Such a horrible disease and I hope you can all kick its ass. Stay strong and brave.

Neuropathy is awful, and many people don't understand how pervasive negative and life-altering side effects can be after cancer treatment. I second the recommendation to go to a pain clinic if you haven't done so already, and also see a neurologist for testing and treatment.

Sorry to hear about Ethan's cancer coming out of remission...very scary.

~Trudy

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

I had neuropathy. They put me on gabapentem. Reduced the neuropathy, but made me feel stupid. What worked for me was a combination of Acupuncture and lidocaine patches.

I am on gabapentin. It does not help except for sleep at night. Do you think I would need to put patches all over my feet? Did you neuropathy ever go away?

Maybe you can try lyrics, or have the dose increased. In my case, they helped the neuropathy, but the side effect was to make me stupid. Patches on the feet might be harder. My neuropathy was in my abdomen. Definitely helped there. I also would consider acupuncture. I was extremely skeptical, but tired it, and it helped.

The only think left is the strong (narcotics) are really good for neuropathic pain. But, the risks there are huge. Mostly in addiction. Find out if your oncologist is associated with palliative care/pain clinic.

Thanks. Did you try lyrica?

Yes. But, I still had cognitive impacts.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

I had neuropathy. They put me on gabapentem. Reduced the neuropathy, but made me feel stupid. What worked for me was a combination of Acupuncture and lidocaine patches.

I am on gabapentin. It does not help except for sleep at night. Do you think I would need to put patches all over my feet? Did you neuropathy ever go away?

Maybe you can try lyrics, or have the dose increased. In my case, they helped the neuropathy, but the side effect was to make me stupid. Patches on the feet might be harder. My neuropathy was in my abdomen. Definitely helped there. I also would consider acupuncture. I was extremely skeptical, but tired it, and it helped.

The only think left is the strong (narcotics) are really good for neuropathic pain. But, the risks there are huge. Mostly in addiction. Find out if your oncologist is associated with palliative care/pain clinic.

Thanks. Did you try lyrica?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

I had neuropathy. They put me on gabapentem. Reduced the neuropathy, but made me feel stupid. What worked for me was a combination of Acupuncture and lidocaine patches.

I am on gabapentin. It does not help except for sleep at night. Do you think I would need to put patches all over my feet? Did you neuropathy ever go away?

Maybe you can try lyrics, or have the dose increased. In my case, they helped the neuropathy, but the side effect was to make me stupid. Patches on the feet might be harder. My neuropathy was in my abdomen. Definitely helped there. I also would consider acupuncture. I was extremely skeptical, but tired it, and it helped.

The only think left is the strong (narcotics) are really good for neuropathic pain. But, the risks there are huge. Mostly in addiction. Find out if your oncologist is associated with palliative care/pain clinic.

A close family member has advanced pancreatic cancer. Horrible.

Anonymous wrote:

Anonymous wrote:09:15/ my neuropathy is so bad I feel like I am being stabbed with knives in my feet and up and down my legs and I can't walk.

I had neuropathy. They put me on gabapentem. Reduced the neuropathy, but made me feel stupid. What worked for me was a combination of Acupuncture and lidocaine patches.

I am on gabapentin. It does not help except for sleep at night. Do you think I would need to put patches all over my feet? Did you neuropathy ever go away?

Ethan has osteosarcoma. Went into remission. Came back.... It's horrible.