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Viewing 15 posts - 1 through 15 (of 393 total)
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  • in reply to: Finally! #69902
    msue5
    Participant

    Thanks everyone. Had my PET Scan yesterday. No results yet except they did say they could see the muscle inflammation from possible Polymositis. Muscle Biopsy sometime in May. hoping to move to every 6 mos Scans. The Radiation is starting to concern me. 26 PET Scans,Cyberknife, Radiation 4 weeks, countless Ct Scans. There was no choice since I always had active but stable disease. The axillary nodes could not be palpated easily. Maybe a good topic for Webinar or blog. I can’t be the only one with concerns about this. Another great thing I’m celebrating is I have finally started to gain weight. Endo is thinking since Adrenal Gland has been stabilized with medication that my Thyroid is functioning properly allowing me to gain weight. I was down to 90 lbs. I would lose 2 lbs in a day at times even though I was eating every 2 hrs. I was drinking Boost like I really liked it! I think I disliked this so much because I looked sick for the first time.

    Linny thank you for your kind words. Hope you are doing well.

    Catherine Wasn’t your grandson diagnosed with Dermatomyositis which is Polymyositis with a rash?

    in reply to: Free Books! Until we run out: Melanoma Not Just Skin Cance #69808
    msue5
    Participant

    Catherine

    After reading the book I got in one of the auction baskets at Safe from the Sun I decided to donate it to my local library. When first diagnosed I could not find anything at my local library so I decided to change that. Pass it On! I haven’t updated in awhile and apologize but still having major issues and going through. more testing. I will update when I have more info.

    Mary Sue

    in reply to: GROIN DRAIN PROBLEMS #69744
    msue5
    Participant

    Leigh

    That tube needs to come out. I am a nurse and the only reason for leakage around tube(any type) is that it is clogged. My concern for you is infection. I think 6 wks is too long and the modifications done to it might even increase the chances of infection. Another possible reason could be scar tissue forming around the tube and narrowing it so no fluid can pass through the drain. I would “gently” tell the Dr you are concerned. Surgeons usually don’t take kindly to suggestions from patients or Nurses! My Surgeon accused me of being depressed when I refused radiation to groin following my CLND after I had a huge hole in my groin from infection and had to have a second surgery. The Radiation Oncologist said she wouldn’t do radiation even if I begged her. You can read some of my old posts from 2011 to see what happened to me from an infected groin. You are so close there is no reason to still have the tube esp since it’s not working anyway. You might get a seroma but that can be dealt with a lot easier than an infection. I hope all goes well.

    Mary Sue

    in reply to: My Update/Thanksgiving Wish #69584
    msue5
    Participant

    Just know we are all thinking of you and your husband and we will support you as you have supported so many of us.

    Mary Sue

    in reply to: autoimmune disease and immunotherapy #69559
    msue5
    Participant

    Hi Madeleine

    All of my problems came from Ipi that I had in 2013. I am now on Nivolumab and don’t know how that is going to affect my autoimmune conditions. It took so long for some things to crop up after a Yervoy then longer to get diagnosed with them. What autoimmune condition do you have?

    Mary Sue

    in reply to: Right To Try Laws #69448
    msue5
    Participant

    Some really good points I wouldn’t have thought of Jonathan. Definitely food for thought.

    I would have assumed that it was a no brainier but not so it seems.

    Mary Sue

    in reply to: UPDATES! We want to know how you are doing! #69248
    msue5
    Participant

    Had trouble posting but lots going on. I went to our house in SC an 8 hr drive 2 days after my last Nivo dose. My husband was not able to take time off so I went by myself. The day after I arrived I started running a high fever103 but no other symptoms except body aches and headache from fevers. I slept the whole time. The fevers would come and go and I figured it was the Nivo. I had been running low grade fevers on and off for months and also blamed on Nivo or the many autoimmune diseases I have been diagnosed with recently. After about 5 days I realized I wouldn’t be able to drive home and my husband had to rent a car and come get me. I had already talked to Onc and arranged an appt the day after getting home. They did infectious disease work up and discovered pneumonia so I started Levaquin and things seemed to improve but after3 days fevers came back and I was starting to collapse at times. Onc out of town so off to ER. I was diagnosed with pneumonia vs Pneumonitis. My fever was high and I had very low BP 70/30. Admitted to ICU and got tons of fluids, 3 different antibiotics. Still no cough, no shortness of breath just so weak. They did a TSH and it was high so ACTH was done and I was diagnosed with Adrenal crisis and Complete Adrenal failure. I had an appt at Johns Hopkins for an Endo consult so I was disappointed because the local Endo just dismissed everything. But I knew something was wrong for a long time. The local Endo wasn’t accepting new pts but my Onc pulled strings and got me in and tests were repeated after discharge. I think I have been in adrenal failure for a long time. My other issue is my CT of chest showed Pneumonitis in addition to pneumonia. My Onc wanted a Bronchoscopy done be caused they also found atypical nodules scattered around. The Pulmonologist said unnecessary because everyone who has pneumonia has Pneumonitis and it wouldn’t affect treatment. Onc said ok you are going to someone new. Now new Pulmonologist is arranging Bronchoscopy. We may have missed the boat on the Pneumonitis because I had already been taking steroids and it could have improved even if it was Nivo related. Both my Onc and Melanoma Specialist agree. If nodules neg and Pneumonitis cleared I will restart Nivo and if it returns I need another plan possibly TVEC or BRAF. Still on Prednisone and Hydrocortisone and I feel improvement already from Hydrocortisone. My muscle weakness is better and feeling stronger. Long post but I’m wondering how anyone feels about my plan of action. Am I crazy to continue Immunotherapy. I don’t want to use up my back up plan now. The adrenal failure is the likely cause of my inability to gain or maintain weight so looking forward to getting back to normal weight. Did anybody have weight loss with adrenal failure and regain weight?

    Mary Sue

    Mary Sue

    in reply to: Jonathon’s Story in the Washington Post today #69308
    msue5
    Participant

    Great article Jonathan. You are an inspiration to all and give the rest of us hope that we will follow in your footsteps. I am so grateful to the patients who participate in clinical trials so the rest of us can benefit from your efforts.

    Mary Sue

    in reply to: Research on why some fail PD1 drugs #69297
    msue5
    Participant

    This is not related but does anyone know the wisdom behind using the 10mg/kg dose of adjuvant treatment of Ipi. If I had been offered that I would worry that I would develop toxicities that would prevent further use if you progressed to Stage 4. I’m not talking about me specifically just a general question.

    in reply to: UPDATES! We want to know how you are doing! #69207
    msue5
    Participant

    Don’t want to burn more calories! Seriously though I have done PT 3-4 times during my journey from hell for strengthening exercises usually before a big surgery that I know will keep me down for awhile. I was unable to do anything with Abdominal Stress but did exercises to strengthen legs. I will give that some thought. I have worked with same Physical Therapist and he is great and more importantly knows my history. Just have to catch him up each time.

    Mary Sue

    in reply to: UPDATES! We want to know how you are doing! #69205
    msue5
    Participant

    I realize I haven’t updated in awhile but just haven’t had the mental energy to do so. I just received 8th Nivo dose and up till now have just been fatigued. This dose the fatigue and joint pain hit me like a brick wall. I was so fatigued I could barely talk above a whisper but better now. I am getting Nivo every 3 weeks instead of every 2 to hopefully minimize autoimmune effects. PET Scan after dose 6 showed slight increase in size and SUV of 2 axillary nodes plus a new node adjacent to others. I am sure this is still pseudo progression and will move forward and next scan late August. I am still battling with Thyroid issues and weight loss. Today I made contact with Johns Hopkins Endocrinology Dept and have appt in Sept. I have been battling with this issue since July of last year. Pituitary and Adrenals are ok. Endocrinologist is baffled and useless. When I saw him last time TSH was normal and he said no need for follow up and you can stop checking Thyroid panels.Thankfully my Onc didn’t agree and last TSH was 7 with normal free T4. Restarted Synthroid at lowest dose and like last time was severely hyperthyroid after 1 week so had to stop. Today I made appt with Johns Hopkins Endocrinologist for Sept and am working on Rheumatologist appt there and also may see Oncologist Dr Lipson who ran some of the earliest trials for Yervoy. I want to make sure I should still continue Immunotherapy due to autoimmune issues with Yervoy. Weight loss still continues and all Drs are saying cancer induced but I think Thyroid is the issue. I now weigh 92 lbs down from my usual 107-110 lbs. I look like the “Walking Dead”. I eat every 2 hrs that I am awake and also have 2 Boost Compacts every day. Sick of worrying about it and Im worried I am losing muscle mass which could be irreversible. Oh well enough whining for now! Hope everyone is doing well as expected.

    Mary Sue

    in reply to: Amy #69286
    msue5
    Participant

    Oh no. I am so sad to hear this. Amy we are all grieving with you. Just know you were one of the greatest caregivers I have encountered on here. Please take care of yourself and give yourself time to grieve properly. We are here if you need us.

    Mary Sue

    in reply to: Off To ASCO this weekend coming #68987
    msue5
    Participant

    Should I be worried about Radiation? PET Scan every 3 months since June 2010

    plus 4 weeks of radiation and also Cyberknife to neck.

    I know about pseudo progression in known tumors with Ipi and Anti PD1 but on Ipi all of neck nodes swelled and also multiple nodes in Pelvic region. These areas did not have Melanoma. Now with Nivo have 2 new swollen nodes in neck. Have any of them encountered this?

    Mary Sue

    in reply to: Information about CLND #69007
    msue5
    Participant

    With micro metastisis I would opt for ultrasound surveillance. CLND is serious surgery with the potential for major complications. I had many complications and am left with some lifelong issues. My 1 pos node had what’s called extracapsular extension which means the Melanoma had consumed the node and broken through the node and was present in the soft tissue next to the node. Looking back I wished they had just removed the 1 node and what was present in the soft tissue. If it had spread to soft tissue it was going to spread even with CLND and it did making me Stage 4. All other nodes were clear as is the case with most people. I did have serious Lymphedema but used compression pump instead of wrapping. I have no idea why but my Lymphedema disappeared except in warm humid weather. I know this is your decision but wanted to point out it can have serious consequences in some people. I wish you luck with this decision. It’s a hard one to make but whatever you decide we are here to help.

    Mary Sue

    in reply to: Meeting Frank and Matt in person! #68782
    msue5
    Participant

    I was there just never saw a good opportunity to talk to you. It was a great event and thank you for nominating my husband for the caregiver award. He is one of many great caregivers on this site. In my opinion that is a harder job than being the patient. We are allowed to break down but the caregiver must try to remain strong at all times. My heart goes out to all the caregivers.

    Mary Sue

Viewing 15 posts - 1 through 15 (of 393 total)