new to forum, diagnostic mammo and ultrasound found large lumps

Hi E, I have been out of pocket for a few days & was glad to see a post from you. However, I am very sorry to read about what you are dealing with on top of everything else.

When you are up to it you can fill us in on the details later. For now, I am sending many healing thoughts & prayers your way. Take care.

Exqualls, I had many a sob fest too and my so-called "better attitude" only came many months after a really really bad attitude and when I started to feel better...after a nasty bout of GB that thankfully only affected my legs, and two major orthopedic surgeries, which had me in a hospital for one month and an extended care facility for another month. I was so happy to be on the other side of this ordeal and to be surrounded by my own four walls that I started to lighten up. Please don't be too hard on yourself, and remember that you are allowed to cry. There does come a point with illness, whether it be cancer or some other serious sickness, that you just hit a wall and have enough.
I think we're just starting to understand the genetics of cancer, but we still have very far to go. I have a very heavy family history of breast cancer, but so far it seems that I take after another side of the family with orthopedic and weird heart problems. Tomorrow will be a better day and in the meantime, I'm sending you prayers and positive healing thoughts...

I am healing very well from the Guillain Barre, except in the 2 areas I need it to heal most-- using my hands and being able to walk. I can barely do anything with my hands. I'll pick up a piece of paper with my left hand and situate it on the table, then grab a pen or pencil with my right hand, then start to write and realize the pen has fallen out of my hand and i didn't even know it. I can't tell if I am no longer holding something if I'm not looking at it. Proprioception it's called. Same thing is happening with my feet. From the safety of my wheelchair or walker i could make a huge effort to stand, with the safety of holding onto my walker AND my physical therapist holding onto me with a
belt around my waist. Without looking or thinking about doing it, one of my legs can just go off in any direction and down I would go-- if it weren't for my therapist. I've had my feet cross over each other, step on top of each other and I don't even feel one foot is on top of the other.

I'll try to write more tomorrow. If anyone
has heard of a connection between the chemo drug Taxol and Guillain Barre, please let me know. best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 4/25/2017 8:04:52 PM (GMT-6)

Exqualls, there is a LOT of information on this on the internet. I just did a search for it and pages of links came up. I opened one that is a site supposedly to a group specifically for this. You may want to check it out.
https://www.ehealthme.com/support-group/taxol-and-landry-guillain-barre-syndrome/

E, what I read about it was on the Mayo Clinic site & the two things that caught my eye was the compromised immune system & infections. They had some drugs listed but I could not find Taxol listed. Perhaps the site pmedic listed will shed some light.

We are all hoping you continue to improve, keep up the fight.

Hi Exqualls...bet you thought I left the planet...really serious computer problems here, and my passwords and IDs got so messed up, I couldn't even log into my accounts anymore. I needed a new cable to the motherboard in my laptop, and I'm so glad that's over. I've been reading your posts today, and it does seem that your finally making progress. My bout with GB was very mild next to yours, and I never did have any involvement of the arms or hands. Listening to you describe your symptoms, I feel that I really didn't have GB at all...

I really don't know anything about Taxol and GB, but I can pass on a anecdote about chemo affecting leg function...a work aquaintance from a sister company was in the process of having chemo for colorectal cancer. I asked her how she was doing, and she told me that the chemo had brought on peripheral neuropathy in her legs and feet and that this that was affecting her ability to walk and drive...she was going to move near her family in Florida. We lost contact after that, so I don't know if these matters ever resolved, but perhaps this would be another avenue for you to research.
Sending you prayers and positive healing thoughts...

Post Edited (Moira88) : 5/3/2017 3:24:17 PM (GMT-6)

Hi... I don't know whether you realize it or not, but your posts are becoming longer and longer, so you must be making some improvement where your fingers and hands are concerned. As for my bout with GB, it was a light one, but I had so many other health issues going on at the time that it was the last thing on earth that I needed. I guess you must really know what that feels like. Although I didn't have any involvement of my fingers, hands, or arms , my legs and feet were affected with a lot of weakness and an inability to balance. Although symptoms subsided in about three months, I had other orthopedic problems that still prevented me from walking, but here I am, I'm on my feet and I'm glad it's over... and I really hope that you get to that point too.

I'm just wondering if your doctors advised you to take any B vitamins while you're in the recovery of your GB? Vitamin B is supposed to help with nerve issues, so you may want to ask your neurologist about that. I didn't ask anybody, but I did start taking vitamin B6 and B 12 and can't really say if it helped or not or if I was imagining it. I'm so happy to hear that your legs improving so much, and I hope your fingers and hands are the next to follow.

Sending you prayers and positive healing thoughts ...

Omgosh, Moira, I am so sorry for the loss of your sister. Words do not suffice. I hope your memories of her help ease the pain. My prayers are with your family.

E, I am going to attempt to copy a paragraph here for you to read from the chronic pain forum. It may be something for you to discuss with the dr for your hands.


You may also want to look into compounded topical creams that combine lidocane, tramadol, amitripyline, and gabapentin - among other medication combinations. Compounding medications allows customization of medication formulations, upon the request of a physicians, to best suit a patient's needs. Ketamine and clonidine and dexamethasone are also possible neuropathic agents that could be compounded into a creme for application. CentralDrugsRx.com has a comprehensive listing of pain medication preparations that are possible via personal compounding. I would suggest visiting the web site and printing their contents of speciality formulations to review/discuss with any one of your MD physician providers. You might be able to find significant and specific relief with a customized compounded transdermal creme or patch.

The above paragraph was about people with neuropathic pain that the typical medications do not work well for. I immediately thought of you with your fingers & hands. The lady that posted this info is a licensed physical therapist who is no longer able to be a hands on therapist due to her health. She really has some wonderful insight. Anyway something to consider for those hands. I believe it was Moira that mentioned B12, my husband's dr has him on B12 daily. We both take it, we get the cherry flavored one that dissolves under the tongue. That is the kind his dr suggested. He has diabetic neuropathy in his hands & feet severely. I believe your husband has it too. I intend on looking into a compounds for him & have him take info to his dr to see if he will rx something. In the meantime, I do know they now make analgesics with lidocaine available OTC, may be something you could try. Comes in a tube & you could try rubbing it into your hands.

Please take good care of you & be kind to yourself. You have been through a lot with too many speed bumps.

Hugs & prayers being sent your way. Take care.

Yeah! Good news for a change! I saw the PA at my onc's office and found out I DON'T need to have any more chemotherapy! I see the oncology radiologist in a couple days and then soon I will start my 6 weeks of daily radiation. FINALLY to move ahead again with my cancer treatment!

Best of health and positive thoughts to all who are reading.

I had my appointment this morning with my radiologist for "mapping".....which I guess means planning exactly where the radiation beams will be aimed. Then I have my first round of daily radiation a week from today.

Although moving forward with my cancer treatment after what will be a 3 months delay makes me very happy, this dang GBS (Guillain Barre Syndrome) is so overwhelming. I get PT and OT 3 times a week, then have exercises to do at home, and it is very fatiguing, plus the GBS itself causes fatigue, and I hear radiation causes fatigue! It's hard to imagine having any kind of life. I remember when I was healing from my mastectomies and then later going through chemotherapy --(as long as my WBC was good), I saw my girlfriends quite often for movies, lunches, shopping, long walks. I know being in a wheelchair or using a walker isn't the end of the world, and that is not even the problem. It's the severe, stabbing PAIN and the burning that goes along with the paralysis that has me in a wheelchair or walker. Wanting to see people or go anywhere is the last thing on my mind.

I don't want to make this a GBS forum, but I just want to really let people know, who may be going through cancer, that life may deal you a really crappy hand and force you to deal with something even worse. And we just have to stay strong, think positively, meditate daily affirmations even if it's just for five minutes. And just keep going....like the energizer bunny... keep every appointment, do whatever "homework" to do at home.

Well, I am worn out. I am reduced to 2 finger typing and I still made a thousand mistakes.

Best of health and positive thoughts to all who are reading.

I am trying to get out more. Walking at all is a MAJOR effort. I've been doing slow laps (with my walker) around the interior of my house ever since I got home from my 5 weeks in the hospitals. Recently I added walking outside. The first time I could only go as far as my next door neighbor's mailbox. Now I can make it all the way around the block! I don't go alone; either my husband or a gf who lives down the street goes with me, to aid me when we get to curb or gutter or some other uneven surface. A trip around the block takes everything out of me-- like I just ran a marathon, all my muscles have been stressed to the max.

I've been to a restaurant one time. And yesterday my husband took me to a local store solely for the purpose for me to get some walking done in air conditioning.

The point of me saying all this is that I am starting to get out more, and a couple of my girlfriends have wanted to go to restaurants that normally I would be dressed nicer and I'd be wearing high heels. I have some platform style heels, and shoes with "chunky" heels.

Does anyone know if I can wear heels using a walker? I think the height of the walker can be adjusted, so that wouldn't be an issue.