Forum Replies Created

Viewing 15 posts - 16 through 30 (of 393 total)
  • Author
    Posts
  • in reply to: Neuropathy #68776
    msue5
    Participant

    I have neuropathy in lt leg from from 5 surgeries involving my leg and groin. I also have noticed I now have neuropathy in both my feet esp toes but may be due to Raynauds Disease. I have completed 4 rounds of Nivo.I was started on Neurontin and it helps a lot. After researching Neurontin and Lyrica I found info on stopping the drug and came across info about going through sever withdrawals even after very short time. I was never given any info on this from any of my Drs. My neuropathy is permanent so I will probably never go off it. I’m just giving you a heads up in case these are prescribed. If I had a do over I would still choose to do the Neurontin because I had excruciating leg pain for 2 years.But I would try Elavil first an older anti depressant that has been used for nerve pain.I was offered another choice which was an SSRI but turned that down. Apparently they have serious withdrawal issues also.

    Mary Sue

    in reply to: Update #68762
    msue5
    Participant

    I’m glad you found someone you can trust. As a nurse I never found a Neurologist I liked! When it cane time for me to choose one after neuro complications from Yervoy I found myself looking for the lesser of the evils. My appt lasted 15 minutes 10 of which were doing an EMG. It was exactly what I expected. If you like him and trust him he’s a keeper.

    Mary Sue

    in reply to: PD1/ipi…Progression before regression #68696
    msue5
    Participant

    When I did Yervoy in 2013 my only known mets were in nodes between aorta and esophagus. After my 2nd treatment all the nodes in my neck swelled to the point that they were starting to affect my swallowing and breathing. I also had 5 enlarged nodes in pelvis and another clump of nodes on clavicle. The nodes in my neck were huge and very painful. These were areas where there was no known disease. I started 4 weeks of radiation and prednisone and gradually they reduced in size. Yervoy was delayed but I was able to finish all 4 doses. It was believed that all neck nodes were destroyed. I have had 3 doses of Nivo and guess what? A swollen neck node was found. Only 1 so far. My Oncologist said he didn’t want to tell me but knew he had to. So in my case non malignant nodes swelled also. I have yet to know of anyone else this happened to and neither had my Oncologists. I hope this is the case for your husband. I was at risk for more complications due to Lupus. I received Yervoy at my local Oncologist under the direction of Melanoma Center. I was the first Yervoy patient at the practice and my Oncologist said since then his other Yervoy patients have been a breeze compared to me.

    Mary Sue

    in reply to: Diagnosed and angry #68653
    msue5
    Participant

    Welcome to the forum. I can help with some of your questions. .3 mm is a very low risk lesion. All the different features on your path report are good. When they say not identified they mean that feature was checked for but not present. A Sentinal Node Biopsy is indicated for leisons 1mm or above? The WLE will most likely not show any additional melanoma. The biopsy itself probably removed all the melanoma. As far as your dermatologist is concerned if they are not listening to you about concerns then maybe it’s time to find a new Derm. If I have a concern I always ask the Derm why he is not concerned and I get a answer about why and he has yet to be wrong. Scans , X-rays and blood test are not usually done after a thin melanoma. As far as your emotional distress you are not alone. Getting a cancer diagnosis is scary. We have all been there and know what you are feeling. It will take time but does get easier. This is the place where you can come to voice your fears and ask questions.

    Mary Sue

    in reply to: 5 years Stage 4 #68592
    msue5
    Participant

    Great news Erin! Good to hear from you.

    Mary Sue

    in reply to: Liver Mets #68326
    msue5
    Participant

    I was on high dose Prednisone 100 mg 3 times while on Yervoy but was a partial responder and remained stable with axillary nodes the only mets left. Unfortunately the nodes grew after 2 1/2 yrs and now on Nivo.

    Mary Sue

    in reply to: Doing my best to change survivor statistics #68612
    msue5
    Participant

    You definitely are an inspiration to all melanoma patients. This is wonderful news.

    Mary Sue

    in reply to: jimmy carter #68615
    msue5
    Participant

    I found it strange also but maybe they are not telling the whole story. I’m thinking maybe fatigue is an issue especially at age 90. It might have been a decision Jimmy Carter made? If this is the case I would hope his Dr would make a statement to that effect. I didn’t like the way his NED status was handled. It made it sound like a cure and sent a wrong message to the public. There are so many misconceptions about Melanoma and only giving part of the story is very misleading. I wish him well. He is a man I have always admired.

    Mary Sue

    in reply to: BRAF/Mek may be failing…already #68519
    msue5
    Participant

    I’m sorry for you both for this situation. It is a roller coaster ride and will be thinking of you and your husband. Let us know how things go.

    Mary Sue

    in reply to: Update re Dabrafenib/trimetinib treatment & advise request #68443
    msue5
    Participant

    Where is your joint pain? When I was on Zelboraf it was usually just 1 joint at a time but excruciating pain. But I have Lupus which gives me inflammatory arthritis involving knuckles, wrists, ankles and feet. If you tell me where I might be able to give some help.

    Mary Sue

    in reply to: Please Come! #68411
    msue5
    Participant

    Planning on it. My daughter is trying to get the team together but is very busy with 2 toddlers.

    Mary Sue

    in reply to: Raynauds #68400
    msue5
    Participant

    I have Secondary Raynauds due to autoimmune disease. It affects both my hands and feet. I was recently diagnosed with another autoimmune disease called Scleroderma. The Raynauds preceded my diagnosis of both autoimmune diseases by about a year. With the Lupus it only happened in very cold weather and was infrequent. Summer of 2014 it started happening more frequently and continued to worsen and I was just diagnosed with Scleroderma. I had it before my Melanoma diagnosis and now with my rt axillary node going from stable to doubling in size.??? Keeping warm is key. They say even keeping your core warm reduces attacks. I use a heating pad to keep core warm and also on my feet when necessary.

    Mary Sue

    in reply to: Update #68155
    msue5
    Participant

    I agree with So Cal. I was also going to suggest specific tasks. People do want to help. A few of my friends said they were so glad to be able to do something. They can’t take away your pain or your husbands disease but they can make your life a little less stressful.My 5 kids have all agreed that a list of specific chores really helps. I liked SoCal idea of turning it around and think about what you would do if the situation were reversed. We all know you wouldn’t hesitate to help. On the other hand I still find it hard to ask for help with anyone but my kids. I feel caught off guard when asked “What can I do to help”.

    Mary Sue

    in reply to: I need advice on radiation #68390
    msue5
    Participant

    Heidi

    I am glad that only one parotid will be affected. I received radiation to both sides but more on rt side due to large matted nodes above my clavicle. Had total loss of saliva at first but I have some now. The Radiation Oncologist told me any symptoms after 6 mos will likely be permanent. I must have tiny bit of parotid function because I don’t have total loss now. Just enough to be a real nuisance. I don’t blame you for not taking Ipi at that dose. If you have serious enough adverse effects it could disqualify you and you won’t have the option when you really might need it. A PET Scan is definitely a must. It will include every part of your body. Another option if you can’t get PET is to monitor nodes by ultrasound and continue Ct’s of chest, abdomen and pelvis or add neck to CT next time. That might give you peace of mind. Best of luck and let us know.

    Mary Sue

    in reply to: Update #68147
    msue5
    Participant

    Happy digging but don’t overdo! Too bad my husband doesn’t take my advice. 2 cars dug out and 2 to go. Husband daughter and Grandchild worked on and off all day but neighborhood still not plowed. So glad electricity stayed on! Be safe!

    Mary Sue

Viewing 15 posts - 16 through 30 (of 393 total)