update stage 3c resected

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    • #11817
      Anonymous
      Inactive

      Hi Everyone

      Sorry been pff for bit. Just update i stage 3c primary back of neck size 4.7 mm not ulcerated. Had wle and neck disection found 2.7mm residual and 4 out of 40 nodes cancer but capsale. Tomorrow is 25/25 radiation and will be randomized for clinical trial pembro (keytruda) vs interferon..

      Should be with in a week or so to know which i will get.

      I do know one person is on radiation and just was randomised and is currently on treatment.

      I have asked why i must wait until radiation is finished in order to be randomized but it is what it is.

      Im not sure what i will do if i pull interferon. I may do wait watch and ask for ct scan to check again for ned as currently surgically i am ned…

      Having sode effects from radiation alot of redness on neck some unbalance die to close to ear spasms near blood vessel as i have alot of tissue damage from neck dissection and tired alot and sore throat but maangable. Tomorrow is 25/25 i am so happy to be done with this part.

      Well i just wanted to fill you all in and praying for all of you.

      Lisa

    • #11856
      Annette CyrAnnette Cyr
      Participant

      Hi Lisa,
      You are a real trooper. 25 rounds of radiation on the neck is no picnic and I know a few recent patients who have gone through similar and have had some pretty bad side effects in terms of impacts to their throat and ability to swallow or impact to salivary glands, which is substantial. Also have heard of some with hearing loss or tinnitus as a result of the radiation, so let’s hope that your side effects continue to be tolerable! Good for you to have made it through. You will find that the side effects will stay around for some time as the tissue will need to heal. This is part of the reason that they don’t start you on clinical trial at the same time – body needs time to heal, plus likely the standards of the protocol for the trial dictate this as well. We as patients see trials as treatment, but fundamentally, they are a research tool, so they try to have strict guidelines to ensure they are measuring what they think they are finding.

      We hope you get on the keytruda part of the trial. If not, make sure you ask what are the options. Sending you good vibes and wishing you a strong recovery. Can you let us know how you are doing on the trial and perhaps give some updates? There are so many out there that can benefit from hearing your story – we get many calls from people wondering how they will feel on this trial or others. Hoping you continue to share. Thanks again.

    • #11857
      Anonymous
      Inactive

      Hi i would love to update!! I will do it as often as i can! And thank you takig it one day at a time! I do have a page its not a grouo but others cancer join its about my journey at stage 3c and what happens through it as well articles to educate fanily friends etc.

      Its on fb called

      My journey – fighting advanced melanoma cancer just type in search bar it will have cover page hecan heal cancer

      Please know it is not a group setting it is documenting however u can always share your story or articles.

      Much love to all! Keep strong and postive ..

    • #12233
      Anonymous
      Inactive

      Update

      Got interferon for clinical trial pembro (keytruda) vs interferon. Started Monday jas two rounds second round ended up in hospital bpm 130 and high temp chest pains headache bad and shaking uncontrollably almost blacked out and of course vomiting.

      I am very senstive to drugs and had a feeling i would not beable to tolerate interferon.

      See oncoligist tomorrow thry want to lower the dose however my husband and i are unsure die to the severity of what happen on second dose.

      I jave follow up with surgeron tuesday from neck disection to see how healing is since nov.

      So i may do low dose
      Or i may wait watch and pray new trials come avaialbe or if i move to stage 4 sadly may have better treatment options

      I am extremely stressed out from all of this

      One say at a time.

      Love to ALL

    • #12239
      Annette CyrAnnette Cyr
      Participant

      Hey Lisa,
      So sorry you have reacted so poorly. It is a tough therapy and may not be the one for you. Many have had significant side effects, while others do ok. Hard to predict. We feel compelled to try anything as there are so few options at our stage (3s) and whenever family is involved, we want to step up to the plate and do whatever it takes. But sometimes what is available may not be the best option. Don’t beat yourself up. If your doc suggests this may not be the best path, then listen. There are options if it should return – which I hope and you hope it doesn’t. Doesn’t mean this would make the difference. You have been through a lot. Take a few deep breaths. This isn’t a failure – just a bump in the road. And not necessarily a bad thing. I had to stop it too after two weeks because of the effect on my liver. Not uncommon.

      By the way – we have an incredible patient session on Monday, Feb 13th in downtown T.O. Can’t remember where you said you were living – would be a great time to come out and here about some of the latest information from the Canadian Melanoma Conference held last weekend. There are many new trials in the pipeline and I am very optimistic for the future for treatments. Check out the website and you can register on line. There is also an ability to dial in and watch from anywhere in the country! Hang in there….thanks for the update.

    • #12244
      Anonymous
      Inactive

      Hi thank you for your response!! Yes i have devided to wait watch and head back to sunnybrook and patiently wait for any new trials. Not entirely sure how some work as my surgery was nov 4 and resected and past 98 days hopefully there will be trials coming that will meet my melanoma.

      And you are correct this drug is very harsh on most.

      I am signed up already to go to seminar however not well will do my best to come if not i will be watching by webnair which i registered for too.

      I am very interested to hear what Dr Butler has to say. I am in Oshawa and had surgery at sunnybrook and decided to stay for treatment closer to home. However may move back to sunnybrook in hopes of newer trials come faster to the bigger hospitals in Toronto.

      One day at a time!

    • #12248
      Annette CyrAnnette Cyr
      Participant

      Hang in there Lisa. Normally with trials, there are some restrictions on the length of time since last treatment or surgery, which may be a problem. But also, let’s just hope that they have all the darn stuff and you won’t need anything further. You are right – larger research centres get more trials, but you can also sign up on the Canadian clinical trials site to be notified of ones that are opening. http://www.canadiancancertrials.ca/

      I am glad you are signed up for the session – I know it will be of great value. Also, we are starting a support group in Oshawa next month.These are more of a discussion group for patients to share their story and insights and information that they have with each other. Our feedback from these sessions is that they are very positive and attendees feel greatly reduced stress and a means of connection with others. Let me know if you are interested in attending – we will be posting on our site shortly.

    • #12260
      Anonymous
      Inactive

      Hi, yes i would be interested in the Oshawa discussion! Please keep me posted.

      Meet with oncolgist and wait watch. However he says no scans unless needed show symptoms. Im lost i thought 3 6 and 12 month scans. I am headinf back to sunnybrook for second opinion on scans etc and to see surgeron for follow up. Think i will take my case back to sunmybrook from now on.

      May i ask what treatment u have had. You mentioned your stage 3. How many years are u ned and what surgeries did u have and treatment other than interferon for two weeks. Where was your primary at?

      Thanks for always following up with me im happy i have someone to correspond with through this ordeal.

      As well even thou i had a few treatments before stopping he said i would feel the effects for few weeks i hope it goes away soon.

      Best Regards

      Lisa

    • #15861
      Anonymous
      Inactive

      Hi Lisa,

      I found your post and your case sounds very similar to my own. How are you doing now almost 2 years later? Did you end up on a trial or other meds?

      My journey is just beginning.

      Wishing the best

      Karen

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