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Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis
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.
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I'm so sad your precious dear friend was treated in that manner ; if she's in that amount of pain ask whether she can cut out sugar i know your think what has that to do with her arm pain etc. ..
But please believe me this will help as would turmeric and ginger root dandelion root and coconut oil these are natural antibiotics and build her precious body up to fight any inflammation in her body , also pawpaw and beetroot juice , make smoothes with spinach etc. He also stopped all daily too( when you think about all those injections they give animals these days, so dangerous ( to cut long story short, they were not even giving- my precious dear an operation ,) they bought in a doctor from USA he didn't even give him 50?49 chance of recovery) my precious Son only had 30% of brian tumour he has turned his life around through lifestyle changes only 10% left. Hope this can help you guy's kind loving regards swift hug from England. Please let me know how she goes on dear feisty and friend huge HUG from England
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2 Reactions@fiesty76
If your friend has lymphedema of her arm and/or breast, the physical therapist can teach her breast massage. It's helped mine greatly. I had partial mastectomies and have been fitted for compression bras and also compression camisoles which are quite comfortable. With radiation to the breast, it can cause hard lumps/ridges, but again mine have been helped greatly with the breast massage. Unfortunately, some of the pain may be from cut nerves during surgery and that's probably why the gabapentin was prescribed. Important for your friend to remember is not to wear a shoulder bag on the surgical side or to have blood pressure or blood labs from that side. Hoping things go better for her. (If PT doesn't show self-breast massage, there are many YouTube videos with variants of this, but it would be better for PT to show proper massage techniques).
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3 Reactions@fiesty76 Please make sure your friend watches the lymphedema!!!! Following bi lateral mastectomy for breast cancer I developed lymphedema (despite only one lymph node being removed on my left side). The doctors behaved like I didn't have it and I had to fight for Physical and Massage Therapy but it really helped. I followed that with a revision surgery and my lymphedema seemed to have gone away, but I was very, very wrong! Just this past November I developed CELLULITIS and SEPSIS and was hospitalized with a life threatening reaction (sepsis) to the cellulitis. I was truly surprised because I didn't make the connection between the lymphedema and the cellulitis and eventual sepsis. Your friend should get a referral for Physical Therapy and massage therapy,compression garments and follow up diligently. I didn't this past year and I regret it. My left hand and arm may never fully heal and I am being very proactive now. It's nothing to ignore or downplay (as I can attest). The Physical Therapy can really help with pain management as well. I have some pain from the surgery but less because of the exercises I embraced just following surgery.
I took Gabapentin for shingles pain and it worked but it seemed very strong for me. My husband is on it long term for peripheral neuropathy in his feet and it helps some but not greatly. He tolerates it well (he is 66 years old). We are considering Ketamine for his pain. We have not yet so I can't give you any thoughts on that but it's what they are offering now for his pain. They won't offer him opioids due to his COPD because it slows breathing and he has a lung condition and mostly likely lung cancer.
Don't let your friend put up with doctors who won't or can't help. Get that second opinion.....always..........
Hugs and best wishes for your friend. You are a good friend to her!
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4 ReactionsThank 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!
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3 ReactionsAlways 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.
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3 Reactions@fiesty76
I'm glad you found some help in my first reply. I tried a sports bra, but they really don't help with the pain of lymphedema. The first compression bras I was given were by "ABC," but since I am very short-waisted the bottom band kept flipping up causing pain. I've since been fitted with bras and camisoles by WearEase. They are made with microfiber and are so very comfortable. Another reason for your friend to be seen by a professional is that I have also been given a "swell spot." These items are stitched so as to help the lymphedema move out - they are used underneath the bra. I had partial mastectomies on my second surgery. My health care company provides me 2 mastectomy compression bras per year and 2 compression camisoles every 6 months. I have seen the camisoles (which I absolutely love) online for about $65 US. When I wear the compression camisoles, I don't wear the swell spot - it's a cheat, I know, but my lymphedema of my breast is getting better and I actually feel like a real woman when I wear them! Looking forward to hearing a good outcome for your friend.
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3 Reactions@fiesty76 -- one other suggetion, Fiesty, for your friend. She needs to be very careful about getting scratches or scrapes on her affected side. When I do my gardening or if I know I'll be hiking in a brushy area, I wear a long arm protection sleeve made with Kevlar. She may also find them at a gardening shop. Even something simple as a bug bite/mosquito bite can cause a person sensitive to lymphedema problems. So since she has already had cellulitis, best to err on the side of caution -- not to be constantly afraid of hit happening, but being vigilant. All the best.
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2 ReactionsThank 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!
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2 ReactionsI had a lumpectomy and axilla node dissection (all lymph nodes under left arm) removed. A few months after I finished 40 radiation treatments I developed lymphedema in my left breast that was VERY painful. My oncologist originally thought I had developed an infection so he sent me to an infectious disease doctor. One look and he said you have lymphedema ! He referred me to a lymphedema clinic for manual massage that I did several times a week for approximately 6 weeks. The clinic was 35 miles away and a burden to go to but I did it. They recomended I get a lymphapress which I did to use at home. My insurance covered most of it. I uses as needed but it really helps to keep the swelling down in the arm and my chest area. I would look in to it. Has been very helpful to me. I am 6 1/2 years out now and have no issues. Use the pump only as need. The sleeve did not do much for me. Hope this is helpful.
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3 Reactions