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Moira88
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Date Joined Apr 2017
Total Posts : 6
   Posted 4/15/2017 10:20 AM (GMT -7)   
Hi Exqualis, so sorry to hear of your further complications, but I'm glad your feeling better now. Unfortunately, I had a "light" case of Guillain-Barre' syndrome about five years ago after a flu shot...it was a misery, and I can remember feeling like I had a 50 pound weight wrapped around each leg when I wanted to walk. From your description, it sounds like you had a worse case than I did, but with time I'm sure yours will go away completely. I had other health issues going on at time, but from what I remember, it took about two or three months for me to start feeling better. I had no permanent after effects from the GB, but it was really frightening at the time because I didn't know what was wrong with me. My medical nightmares have been orthopedic in nature with neurological complications from surgeries, but eventually everything healed even although my doctors were doubtful about how I would land up. At the time I just decided to calm down, tune out the negativity, and try to enjoy my healing process. That's sounds crazy, doesn't it, but it made things easier to enjoy the help of friends and family, to savor all of the delicious food brought into the house, and to take great joy from very small things like a visit from a good friend. Keep getting better, and I'm sending you prayers and positive healing thoughts...

straydog
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Date Joined Feb 2003
Total Posts : 15150
   Posted 4/17/2017 9:48 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 4/17/2017 9:53 AM (GMT -7)   
Moira, it's amazing you've had GB,too. I wish I could have a better attitude toward all my ailments like you had.

I admit to having a lonely sobfest last night thinking how I am missing my son's entire senior year of college, since my dealings with breast cancer started around the same time as Fall Semester started. No going up for Parents' Weekend, or for Homecoming (he goes to my alma mater). My sobfest was stupid and a waste of tears.

I do need to fill in the details of my rather serious GB that began approximately 3/28. But one of the side effects of GB is neuropathy in the hands, and it's all I can do to write this little bit. Hopefully tomorrow will be a better day.

Post Edited (exqualls) : 7/18/2017 3:54:30 PM (GMT-6)


Moira88
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Date Joined Apr 2017
Total Posts : 6
   Posted 4/18/2017 9:23 PM (GMT -7)   
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...

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 4/20/2017 2:43 PM (GMT -7)   
Moira, I love your attitude. I hope the family genetics for breast cancer continues to ignore you. You have enough that you deal with.

Okay, so when I originally woke up paralyzed and my closest hospital transferred me to the more prestigious hospital 45-60 minutes away that night, I was placed in a unit that seemed for people who had yet to be diagnosed. I can't keep track of all the tests I had over the next 11-12 days there, but they were incessant. I was heavily drugged with IV dilaudid, (like 20 times stronger than morphine), plus had oxycodone and OxyContin. I think the last 2 tests they did gave the diagnosis of Guillain Barre syndrome: a CT myelogram and a lumbar puncture. The myelogram was weird--- they put some kind of nuclear liquid in me and then tilted me on a table in all directions, even upside down, briefly, to spread the liquid around. Anyway, they were sure of the diagnosis after those, so we luckily got approved for "the best" rehab hospital around.

Oh, before I get into my rehab stories from my new hospital, I HAVE to tell the nightmare experiences at the hospital I have just left, but I am too worn out now. I'll just give a hint: think of the Jessica Lange "American Horror Story" TV series, this season called "Hospital"......

Post Edited (exqualls) : 7/18/2017 3:57:13 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 4/25/2017 7:00 PM (GMT -7)   
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)


straydog
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Date Joined Feb 2003
Total Posts : 15150
   Posted 4/26/2017 6:40 AM (GMT -7)   
E, I have heard of Guillain Barr but never knew anything about it. I went to the Mayo Clinics website & read up on it. I have to think the pneumonia & your compromised immune system made you a target for it to hit after reading over there. I could not find anything there about Taxol causing this. When you feel up to reading perhaps you can read about it there.

Sending many healing thoughts & prayers your way. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1680
   Posted 4/26/2017 5:07 PM (GMT -7)   
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/

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 4/26/2017 9:02 PM (GMT -7)   
Thanks everyone. I will read up on it soon, I hope. Or get an attorney to do it for me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15150
   Posted 4/27/2017 6:12 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/2/2017 5:27 PM (GMT -7)   
Thank you everyone for your healing thoughts, prayers, and research on Guillain Barre Syndrome (GBS). I am finally home after 5 weeks. I left my house thinking I'd return in a few hours and instead it was a few weeks. So far in this short paragraph I have made over a hundred typing errors which I then fixed. GBS paralyzed my fingers, by at least 50%. I drop things, all day. EVERY thing I do with my hands is severely compromised. I can hold on to nothing--silverware, pens, make-up wands and brushes. The list is endless. I desperately want to tell about the horrors of my 12-day stay at one of the best hospitals in Florida, but it will have to wait. Besides the hands problem I am also paralyzed in my legs. I am relearning how to walk.

I have an appointment in about ten days with the neurologist who finally diagnosed GBS as it is he who will decide when I can return to my cancer treatments. I hope this huge delay between treatments ---I had 5 weeks of no treatment due to pneumonia just before my 5 weeks of no treatment due to GBS, I hope this huge gap in treatment doesn't worsen my chance for a full recovery from cancer.

I can't wait until the day I am only fighting cancer!!!

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

Post Edited (exqualls) : 7/18/2017 4:00:46 PM (GMT-6)


Moira88
New Member


Date Joined Apr 2017
Total Posts : 6
   Posted 5/3/2017 2:14 PM (GMT -7)   
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)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/4/2017 3:13 PM (GMT -7)   
So glad you didn't fall off the planet! Computer problems are, personally, the WORST. If they last more than a couple hours I just about become insane.

If your symptoms did not involve your hands and feet, then I don't think it was GBS. And I, too, had read about the link between cancer drugs and neuropathy in the hands and feet. In fact, the drug I was on when I first got side tracked by pneumonia, Taxol, listed neuropathy as a side effect. I made it through my first 5 (out of 12) Taxol treatments before I had to stop treatment due to pneumonia, and it was just as I was getting over pneumonia (after 5 weeks) that I first felt the start of paralysis. I told myself that the neuropathy from Taxol was finally catching up to me as a side effect so I didn't even mention it to my doctor that first day. But on day 2 when I was totally paralyzed from the hips down, I knew this was something much worse.

With a lot of hard work with physical therapy I have had a great deal of improvement, especially in my legs. It's my own fault I am not progressing more with my hands. The exercises to do for the hands are SOOOOOO much harder than the ones for the legs, so now that i am home and can pick and choose which therapies to do, I do not pick the painful finger exercises very often. But I MUST. Typing this message has been torture. It feels like it has taken 6 hours to type, fixing mistake after mistake. So as soon as I sign off I will be starting my finger therapy.

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

Moira88
New Member


Date Joined Apr 2017
Total Posts : 6
   Posted 5/5/2017 4:10 PM (GMT -7)   
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 ...

Moira88
New Member


Date Joined Apr 2017
Total Posts : 6
   Posted 5/9/2017 8:38 AM (GMT -7)   
Exqualls, Hope all is well and that you get good news from your neurologist...it's been a horrible few days for me. Over the weekend I received the sad news that my sister in Arizona has passed away from a heart attack. She had some heart issues, but this comes as a total shock to the family... I'll be heading out to the airport later today and plan to stay at least a month to settle her affairs. I just want you to know that I wish you the very best outcome with your GBS and chemo and that I'm sending you prayers and positive healing thoughts.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/10/2017 7:26 AM (GMT -7)   
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.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/10/2017 1:27 PM (GMT -7)   
I saw my neurologist today, who I was required to see before seeing my onc again and returning to my breast cancer treatment. He was very thorough and went over every test that was done during my 5 weeks in the 2 hospitals, and gave me a very thorough physical and he let me speak about all my concerns. Out of the 11 drugs I left the hospital with, he kept 10 of them the same but switched Gabapentin to Horizant, which is gabapentin mixed with something else to reduce the side effects of gabapentin.

I like it that he called my onc while I was there and they discussed my case. They agreed I would not continue with Taxol as that may have contributed to my GBS. However I won't know what new drug I'll be on until after I see her. As soon as I got home I called for an appointment with her, but due to a vacation the first appointment I could get was June 13.

So in the meantime I will work on my outpatient OT and PT.

I would like to comment that since my posts are longer my hands must be getting better, but nothing could be further from the truth. I estimate they are 80% or more paralyzed. Each keystroke is a major effort, and my hands are in EXTREME pain every moment of the day. I awake in pain and the pain increases throughout the day until I am nearly in tears by bedtime. Last night my hand pain woke at 3am and kept me up for an agonizing 3 hours. Of course the 80+% paralysis in my hands means I drop everything all day long, can't open things, or button or zip.
Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15150
   Posted 5/11/2017 6:53 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/12/2017 8:19 AM (GMT -7)   
Susie, thank you for thinking of me. I'll check into it with my neuro. I have a prescription for lidocaine patches that I use on my back, which ends up very sore from my leg PT. I had cut up a patch into 4 squares and put them on the front and backs of my hands, which worked a bit.

My onc got my visit moved up to this coming Tuesday, before she leaves on her vaca, so I am thrilled I don't have to wait so long to get back to chemo.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/16/2017 1:24 PM (GMT -7)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15150
   Posted 5/17/2017 11:16 AM (GMT -7)   
Woohoo, that is wonderful news. I am so, so excited for you. Finally, something positive happening for you. My limited experience with radiation was my mom had some fatigue which got better in time & she got a yeast type of rash on her back. The dr gave her a script for a salve type medication & it cleared it up in no time.

Sending healing thoughts & prayers your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/23/2017 7:57 PM (GMT -7)   
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.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/26/2017 3:29 PM (GMT -7)   
Okay, the hair on my head started to grow back when I started taking Taxol, which was the end of January, I believe. It reached about a half an inch after a couple months and has stayed there. My leg and underarm hair didn't start to grow back until about April......and wouldn't you know it, it's growing at the speed of light sad

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 5/27/2017 11:33 AM (GMT -7)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15150
   Posted 5/30/2017 9:17 AM (GMT -7)   
E, I am so happy that you will start the radiation. I hope that you find it much more tolerable than the chemo for sure. My mom did very well & from reading in the PC forum the guys said the same after chemo.

Glad to read you are getting out more yea!! Not sure about the chunky heels & a walker. Maybe practice in the house?

Short on time right now will write more later.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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