About

Member has chosen to not make this information public.

Posts (297)

2 days ago · Cellulitis and Sepsis just released from the hospital in Skin Health

I will share what I learn once I have done the allergy consultation. I'm allergic to everything and that brings it's own challenges. I take no regular prescription medications and couldn't tolerate any of the breast cancer follow up drugs either. There are some pain meds I cannot take as well and I'm even allergic to……….the sun………yes, the sun. My hope is that the research into allergies and managing them will advance soon as my grown daughter shares my propensity for allergies.
The antibiotics I am using and very scary to me. I am tolerating this one now (Zyvox) but it is said to be at the top of the 'food chain' and kills MRSA and everything else (right now it's killing my stomach, sigh) but I'm managing that with probiotics as best I can. My fear and that of my doctors is that I will develop a resistance to even these antibiotics and I will have no options. I got the worst possible thing I could I guess. I tough out simple infections (or have) that require antibiotics all my life and try to get my immune system to work on it but my body certainly couldn't handle this one. I'm considering buying a large bubble and living in it – ha ha!!
Cindy B.

2 days ago · Cellulitis and Sepsis just released from the hospital in Skin Health

@mamacita Thank you so much for your reply. Once I was home and able to try and find more information on Cellulitis and Sepsis it was hard to find anything but the most basic information (and I need to understand my challenges to remain calm and focused). That is when I reached out to Colleen and she found you for me! I am a breast cancer survivor (four years) and developed mild lymphedema that I have been able to control easily, but it has created extra challenges for me with the cellulitis. I have been careful but something obviously slipped past me and I found myself with this horrible infection. It's very scary and so I feel for both your daughter and husband. I will be even more diligent now.
My extra challenge has been my allergy to almost all antibiotics. I was hospitalized and they found antibiotics that I could tolerate or where they could manage the side effects. I have been less successful while out of the hospital and have had to go to the ER for treatment twice due to allergy to the oral antibiotics. I will be going to the allergist again to see what my plan will be moving forward.
Although my sepsis was said to be 'mild' it was the most painful and debilitating thing I have ever felt. I developed problems with my heart, kidneys, platlettes and blood sugar while in the hospital. Of course my inflammation and infection markers were off the charts but it's all resolved now with the exception of my hand and arm swelling and a small abcess in my hand that was addressed yesterday with ortho and will be followed.
I am just now well enough and pulling my life back together to respond to your post BUT I read it right away and it gave me support and comfort and I thank you so much. I would like to stay in contact and learn from your experience and I welcome all of your suggestions.
Thank you for being there.
Cindy B.

2 days ago · Cellulitis and Sepsis just released from the hospital in Skin Health

Colleen, thank you for connecting me with these members who have experience with cellulitis and sepsis. As always, you are very helpful!
I had no warning, just a small cut and it evolved very quickly into sepsis. I only remember feeling a tiny sting of pain on my hand before bed and by 3am I was in big trouble. The lymphedema is resulting in a slower recovery and a more dramatic problem than it might if I didn't have the lymphedema. When I had my bi lateral mastectomies I was early stage and only lymph node was removed from my left armpit. However, there was surgical damage done and the lymphedema was the result. It was mild and I got both physical therapy and massage therapy and a sleeve for it. One year post mastectomy the doctors finally acknowledged the lymphedema (they said it was impossible and acted as if I was imagining the swelling…not helpful) and I had scar revision surgery to remove a large amount of tissue under my arm that was collecting fluid. Once that was resolved I had no more lymphedema symptoms until this cellulitis and sepsis. I have never worn my sleeve (not needed) but I will be doing that in the next couple of days on a regular basis to help resolve my hand swelling. Its important for all breast cancer patients to advocate strongly for information and treatment for lymphedema……I'm glad I did even though I really wasn't supported by my doctors initially.
I am using antibiotics but it's been very difficult for the doctors because the first line antibiotics for this are not available to me. Unfortunately, the antibiotics I have been and am using all carry "Black Box Warnings" for serious side effects and it meant a much longer stay in the hospital because it was hard for the doctors to get the right targets to kill the infection. I am going back to allergy for a consultation on what I can use in the future.
Thank you once again for all your support.

6 days ago · Cellulitis and Sepsis just released from the hospital in Skin Health

Two weeks ago I got cellulitis on my hand which quickly became sepsis. I was hospitalized for 6 days on IV antibiotics and was released on a long term antibiotic infusion. The recovery is very slow and a bit sketchy at this point because…..I am allergic to almost all antibiotics. Each one I try via oral pills sends me back to the ER with an allergic reaction. The infection seems to be improving but very slowly due to my inability to use the one thing I need – antibiotics. I have lymphodema in the arm/hand where is occurred. I thought is was mild but I think it was more of an issue than I realized (lymphodema from bi lateral mastectomy). Looking for anyone who may have experienced cellulitis and sepsis and might have some words of support or insights. I'm finding it hard to find any real information on what this might mean for my short term recovery and long term health. Scariest, worst thing ever…….

6 days ago · Concerned about the side effects of anastrozole in Breast Cancer

I have been an active member of this discussion for quite a while and so I thought I'd share here a new complication I am experiencing with my breast cancer 'recovery'. First, yesterday was my four year anniversary of my bi lateral mastectomy and I'll have my check up in December and hope that I am four years cancer free…..that's the good news! Unfortunately a little over two weeks ago I got cellulitis in my left hand (from a tiny, itty bitty cut) and I went into sepsis. I was hospitalized for 6 days on IV antibiotics and released on a long term IV antibiotic. I am allergic to antibiotics, so it's been a huge challenge. Every oral antibiotic they add to help my recovery (which is slow at best to kill the infection) has sent me to the ER with an allergic reaction.
The cellulitis is in the left arm that had some very mild lymphodema (that the doctors were very slow to acknowledge due to the fact that only one lymph node was removed during surgery). I thought I had the lymphodema in decent control after a scar revision surgery 3 years ago, but I think maybe not.
Anyone experience cellulitis or sepsis from lymphodema or? I'm finding it hard to get more information or support (and the doctors are of course focused on killing the infection and struggling somewhat). Looking for input wherever I might find it. Thanks!

6 days ago · Cellulitis and Sepsis just released from the hospital in Skin Health

I am looking for anyone out there who may have experienced cellulitis and/or cellulitis that became sepsis. I was hospitalized on IV antibiotics for 6 days and am now home trying to recover. I have an extra challenge in that, I am allergic to all antibiotics. Every oral antibiotic that I use sends me to the ER with an allergic reaction and the long term antibiotic infusion I received upon release from the hospital is doing it’s job but the infection persists. I am having a hard time finding much information on cellulitis online (beyond the basics) and am still under the care of the infectious disease doctors….but any insights or support would be very appreciated. This all started completely ‘out of the blue’ with a very tiny cut on my finger and turned very bad very quickly. I do have lymphodema in the arm/hand from a bi lateral mastectomy 4 years ago. I’m sure that is complicating issues but I really thought the lymphodema was very mild (?).

Mon, Nov 11 11:25am · Portal vein thrombosis (PVT) after breast cancer treatments in Breast Cancer

The AI drugs and Tamoxifen are notorious for side effects with many women. I think we all feel it must be 'just me'….but no. I also suppose that there are many women out there who never go on these support sites because they can take the drugs to no ill effect. It's not your imagination that these drugs can have powerful and disabling side effects. I was unable to take any of them but then, I have side effects from many, many drugs so I'm very limited. I was fortunate to be only Stage 1 and I'm 61 years old (almost 62), so that's quite different than 33 years old……My body has already given up the hormone fight. But the drugs don't only remove those pesky hormones……they do something else and I've done what research I can and I don't understand what else they do to our bodies, but sometimes it's just not worth the extra pain.
Since I couldn't take the drugs I lost weight, changed how I ate (although I was always a pretty good eater), added some supplements including Vitamin D, etc with the blessing of my doctors. The effect was ………….I have so reduced my hormones that now I'm having issues with having too little. I know…….really? In fact, I am now using a vaginal estrogen cream because my vagina is falling out due to atrophy. The hormone saga continues. The same doctors who wanted me to reduce my hormones are putting them back in now.
We're all different but the pain and side effects from these drugs are real for many of us. The decisions are hard, the journey is hard but everyone must listen to their own bodies and make peace with the trade offs.

Sun, Sep 15 12:05pm · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

Colleen, Thanks for posting this calculator. I hope all doctors are using this and I hope women will use it as an 'add on' to the other information they receive.