Sharing my experience

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    • #15342
      Anonymous
      Inactive

      I am a 51yr old woman from the London, ON area. I was diagnosed Nov1/17 with a Uveal melanoma in my left eye. It was a shocking diagnosis as I was initially just at an appointment for a retina detachment that was being assessed for laser treatment. Within 3wks I was at Princess Margaret for brachytherapy surgery. I opted for the biopsy for genonomic testing, to determine my risk factor for metastasis prior to the radiation treatment, even though this is not covered by Ontario Health. It costs $1000. and takes 4-6wks for results. This was important to me, regardless of the outcome, to live fully and so that I can make informed choices about my treatment path. My results are not yet in. It’s been almost 3 wks since my plaque was removed and I am now in healing mode. (just in time for Christmas!)
      My experience and care at Princess Margaret has been exemplary, personable and highly professional. My surgeries were led and performed by Dr. Krema. I am really impressed with this hospital!
      My husband and I stayed overnight more than once at the Princess Margaret lodge. Thank goodness this is available as it is cozy and affordable, and close to the hospital.
      I am fit and active, walking, running, yoga, and work full time on my feet most of the day. I have 4 grown boys. No one expected that I would get cancer, especially me!
      This whole thing has been an incredible experience for me and my family. I am not a patient, I am the mom who had natural births 4x with midwives. I eat healthily and am a mindful person who believes in the universe. This is so out of my realm but I am dealing with it one day at a time.
      If anyone has questions I am here.

    • #15345
      Annette CyrAnnette Cyr
      Participant

      Hi Jane – thanks for sharing your experience. We actually have quite a few uveal melanoma patients that connect on this forum. One lady recently diagnosed had requested a support group be formed. Only issue with that is that people are spread out all over across the country. A great number are treated at PMCC as one of the centres of excellence, but difficult, as many travel in for that and have to turn around and go home. If you are interested, we can set up a web based meeting. Otherwise, this forum is a good way to connect. Sharing your story helps others – you have such a busy life and sounds like a very healthy one too – keep that up as it will help you along! I am sure you are anxious in different ways for the results of the genetic testing. Some want to know and others are comfortable not. We know of may who are living well with the diagnosis and are doing well health-wise. One day at a time is a good place to be. We have published our uveal melanoma booklet – hoping you received a copy at the clinic, but if not, our patient resources section has a downloadable version. We also have a peer support person for Uveal melanoma, in case you are interested in connecting. Let us know if we can help. Wishing you good results and enjoy the holidays.
      Annette

    • #15820
      Anonymous
      Inactive

      Hello Annette. I met you during your seminar here in Calgary in Novemberish. It was really worth going to. I was diagnosed with melanoma stage 2-3 13 years ago and went on a treatment of Interferon for a year. It was pretty horrific. However, I survived it. Unfortunately, out of the blue I got a lump again in front of my ear. I have been pretty vigilant at checking myself and seeing my dermatologist regularly. I am so confused as to which treatment I should be looking at now whether it be the target or immunotherapy drugs. I am in stage 3. In Alberta you need to be in stage for to have the immunotherapy drug covered, however, I did not want the decision made on the bases of cost. I would like to connect with people that are using these drugs and would like to hear their experiences regarding side affects, and how effective they feel the drug is and if they chose to have radiation first… Much appreciated, Judy

    • #15849
      Annette CyrAnnette Cyr
      Participant

      Hi Judy,
      I remember speaking with you! I am glad you enjoyed the session – we hope to improve the quality of our speakers for 2018.
      So you found the lump now and remain at stage III? Do they consider it a local recurrence and I gather they did not detect anywhere else? So, at stage III the options for approved adjuvant therapy still remain as interferon – which won’t be given again. We are waiting for the first submission in the adjuvant setting to be completed for one of the combinations of the targeted therapies – Mekinist and Tafinlar to be completed – it will likely happen sometime mid year, but then will take many months for review, and then has to go to provincial pricing negotiations. So, unfortunately, the first adjuvant drug combo, if approved, won’t be made available until likely late 2019/20 in my estimation.

      So your best option is to see if you can get on one of the adjuvant trials. Calgary doesn’t have a lot of melanoma trials running unfortunately – Edmonton does at Cross Cancer. What is your oncologist recommending you do? It might be worth a consult at Cross Cancer to see what they recommend as they do many more trials and see quite a few more melanoma patients. Head and neck is never an easy place to have any cancer show up and it also seems a bit tougher to treat when located there. You may want to consider a second opinion and see what options are there – and then see if there is a good option without having to fork out a lot of dollars – if that is an option (they still have to prescribe these drug therapies and currently you would have to have special access). My suggestion is that you try this route first – find out what they say – Dr. Walker or Smylie are top notch and lovely people on top of it – and then, get back to me and I can connect you with patients that have been on the various therapies and can give you their insights. Of course it is different with each person – what works for one does not necessarily work for another – this is the big mystery we need to overcome – how to identify what therapy will work for which person – but at least we have some options! Let me know what you decide to do Judy and if we can be of assistance, we certainly will. Best,
      Annette

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