October 13, 2018 at 10:06 am #18803AnonymousInactive
Some of you might know me, so far I have always been on the giving side of support but now I find myself looking for some. About 10 day ago I found a lump in my left inguinal basin where in 2010 I had RLND d/t positive SNB following LWD of 1.2 cm SS Melanoma on the left thigh. I saw my oncologist at Juravinski on Tuesday who has pretty much said, without pathological confirmation, this is recurrence. My family doctor, whom I saw on Wednesday, sent me for an ultrasound on the off chance it was granulation and so I could have a little piece of mind to at least know the size. The ultrasound confirmed it is not granulation but the node is 2cm. Knowing the size is relatively small gives me some peace of mind. Right now I feel like a babe in the woods. When I was diagnosed in 2010 Interferon A was my only option other than wait and see and Chemo was pretty much non-existent. I would really like to hear from anyone who has been thrown back into the jungle like I feel I have. Can you help me navigate these woods a little?
October 14, 2018 at 10:11 am #18805
Well, I saw you (I think) registered for the Mississauga walk and was hoping to see you there – we haven’t chatted in quite some time. And this isn’t the news anyone wants to get. Been there – and it can just take your breath away knowing that you are back in treatment mode. Certainly not the news you were looking for. They likely will confirm by biopsy and will send you for the full round of scans to rule out spread elsewhere, then determine best path for treatment.
But I am here to say a lot of progress has been made since 2010. We have numerous drugs fro metastatic melanoma, as you likely know, but I am hoping that this remains a localised recurrence for you. Good news is that all the drugs that are approved for metastatic are in the works for adjuvant stage III as well. They likely would not have done a BRAF test on you back in 2010, as that was still in trials, but they will definitely be doing it now to see if you have that mutation. If you do, then you may be eligible for targeted therapy – one of the combination therapies just received Health Canada approval for adjuvant (stage III) patients – so if you have private insurance, they may cover it. Provincially it will likely take a couple years. The other immuno therapies are just in the works for receiving Health Canada approval – it doesn’t take that long there, and the same would apply – private insurance from your employer may cover it. As well, there are a few clinical trials for stage III as well.
Not that all of this takes away the fright and fear you have with the return of disease, but I know for me, it is a comfort knowing that there is and will be some effective treatment options beyond interferon that work very well.
And of course, you are welcome to drop in and see me – the Oakville patient group meets the first Wednesday of each month – great, comforting, fun and supportive group of patients. I hope you can stop in to Wellspring to join us. And of course, call the office any time – if I or Charlene or any of the other staff can help, please done’t hesitate. Big hug and hang in there. You can do this.
October 15, 2018 at 11:35 am #18806AnonymousInactive
I had registered for the walk but picked up a shift at work and completely forgot!
Dr. Tozer has already ordered the scans, Based on clear scans, the care plan, from my understanding, is surgical removal with LWD, BRAF testing is in the process, adjuvant care plan to follow. Of course this is all based on clear scans. We do have private insurance so knowing that these treatments are now approved by Health Canada for Adjuvant Treatment is a relief.
I have reached out to Peer Support with the Cancer Society but as of yet have not made the right connection. Both gentleman are very nice but were diagnosed in 1993 & 2002, stage IV so fall in to that “miracle” group. That would have bee more helpful with initial diagnosis but now I am looking to connect with someone whose experience is a little more recent. I find the MIPP forums on MRF website very informative, with current stories, and helpful. The only drawback is it being American some protocols and therapies are different here. I appreciate your help and will keep you posted as results, and care plans develop.
October 16, 2018 at 10:56 am #18812
Hi there – well, I am sure you are anxious to get the information from the scans back. There has been an interesting change in the lymph node biopsy/dissection world. They used to do a full dissection of the lymph basin if more than a few nodes came back positive in the biopsy. Now, thankfully, they are no longer recommending the full dissection – which saves patients healing time an the possibility of a life long issue with lymphedema (all the fluid in the leg no longer has an easy way of draining, so patients can get some pretty horrible issues with lymphedema). Studies have shown that removing all the lymph nodes in that basin has no impact on overall survival rates. So if positive lymph nodes are confirmed, which sounds likely, at least you won’t have to go through another major operation – they will just look to start you on treatment therapy hopefully.
I think you knew that we have a peer support program? I thought you had volunteered for that at one point, but i may be mistaken (I may have you mixed up with someone else – too many people to keep straight for an aging mind!). Beth, we are quite able to link you up with peer support and likely have more folks and more recent patients that have had treatment and may be a better fit. I will ask Charlene to reach out to you (she is on vacation this week, but back around the 23rd) to get a better understanding of what may work for you. And always, feel free to join our patient group in Oakville, if you don’t mind the travel.
October 17, 2018 at 9:44 am #18816AnonymousInactive
Update and a not so little tip for all going through this nasty experience. Last Thursday, October 11th I called my cancer centre (Juravinski) to see if any of my diagnostics had been booked. I was told my CT was booked for Dec 11th. That did not fit with what my understanding of ASAP for diagnostics and pending outcomes, surgery in November, so I started making calls. I left a message for my doctor’s nurse with my concern, mentioning also that my hometown hospital has CT and the waiting time here is 12 days. In the next hour I received a call back that the CT had been rebooked for Oct 22nd. On Monday I was feeling a little out of control, I hadn’t heard when I would see my Oncologist again, when I would meet with a surgeon, when I could expect blood work results back, I had been told my MRI was again, in December, so I mad another call. My Oncologist called me back yesterday saying that the Radiologist was working on getting my MRI in the next two weeks, and that by the end of October all diagnostics would be done and we would have a treatment plan. I received this call while speaking with Annette, who so kindly offered to call and help ” talk me off the edge” This morning I received a call that they have an opening at 5 tonight for an MRI, can I make it? Well the answer was a resounding yes! Didn’t matter what I had to cancel I am going.
I now I feel I have a little control back, and my confidence which was non- existent Monday has returned. Our health care teams really do see us a people not patients but they see a lot of us. Like in any other industry sometimes communication can become filled with some static. There are so many people involved in your team that you will never meet or even know about. They all care but we all are human and if one person does not get the whole picture then miscommunication can happen. Never feel intimidated to call and ask if you feel you haven’t heard about anything when you expected to. Never be afraid to ask or let your team know you’re struggling. You are the sun in this universe and all the planets revolve around you.
November 29, 2018 at 7:03 am #19493AnonymousInactive
So here I sit. All the scans are back and clear of any distant metastases, BRFAF positive, Loco-Regional recurrence. Surgery is being booked, we had a little hold up there because the original sample taken in 2010 was “lost” . I can’t really say much, there was no BRAF testing at the time so it is, what it is. After speaking with my oncologist about the extended wait time now as opposed to 2010 and the anxiety it caused he proposed “crashing” my surgical appointment this past Tuesday. The four of us, Dr. Tozer, Dr. Heller , Dr. Heller’s surgical resident and myself went over all the options. Neo-adjuvant therapy then surgery, surgery with wait and see, surgery with adjuvant therapy using Dabrafenib and Trametinib and unanimously decided on the last. We all said “best to get it out”.
I have come to terms with having active disease again, even though I am for lack of a better word “pissed Off” about being here. My take is I was nine years NED with a protocol of Interferon hat had less than a 25% durable response rate. Now I have access to a protocol with an 80% durable response rate both times with disease that can be resected. I fully and pragmatically believe I will still be writing my story another 10 years from now.
January 23, 2019 at 10:01 am #22946bethharteParticipant
Yesterday was a good day! On January 7th I had another LND in the left groin to remove the mass that was found and confirmed to be BRAF positive melanoma and a PLND to remove an enlarged lymph node on the iliac. Surgery went well and yesterday I met with the surgeon for post-op follow up and path results. Her words were ” I’m shocked” all lymph nodes tested were NEGATIVE! She says this rarely happens and I believe her. The impact on my prognosis is substantial to say the least. I was hoping for under four “hot” lymph nodes but never dared to hope for none. I am on cloud nine. I will be starting Nivolumab in February as adjuvant treatment and my sense of determination to push through the treatment has increased exponentially. When I was first diagnosed, the risk of the melanoma spreading to the sentinel node was 15% but I was in the unlucky 15% group. Now I feel like I switched to the other side of that coin.
January 23, 2019 at 10:15 am #22947
Oh, this is such good news Beth. And timely as I was just thinking about you yesterday. So happy you will be able to start systemic treatment shortly. This is just the example of the type of stuff we keep pushing for. Without access to systemic treatment for stage III patients, we would be left with just the surgery and hope. Advancements are happening in treatment. Also glad you didn’t have to go through the full dissection and potentially face lymphedema issues. you are indeed falling on the right side of the coin now. Hope you can celebrate this good news. Fear not about the treatment either – we have many on-line that are going through it or have been through it – most have very few issues or side effects, so I will cross my fingers for you! Our monthly support group also has patients in it on Nivo, so feel free to drop in and chat if you are up to it. I hope you will continue to share your progress. Thanks for sharing and we all share your relief!
Annette – MNC
January 30, 2019 at 11:36 am #23105bethharteParticipant
I did go through the PLND and another LND in the groin. I wanted to be aggressive. I already deal and have controlled lymphedema from my first surgery in 2010. I have learned how to control to the point of minimal and short flare ups. Most flare ups only happen when I get a nasty virus like flu or a Norovirus but through graduated compression with wrapping, easily available compression active wear and undergarments, and exercise, they are mild and short lived. Most only last a few days. Due to both surgeries I have some lymphedema now but through the above methods and elevation I have managed to move most of if through my system and out. In truth, I have found, through personal experience, layered compression, exercise and manual lymph drainage massage to be more effective than the standard compression garments because I can adjust compression as needed. I know the garments available for upper body are not extensive as lower body but there are some on the market. A few sports companies make compression tops. These are great alternatives and for the places they don’t work they help keep tensor wrapping in place.
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