About

Member has chosen to not make this information public.

Posts (319)

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 · Terrible reaction to Gabapentin 300mg cap 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!

Fri, Feb 21 10:12am · LCIS: should I take Tamoxifen? in Breast Cancer

I had LCIS 6 years ago and then 4 years ago I was diagnosed with invasive lobular carcinoma. So, I'm that case where the LCIS might turn into invasive cancer, might not turn into invasive cancer……….mine became invasive cancer. For what it's worth…..the LCIS was in the left breast and the invasive lobular was in the right breast….so not really a continuation of the same original site. I will preface this with the following………I had a long history with fibroids in my breasts, cysts and hormone issues that dogged me my whole life. I'm just saying this because it's so hard not to panic when you get that first diagnosis. It's common for many people to get LCIS or DCIS and then never have invasive cancer. I opted for the bi lateral mastectomy because the cancer or potential for cancer was in both breasts and in fact post surgery the tests showed not only LCIS in the tissue and invasive lobular but also Ductal Carcinoma in situ (DCIS) and other things starting as well. I was unable to tolerate any of the AI drugs so I didn't have that advantage and still don't today. I'm hopeful that there will be new meds researched and available in the near future. I'm low risk for recurrance but I was also low risk for the LCIS growing into an invasive cancer…..so I try to stay on top of options and new information. I hope that clarifies things a bit. Hugs

Tue, Feb 18 11:19am · LCIS: should I take Tamoxifen? in Breast Cancer

I take Vitamin D (i was found to be extremely deficient when diagnosed with LCIS and that 'can' be a risk for breast cancer), I also take iron because for some reason I'm slightly anemic as well. I only take it 2-3 times a week as it can be 'too much of a good thing' they said. I also take Omega Chews and have been for years for heart health and dry eye, a multivitamin chew that includes minerals as well as the standard vitamin regimine, biotine (my hair and nails took a real hit in menopause) and grapeseed extract (oddly for tinitus…and it works!!). I take no other prescription drugs or supplements although I do use tumeric in my cooking to fight inflammation and I try to watch both sugar and salt closely. I really modified my diet after the LCIS diagnosis but should do better. I did lose 27 pounds over the course of my breast cancer 'adventure', which was a good thing. I vary about 5 pounds when I don't really watch my diet. You want to reduce fat because hormones are produced to some extent after menopause in your fat. I don't eat or use soy but I avoid it as much as possible (again some estrogen production). Oddly, my cancer was strongly estrogen positive. I never had much progesterone, hence lots of problems I'm just now sorting out. I now have virtually no estrogen, no progesterone and little testosterone (I have the levels checked). I'm pretty much drying up from the inside out, ha ha!! The low hormone levels have caused many symptoms similar to taking the AI drugs (I can't, bad reactions to all). Not as bad as the meds but dry skin, hair, nails, some joint pain is starting to appear, dry eyes, vaginal atrophy, etc. I just patch, patch, patch…but it's better than cancer!

Tue, Feb 18 11:08am · LCIS: should I take Tamoxifen? in Breast Cancer

I was the 'average' age when diagnosed with LCIS – I was 56 (I am 62 now). I was diagnosed with invasive lobular two years later at 58. You're right in the ballpark really. They have averages when things happen based on statistics but I think it's really not understood completely. This past December my Mom was diagnosed with DCIS at age 83………Had her doctor not felt something funny in a pretty comprehensive wellness exam, I don't know if my Mom would ever have known she had DCIS because they quit doing mammograms in older age women. Best to be really diligent with exams, treatment and follow up. I was hoping I wouldn't get invasive cancer (who doesn't right?) but I'm glad I found it early and treated it.

Sat, Feb 15 4:11pm · Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis in Breast Cancer

@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!