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Posts (323)

Thu, May 21 11:34am · Lymphedema/Cellulitis in Skin Health

@rosy33 I'm sorry my reply is so late. I changed some of my settings on my computer to block some weird emails and now I don't get my Mayo Clinic updates, so I'm a little behind. I have not been able to find a lymphedema support group in my area either. It's a bit of a challenge but there is a lymphedema national support website. They may have some resources there. I am seeing a Physical Therapist who specializes in lymphedema and in the past I had a lymphedema massage therapist. As soon as the virus quits raging I hope to get back to some regular massage therapy in addition to my PT. I highly recommend regular massage therapy. It helped me a great deal when I was first dealing with this and then I backed up (bad idea). Lymphedema is a bit sneaky in that it seems to resolve and you think you're ok but it requires on going management. I learned that lesson the hard way. Good luck and hugs to you.

Sun, May 17 12:36pm · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

Posting some good news for a change (well, I hope). I have my FIVE YEAR post mastectomy check up in early June. Due to Covid 19 it will be a phone visit for now. Not sure how that will go exactly. Anyway, I believe that I will find no recurrance of my cancer and that means checkups once a year instead of every 6 months. So, a happy milestone is about to be passed. It will be seven years since my diagnosis for Stage 0 LCIS. I wasn't able to use the AI drugs or Tamoxifen so perhaps I've gotten lucky on this front. Hope so. I am struggling quite a lot with damage to my hand and arm from lymphedema and the cellulits and sepsis I experienced last November. It's been an unexpected pitfall. So, my advice to everyone is…………watch for signs of lymphdema if they fiddled with your lymph nodes. I really thought mine was mild and well controlled and i wasn't careful enough (or just unlucky) and as I approach a time when I could be completely happy at Five Years I'm about 'half happy', ha ha….But…….it's possible to make it through this without the AI's (so far). Hope this helps someone out there to feel a little better if they can't tolerate the pills. Hugs.

Thu, Apr 16 11:41pm · Deciding whether to have diagnostic sentinel lymph node removal in Breast Cancer

It's a tough road. There are doctors who listen and who will treat you concerns with respect and there are those who aren't good at that. I am on my third oncologist now too and he is great. I was told I was worrying about nothing when I brought up lymphadema prior to my surgery. They were pretty certain I was early stage cancer (which I was) and that few lymph nodes would be removed and tested (which was true)…but the surgeon dug around a great deal to get that one lymph node and it caused lots of damage. If not for that, I may not have gotten the lymphadema and the subsequent cellulitis and sepsis a few months ago (that's not something you ever want to experience). I think the thing that bothers me most is that I wanted information and the lymphadema classes prior to surgery to know what I could expect and I was denied that information. Following surgery I was told over and over I didn't have lymphadema and I had to secure and pay for my treatment for a year before they would believe me it was happening. After the cellulitis and sepsis (some four years post surgery) they act like I should have known all about how bad my lymphadema was…..hmmmmmm. I was unlucky and most people I know with lymphadema had multiple nodes removed and tested. Cancer – the gift that just keeps giving…. Hugs and remember…..I was probably the outlier in my situation.

Thu, Apr 16 4:37pm · Deciding whether to have diagnostic sentinel lymph node removal in Breast Cancer

Good luck to all with these difficult decisions. My story is on the negative side, so please consider that I am just one person and one experience. I had LCIS in my left breast, followed by invasive lobular cancer in my right breast two years later. I opted for bi lateral mastectomy and during surgery my lymph nodes were tested. Just two on the right where there was invasive cancer and only one on the left side. My nodes were clear and I considered myself very lucky. Unfortunately during surgery the surgeon created a lot of damage to my lypmh system on the left side and I developed lymphadema in my left arm and hand. It was mild (it seemed) and resolved after a revision surgery a year later. But, it didn't actually resolve at all. I got a small cut in Nov 2019 on my left hand ring finger and I ended up with cellulitis and sepsis and was hospitalized for 6 days. My hand continues to be very painful and isn't fully functional now and I am in active treatment for the lymphadema again. Now my lymphadema is considered a serious threat to my health (and was……sepsis, very scary).
If I had to make the choice whether to allow the lymph removal, knowing what I know now, would I? I don't know. I would still want to know if the cancer had spread so I could plan cancer treatment but my arm and hand are now damaged and painful and there is no really good treatment for lymphadema.
I was very concerned about lymphadema going into the surgery and I felt that the doctors dismissed my concerns and I had to fight for information and care. I have three close friends who have had breast cancer and bi lateral mastectomies and they all have some level of lymphadema, so it's not as uncommon as doctors may lead you to believe. It is the only way that doctors have to determine the real spread of your cancer however. Hugs and good luck.

Fri, Mar 13 12:57pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

@merpreb Thanks for the Covid discussions. I've found some of the best/most complete information right here on my group discussions and appreciate it. When we're all dealing with multiple health issues I think we become some of the best researchers and advocates out there. I appreciate the time and effort everyone has made and it has helped me.

Wed, Mar 11 8:32pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

Thank you so much for posting this. There hasn't been much information on the general news,etc….this helps a lot to understand this virus and even helps to know what to look for in the way of symptoms and progression. Appreciate you posting this.

Mon, Mar 9 11:07am · Side effects and benefits of Gabapentin in Chronic Pain

This is my first post in Chronic Pain. I am posting for my husband who just had a terrible reaction with gabapentin last week. He was on a very small dose for two years (100mg a day). It wasn't doing anything for his pain so they had me move it up gradually over a few weeks. When we hit 900mg he became very aggressive and we pulled it back to 600mg and then he became someone he 'wasn't', very aggressive, violent, wanted to commit suicide, etc…..all the horrible things you can imagine. My husband has peripheral nerve damage pain (I guess) in his feet from an accident 50 years ago. He also has cancer and COPD. Generally he feels awful but he doesn't have nerve damage from cancer because they can't identify his cancer type (he has cancer of unknown primary). His cancer is not being treated and is not growing. It's a very difficult and frustrating situation because it's been almost impossible to treat.
I thought that his decline in health might be improved if the doctors could help him with the pain. We have the COPD in pretty good shape and we monitor the cancer activity on a regular basis, waiting for answers. Well……….gabapentin was a horror. Now they want him to use Cymbalta instead of the Celexa he's been using for anxiety and depression for many years without incident. And what about this Ketamine? Does anyone have any insight on that? I don't want to put my husband or our family through another 'gabapentin' incident and risk my husband taking his life. The doctors won't prescribe narcotics due to the COPD and keep offering these drugs that alter brain chemistry. That seems sketchy to me at best but????? If anyone can offer some support, I'd appreciate it. I am going back to the doctors today and hope to get some clarification but they aren't even taking responsibility for the gabapentin being a bad idea, so……..I'm losing hope they can or will help. (p.s. I am unfortunately pretty saavy with medical nonsense as I've had breast cancer twice, my husband has been seriously ill for several years and I just had a horrible experience of sepsis this last fall………but it's still hard to get any respect or support from our doctors. We're with Kaiser so our choices are limited with doctors, sigh).

Tue, Feb 25 2:41pm · Treatment for chronic epstein barr in Infectious Diseases

@kkathysan Thank you for your reply and all this great information! Unfortunately my brother in law died over 10 years ago in a car accident but he had sprung back somewhat from the Guillain Barre. For some (myself included) EBV really changes or diminishes your immune system. I still feel the effects and have to stay vigilant about what seem to be on going infections and issues. They all started with a very serious case of Mono in my mid 50's. Hugs to you!