Just got the news!

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    • #12991
      Anonymous
      Inactive

      Just Got the News! Where to start?

    • #12992
      Anonymous
      Inactive

      My husband who is 54 years old woke up a month a ago with a golf ball size swollen lymph node just like that. He never felt it before….. He has since had it removed and came back as metastatic melanoma stage 3. This is all a shock as all of you know. He had just been to a dermatologist in November and he had nothing to report or remove, his CT Scan is clear, his eye exam is clear. He is having a CT scan of his head tommorrow and a PET scan. Could this node be localized? he has another surgery next week to remove more around the area they removed. We are in Ottawa and are looking for advise, apparently a new clinical trial being used in other hospitals will be available here by the end of the month. I am reading articles, protocols, natural alternatives, OICC recommendations, boosting his immune at home naturally to start. Trying to get as much information and advise from anyone that cares to share….. please. Hopefully this posts correctly to my topic as this is new to me also

    • #12995
      Annette CyrAnnette Cyr
      Participant

      Hi there,
      So glad you reached out. It is such a scary and anxious time when diagnosed, but even moreso when it just appears. Not uncommon, but nonetheless, very frightening. I would suggest as you are going along, to get copies of the pathology and medical reports and start a file of your own, so you can be well informed and have your records with you at appointments, should you have any questions or concerns. Our website has a section on diagnosis and what questions you may want to ask your doctor – preparing questions before an appointment can help you get some of the information you need. We also have downloadable resources – such as our guide book for patients – Melanoma – What you need to know. I can also email it to you if you prefer. Just send me an email at acyr@melanomanetwork.ca To also let you know, we have a quarterly newsletter full of updates, information and resources of interest to patients. You can register for it on the website or just let me know your contact info and I can have it emailed to you.
      To answer your question – yes, it the melanoma could be localised in the one lymph node. The pathology should be able to tell you that when they have finished with surgery and scans. It still puts him in a high risk category for recurrence, so he will have to be monitored closely for years to come. Let’s hope it is localised. If it has spread, there are some pretty good therapies these days. There are also clinical trials ongoing. We also have some patient support programs – a peer support where he can speak with another patient who has been through a similar path. As well, there is a support group in Ottawa where patients and caregivers can meet and discuss their diagnosis and share insights. Let us know if you are interested. It is early days and I am sure you are both anxious to get the results back – waiting is such a hard part of this journey. Feel free to post questions and we will get back to you and I am sure other patients will share their insights too!
      Annette – MNC

    • #13028
      Anonymous
      Inactive

      Greetings,
      I just wanted to let you know that there is hope. I too was diagnosed back in 2014 with Stage 3 nodular malignant melanoma which spread in 2015. I have been on a clinical trial of a combo Yervoy and Opdivo since last May and am currently NED (no evidence of disease). Sounds like you are heading in the right direction in getting your husbands body ready for the onslaught of surgery and treatment. The people at OICC are amazing. I met with a naturopath there who advised me on what i should be doing to prepare for my year long treatment. To the surprise of my oncologist i have done remarkably well on this trial in terms of side effects. I’ve even returned to work part time. I too am in Ottawa and so if either of you needs or want to speak or ask questions about what i went through you can email me directly at rbietlot@osgoode.ca. I am finished treatment at the end of June and just deciding on how to celebrate:). Stay positive, you got this. Kick that cancers butt.

    • #13291
      Anonymous
      Inactive

      May Update:
      Since my last post both the primary mole removal and the extra surgery removed 19 lymph nodes have both come back with no evidence of melanoma and all other scans etc and clean. We see the Oncologist next week and wondering what she will say or recommend. I am on the side of the fence that believes in building a strong immune and also being diligent with future consistent visits to the Dermatologist etc. I also believe strongly in building a healthy immune with diet, exercise and less stress and natural approaches with this new diagnosis. I’m not going to lie that I do not believe in the toxicity of immuntherapy Keytruda or radiation in this circumstance. Has anyone out there ever refused conventional treatment knowing the statistics and the dangers associated? I’m not saying that this is for everyone at all I am not a Doctor but just wondering if anyone has thought about all the other options out there? There is another world out there.

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