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April 7, 2014 at 6:03 pm #21912janesParticipant
I have had my cancer stage moved to 3B and been through 6 operations over the past 3 months. I did originally post in newly diagnosed stage 2 but have now had my ear amputated with a skin graft after 2 melanomas were removed ,both a Breslow of 4.5.
Radiotherapy was planned for this area but I have had a further ‘deposit’ removed from my scalp that has been confirmed as melanoma so this treatment is now not an option. As I understand that the radiotherapy was to prevent spread in this area only but with the new lump it’s too late.
I have just had repeat MRI and CT scans and await the results this week as to if I have spread elsewhere and move to treatment or if not become watch and wait.
This second option – even though I feel I should be positive as there would show no spread fills me with fear at the watch and wait
I have a list of questions ready for my results appointment but wonder if anyone else at this time has felt like life has frozen for them ?
I remain off work and just feel emotionally exhausted.April 9, 2014 at 1:49 pm #64040Catherine PooleKeymaster
This can be a terribly draining roller coaster ride. Where are you located? If you are still 3B then the systemic therapies wouldn’t be allowed unless it is unresectable. Can more surgery be done? If not, I would assume you could get one of the approved drugs, IPI or the braf drugs. Are you BRAF positive or negative? I would consider radiation and surgery in meantime and press for systemic therapies too.April 9, 2014 at 3:00 pm #64041msue5Participant I was Stage 3b for two years and having PET Scans every 3 months following a lymph node resection where the lymph node had extra capsular extension which meant the node was completely taken over with Melanoma and there was some spread locally in the soft tissue. I was not eligible for any trials due to Lupus. When my PET Scan showed spread to thoracic area my Oncologist said you don’t seem to be too upset about this. I told him today is the day that I knew was coming for 2 years and it’s here and I am actually relieved because life didn’t stop and now I have treatment options. There were different opinions about the Lupus and Yervoy since I already had a ramped up Immune system. One Onc was dead set against me taking it so I ended up taking Zelboraf for a few months but I had 3 squamous cell lesions that literally popped up overnight and had to be excised so no more BRAF FOR ME. Yervoy was more appropriate since I had low tumor load and finally all the Oncs agreed that I could take it. My rheumatologist had no problem with it. He did extensive research on it and it was his opinion I valued the most. So my point with this was wait and watch was really hard and I had a great response to it but Now I am showing Melanoma creeping back slowly. I will redo Yervoy or possibly PD-1 when it is FDA approved since my Lupus will exclude me from the expanded access. Stage 3 limbo land sucks! I find just writing about it here very therapeutic. You will get great support as many are in the same situation. I also had 7 surgeries in 2 1/2 years all due to Melanoma and surgical complications. I have to have an 8th surgery for a very large hernia but I am waiting till after the MIF Safe from the sun 5k. It is elective at this point and has to be an open method due to the location and I am dreading the thought. Hope this helps to know that you are not the only one having these feelings.
Mary SueApril 9, 2014 at 3:34 pm #64042PhillyRedParticipant
Regarding the issue of squamous cell carcinomas occurring with BRAF treatment, yes, that is a concern and an adverse event that is definitely BRAF-related. However, if the BRAF treatment you previously had appeared to be working for you, please consider, as another treatment option (always good to have a number of options), asking your oncologist about the possibility of treatment with a combination BRAF inhibitor and MEK inhibitor. There is evidence that treatment with the combination therapy mitigates BRAF adverse events, including the development of squamous cell carcinoma. I believe data shows that the incidence of new squamous cell carcinomas is decreased in patients treated with the combination compared with patients receiving the BRAF inhibitor alone.April 23, 2014 at 8:56 am #64043janesParticipant
Thank you for your comments but over the past weeks the disease has progressed. I have had a further scalp deposit removed and my scans show growth in my lungs,liver and bones. I am unable to have BRAF treatment as I do not have the mutation so have been offered to join a trial here in the UK – PACMEL trial. I have final tests tomorrow to check suitability and then will be placed on one of the 3 options randomly. All include Paclitaxel and you have that alone or with one of 2 tablets Pazopanib or Trametinib. Looking forward to getting something started to try and stop this growth as it has been so rapid. The scans showed nothing in December but to see them last week was a shock. Not sure whether this has progressed me to stage 4 but at least this trial means there is some treatment to try and help.
Has anyone else had these treatments or combinations?
A whole list of side effects but would be good to know if it really isn’t that scary.
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