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Viewing 15 posts - 31 through 45 (of 393 total)
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  • in reply to: Update #68145
    msue5
    Participant

    Thinking of you and know this must be awful for you and your husband. How did your farm and family do with the blizzard? Wishing you the best.

    Mary Sue

    in reply to: Liver Mets #68269
    msue5
    Participant

    I had permanent nerve damage to my groin area resulting in severe nerve pain in lt groin and all of left leg. I received 3 spinal injections 3 weeks apart. The last was done in May and my pain has yet to come back full force like it was. Also started Neurontin which helps a lot because you are likely feeling nerve pain. Just be aware that it is really difficult to get off of it. It is not a narcotic but the withdrawl symptoms are supposed to be worse. But pain control is a priority at this point and you shouldn’t hesitate to do what you can. Pain can affect every aspect of your life and it needs to be controlled in order to get better. Also ask about Lidocaine Patches. They are basically harmless and I use them where I can feel the most pain. You can cut them up and use up to 3 patches at a time. They have been extremely helpful.

    Mary Sue

    in reply to: I need advice on radiation #68384
    msue5
    Participant

    I did forget that it was 10 mg/kg dosage. Why do they do things like that??? I would be hesitant also. Heidi you can look for my posts about the problems I have encountered but I already had an autoimmune disease. I’m not convinced about the radiation either but that’s my opinion. If you are going to lose all saliva production don’t think this is trivial. Mine has improved slightly but it is more than just a nuisance. You must carry water everywhere and be prepared to wake up coughing and choking from dry mouth. It might also change your tastes. There are a lot of things I can no longer eat. Very sensitive to salty things, no milk chocolate, no egg yolks, peanut butter. They are things that tend to coat your mouth and with no saliva it’s much worse. Try posting on Stage 4 and see if you get more responses from people that have had radiation to neck. But you have to weigh the pros and cons. I think the Medical Profession tends to overlook things they think are trivial but really affect your quality of life.

    Mary Sue

    in reply to: I need advice on radiation #68381
    msue5
    Participant

    Is adjuvant Yervoy not available to 3c patients? I thought it was and if so I wouldn’t wait to be Stage 4 to treat.

    Mary Sue

    in reply to: I need advice on radiation #68377
    msue5
    Participant

    Heidi

    My primary was on my thigh but metastasized to nodes in lower neck. I did not have a neck dissection and the Cyberknife was for these nodes. My radiation field for the Cyberknife was in the middle of lower neck which included the esophagus but not the salivary glands The standard radiation of 4 weeks was due to Yervoy swelling nodes in neck. It will swell any malignant nodes before they start reducing but none of the nodes were malignant. There were large visible clumps of nodes that were threatening swallowing and airway so radiation started. This did involve both sides of my neck. Maybe ask the Radiologist oncologist exactly where radiation field would be and you will have better idea of what complications could be. I was offered Radiation to my groin after dissection but turned it down due to possible worsening of Lymphedema. It’s a hard decision to make but only you can make it after weighing pros and cons and looking at others with similar situations. Let me know if I can help. Hopefully others that have had neck dissections will weigh in. I did get 3rd degree burns with blisters from 4 wk radiation, very painful but cleared up way faster than I thought.

    Mary Sue

    in reply to: Update #68142
    msue5
    Participant

    Even the advantage of having all my history in the computer would be welcome and maybe a referral would be easier. I honestly don’t know but am supposed to talk to my Rheumatologist on Monday if they are open. He has no problems with 2nd opinions. He sent me to VCU to an Immunologist at one point when my Lupus was not responding to usual medications and I was placed on Methotrexate which may have played a part in my Melanoma. I think my biggest problem is there is no time to go through my extensive history with all the specialists I see. My total history is complicated but I think it is all intertwined and if they don’t look at the full picture they don’t get it. I have no idea what symptoms are from my thyroid, lupus, melanoma or the possible scleroderma. My Rhematologist and my Oncologists do know my history but all the specialists look at only their piece of the puzzle and I am left with so many questions. One interesting thing I learned through all my research was that severe reactions to mosquito bites is related to autoimmune disease. I was always lucky and never got bit like other people and the first summer after Yervoy I started getting bit and having severe swelling and itching that lasted for weeks. Bad enough to take Benadryl so I could sleep. A new bite would start itching which triggered itching in all the previous places I had been bit some weeks old. Did anyone else that took Yervoy experience this? I am thinking probably good sign from immune system. This happened again this past summer and I had to quit sitting on my beautiful front porch where I practically lived in the warmer weather.

    Mary Sue

    in reply to: I need advice on radiation #68375
    msue5
    Participant

    I had Cyberknife to my neck and then standard 4 weeks radiation to same area. In the first year I had no saliva at all. Some has returned but still suffer esp when talking, in wind or really dry weather. My speech will get slurred when my mouth is dry. I always make sure I tell medical personnel that I’m not having a stroke esp after procedures with sedation when I might not be awake enough to tell them. Did the biotene route but everything I ate tasted like Biotene and I was not eating. I use lozenges called Med Active available on Amazon. They are great. I also got sponge mouth cleansers that I can use just to wet my mouth because I was drinking water every time my mouth felt dry and was up all night peeing. You will also get something called esophagitis which is no joke. It will feel like you are swallowing nails but only lasted about a week. You will be given strong pain killers for this.I also was told to start a reflux medicine about a week before starting radiation. The one good thing to come out of it was I learned to be a nose breather! If you have more questions let me know.

    Mary Sue

    in reply to: So confused! #68373
    msue5
    Participant

    Thanks for the advice. It’s a good idea esp if all this takes too long which I’m predicting it will. I was on Zelboraf alone before Yervoy and had a really rough time but the combos seem more tolerable. It was pointed out that PD 1 has less effect on endocrine system and less autoimmune conditions and hopefully Inwill do ok.Another thought I had was to do short course of steroids to calm things down before starting PD 1. I will discuss with Rheumatologist and Oncologist. I hate steroids. I turn into a witch but I could also gain some weight before starting treatment!

    Mary Sue

    in reply to: Update #68139
    msue5
    Participant

    Thanks Linny. After some more blood work is done by Rheumatologist to confirm scleroderma I will consider going to Hopkins. It would be nice to have all the specialists in one place. It’s been a nightmare trying to get all Drs updated and all the copies of lab work, scans etc. My Rheumatologist actually works for a Johns Hopkins Specialists located in Arlington, Va. I don’t know how or if they are associated with the actual Johns Hopkins. This was a recent change for him so I haven’t asked him yet. He had a solo practice but is nearing retirement and this was his way to ease into retirement. Good luck with the storm. We have about 6 inches so far. It’s beautiful and it’s coming your way!

    Mary Sue

    in reply to: Great reading #68050
    msue5
    Participant

    Matthew

    Funny I just read a review of the book you referred to yesterday and checked to see if my library has it. They don’t but I can suggest a purchase of it and they will order it and automatically reserve it for me. My own personal book service!

    Mary Sue

    in reply to: Update #68136
    msue5
    Participant

    Linny

    You go to Johns Hopkins right? I have considered going to Dr Lipson for an opinion who speaks yearly at the Melanoma Support group I belong to and I have great respect for him. If it turns out I have Scleroderma( see my new post) Johns Hopkins has a Center of Excellence for Scleroderma. I live in Warrenton Va and it would be a 2 1/2 drive which is very doable for me. We are expecting 30 inches of snow in our county. Where do you live?

    Mary Sue

    in reply to: Update #68134
    msue5
    Participant

    Catherine

    I am so sad about your situation and wish you the best in your journey. I can’t imagine the frustration and heartache you must feel. I went to Georgetown for Cyberknife and was very pleased with the care but a consult with the leading Melanoma Oncologist was a different story. Rudest doc I have ever met and being a nurse I have met my share!He couldn’t get my disc of PET Scan to work and threw it at me as he walked in the room! Started his lecture and I wanted to ask a question and he said when he finished I could ask questions even after I told him I have poor short term memory. Thinking of you Catherine and sending hopeful thoughts your way.

    Mary Sue

    in reply to: Mutations: Is Braf the biggie? Or NRAS? #68238
    msue5
    Participant

    Catherine,

    Do you know the answer to my question about some tumors being BRAF pos and others being NRAS pos or can one tumor show both mutations? If a tumor only shows NRAS pos would you then only do NRAS mono therapy? Or would you do both to possibly catch microscopic disease that might respond to both therapies. This new info is throwing a wrench in everything I thought I knew about BRAF inhibitors! Not to mention I thought I was through with BRAF therapy which I found very difficult. But now that it’s obvious the Ipi combined with my Lupus wreaked havoc on my immune system and needs to be straightened out before I can consider doing more Immunotherapy and that takes time.

    jawillet

    Are you saying they got enough tissue from needle biopsy for mutation testing?I wasn’t sure if surgery to remove node was done and that’s what yielded enough tissue? Thanks for your input on this. It seems we have similar questions!

    Mary Sue

    in reply to: Happy New Year To All! #68201
    msue5
    Participant

    Thanks Shirley but this week I want negative! Needle biopsy on Thurs for 2 axillary nodes that doubled in size. Then I will go back to positive thinking. It’s hard to stay positive all the time but then I think of all the things that I have lived to see. 2 more of my children got married, 2 more grandchildren born for a total of 8. The timing of my diagnosis and treatment options saved my life. If my diagnosis was just 1 year prior I wouldn’t be here. My metastisis were in a critical place between my aorta and pulmonary artery and would have invaded either structure. When I was diagnosed In 2010 I went to a Melanoma Specialist but also a Medical Oncologist to help sort out my dual diagnosis of Lupus and Melanoma. I knew this Oncologist well from work. He said he wished I had walked in his office with any other cancer than Melanoma. That’s how dismal things were just 5 years ago. My family is what keeps me going. One hug from a grandchild is all I need to remind me to keep fighting. Hope your year is Melanoma free and filled with good times. For everyone else remind yourselves that we are lucky to have all these options for treatment.

    Mary Sue

    in reply to: Mutations: Is Braf the biggie? Or NRAS? #68234
    msue5
    Participant

    2 questions 1) can they do mutation tests from needle biopsy? 2) Wonder if some metastisis can be BRAF pos and others not?

    Mary Sue

Viewing 15 posts - 31 through 45 (of 393 total)