Badges (1)


Member has chosen to not make this information public.

Posts (49)

6 days ago · Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis in Breast Cancer

Thank you Trixie. Before getting a call from friend's hubby Saturday morning asking me to come over, I printed out the great member responses and my replies to them up to that point. I'm not sure now which responses I've replied to and hope everyone posting will understand how much I appreciate each person's response. Will post an update of Saturday. Hugs!

Sun, Feb 16 8:44am · Seeking recommendations for a uro-gynecologist or urologist in Kidney & Bladder

Wow! Engelee, that is wonderful news! Thank you so much for sharing and big congratulations on your success!

Sun, Feb 16 8:26am · Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis in Breast Cancer

Always appreciate your responses, Trixie, and this is no exception. Smiles to you and thanks for your suggestions.

Just learned yesterday from friend's hubby that the cancer doc she is seeing is an oncologist but not the surgeon. She'd never mentioned that a diff doc did the surgery so I'd thought the same doc did both. Had begun to think that it was because her doc was a surgeon that he refused her referrals to p.t. or pain mgt. doc. Troubling behavior at best.

The second pt therapist told her to get a "sports bra" but gave no specifics so they bought one yesterday at an athletic store but doubt it is appropriate…tag is still on…and I agree that hers needs to be fitted by someone who knows. If you are in the U.S., can you share a brand name and who you saw for an appropriate fitting?

Doing a lot of research and just yesterday found a U.K. site that shows patient "how to" for manual massage and also exercises for upper arm with lymphedema. I agree that she needs professional guidance with any pt massage or self- massage/exercise and have started compiling a list of questions for her next doc visit. Thanks again,Trixie.

Sun, Feb 16 8:02am · Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis in Breast Cancer

Thank you, Swift, for your kind and helpful reply. Yes! I know that sugar can be inflammatory and have read of many who regularly take tumeric. I'm not familiar with the others you mentioned but we are open to exploring beyond what the U.S. oncologist will prescribe.

I'll be printing out each response to share with her for her consideration. We are both so grateful for this community of sharing pros. What helps one may not work for another but together we can share and learn as we explore better ways of living well with this most difficult condition.

As a Stage 3 kidney patient, I so agree that becoming proactive as patients and making lifestyle and diet changes can improve our serious chronic health conditions. Sincerest congratulations for your wonderful son's improvement!

Fri, Feb 14 10:34am · Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis in Breast Cancer

After a lumpectomy, lymph nodes removal, chemo and three months following radiation, my dearest friend of over 40 yrs began experiencing increasing arm pain. From research and suggestions here for pain relief, I printed out info. which prompted a visit to her pcp. He immediately referred her to the oncology surgeon.

When asked for referrals to physical therapists, pain mgt. specialists and/or pain meds, the surgeon told her he didn’t “do” referrals and told her that pain was “something she would have to learn to live with”. I was beyond shocked and disturbed at this.

Following that visit, her arm & hand began swelling and a red horizontal swath from under arm above scar tissue and across to breast appeared. The 1st p.t. her pcp referred her to, ordered very tight compression sleeves for her arm & hand.

While the therapist’s very light, gentle massage was soothing, she was told to wear the sleeve except for bedtime sleep. The swelling increased to the point that another visit to the pcp last week, gave her, at last the diagnoses of Lymphedema and Cellulitis. She was put on Gabapentin, 100 mg, 3x/day for the pain and on antiobiotic, Clindamycin: 300 mg/3x/day for the cellulitis (infection from redness).

Researching Gabapentin alarmed me especially because it is listed primarily as a seizure med and my friend was on seizure meds for several yrs ago because of seizures. I also read that it has serious side effects and is not to be stopped suddenly. None of this was told my friend.

What are other patients taking that help for MBC pain? The pcp referred her to a second occp. therapist who is approved for her ins. He ordered a manually adjustable sleeve and told her about a pump sleeve which costs $3,000.

While I’ve read that there is no “cure” for the lymphodema, surely there may be some meds that can help? Both conditions, if not treated can become very dangerous, can spread and become even life threatening.

I do not want to become an alarmist for my friend without more information. Any recommendations or sharing of what may be helping others here, whether meds, p.t., sleeves or other specialists would be so appreciated.

I would like to encourage her go to a different MBC specialist, if her pcp would refer, and maybe one connected with our teaching hospital vs the one with our private, large hospital where she has received all treatment to date. Could she get to another specialist without doc referral???

Any suggestions, recommendations would be so gratefully appreciated.

Sun, Feb 9 10:43am · Seeking recommendations for a uro-gynecologist or urologist in Kidney & Bladder

Hi, brr, I am sorry but not surprised by your lack of help from docs you've seen. Too many spend too little time with patients and while they are very adept at prescribing more tests & scans and prescriptions, many seem to be offended by patient's questions or requests for referrals. I now use this site before starting with any new physician and it has proved very helpful: www, I hope you'll persist in your search until you find a doc willing and able to help.

Sat, Feb 8 5:20am · Chronic bladder or lower abdomen pain in Kidney & Bladder

Just catching up on this informative bladder and UTI thread and once more, as is often the case from discussions by members, found it helpful.

Contentandwell, it must be dreadfully trying to have so much interrupted sleep by such frequent urination need wake-ups.

I so agree with what others reported that we must research to learn and share all we can as patients to best manage our chronic conditions.

It has become glaringly apparent to me over this past year how easily some docs dismiss our questions and concerns. So much faster for them to prescribe another test or antibiotic than to do their own research for help to treat the root causes of the condition.

Best to all who are struggling to find relief and help with long term painful conditions.

Wed, Feb 5 11:29am · Stage 3 chronic kidney disease (CKD): What specialists do I see? in Kidney & Bladder

Thanks for your response to my probably too long reply to basslakebabe earlier, Kamama94!

Just fyi, I drilled down a bazillion posts earlier to find your recipes posted here; I printed them out and use them frequently! Thanks for them as well as your many other helpful posts as well.