The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

caman

Forum Replies Created

Viewing 7 reply threads
  • Replies
      caman
      Participant
        Hi,  did you get your covid shot recently?  I’m asking because I got ALL of my side effects from immunotherapy starting with my first shot of the vaccine and the side effects escalated with my second shot,  including Rash.  Not saying we should not get the vaccine,  but it is troubling.
        caman
        Participant
          Rhonda, did your husband get a Covid shot?  I’m asking because I was on immunotherapy as well and 10 days after being vaccinated,  this is what occurred

          Aortic dissection,  Hypothyroidism,  Pancreatitis (likely due to clot),  Colitis,  Vitiligo,  Rashes, Allergies.   This is after being side effect free for 10 months while on immunotherapy, aside being tired.  My body reacted big time, scan indicated new inflammations, including prostrate,  that were never there before.  I’m just beginning to recover to my old self.   Coincidence?

          But I’m NED,  so I’m grateful

           

           

          caman
          Participant
            Two weeks after second covid shot

            Mesenteric Dissection,  Pancreatitis,  Colitis,  Vitiligo,  Hypothyroidism,  skin eruptions.

            Coincidence?

             

             

            caman
            Participant
              Hi, well feel blessed you took care of it right away. I was stage 2 not knowing I was actually stage 3 until two years later, and I’m lucky it still hasn’t spread. I’ve been very fortunate so far. Just regional, not distant. Immunotherapy is probably in the top 3 medicinal breakthroughs in the past 3 decades, if not number one. In your case I would recommend getting a Tempus Study done on the cancer. Gives you a wealth of information you and your doctor need to know. Expect him to be extra tired while on the Medication. I wish him well.
              caman
              Participant
                I was stage 2 for 2 years till stage 3 came along in March of 2020. Felt a small lump on my neck. Needle biopsy determined in was melanoma. I chose neoadjuvant therapy and started on keytruda right away. Within 2 weeks the lump on my neck felt a lot softer. In about 6 weeks it was about 90 percent gone. Before my 3rd infusion it was completely gone. My surgery to remove that nobe and the other nobes around it is set for July 31. Not sure what the pathology will show after the surgery. I’m hoping for the best, dead cancer cells. That would be the best case scenario. We shall see. Wishing you the best!.
                caman
                Participant
                  Are you still stage 2 ? If so, I believe there is a trial for high risk stage 2 folks and immunotherapy. These drugs have done wonders those that have progressed to stage 3 and 4 .
                  caman
                  Participant
                    Epic!!. when we need and find the most strength is when we find you in good health and spirit.
                    caman
                    Participant
                      Hi Thmoore, found out I was stage 3 late March. Melanoma showed up on my lymph node on my neck I chose to take Keytruda then remove the node after 3 infusions. I think Neoadjuvant Therapy will the standard of care in the near future. The medication worked right away on me. Just had my 3rd infusion 3 days ago. My node feels completely normal. The doctors are now thinking I should take a 4th infusion before operating. Still thinking about that one. I this point I really dont feel there is super rush to remove whatever is left of it. Hope it works out for you. The people that developed this drug should get the NOBLE PEACE Prize. I think you are doing the right thing.
                      caman
                      Participant
                        Thank you Celeste for posting that. Looks like your Absolute Eosinophils max out to .6 k/UL. Mines presently at .9 k/UL. I think this more then just a bone to bite into
                        caman
                        Participant
                          Tkoss, yeah i did the reverse. But it wasn’t considered the SNLB which I attempted to do unsuccessfully 2 years ago. I became stage 3 two years later after my primary was removed. Considered a regional metastasis and likely my sentinel nobe. In any case, I chose to take the drug first before removing because I feel this will be the new standard of care in the near future. It was regional, small and figured i could use it as a guinea pig to see if immunotherapy would be effective on me plus some feel you can sensitize the your T cells which then can attack any future lingering cancer cells. If I took out the nodes first then the drug I would never know if the drug is working or not plus i didnt sensitize my T cells. After taking the Keytruda for 5 months they removed the nodes and biospy result was PCR ..PATHOLOGICAL COMPLETE RESPONSE..meaning zero sign of cancer with zero residual cancer cells in those lymp nodes removed. That’s something you can’t perform with a Pet or CT scan. So my question still remains, how much longer should I stay on Keytruda knowing my next infusion can give me a non reversible side effect, not mentioning killing my present stamina and quality of life. Who knows? the doctors are spilt with this, right now Im too chicken to stop and I’m listening to the doctor that knows the most who saids to stay on it, but no one knows for sure
                          caman
                          Participant
                            Thanx, I’m assuming you removed your cancerous lymph node before starting on the immunotherapy? I took the neoadjuvant therapy route by taking the immunotherapy first for about 5 months then I followed that with the removal of the lymph nodes. The biopsy of the lymph node indicated a Complete Response. I was very fortunate. The verdict is still out on how long to continue the Immunotherapy for those that get a Complete Response. No one really knows, this therapy is very new. That’s why I was asking.. Obviously if i got a partial or no response they would of likely added a second drug to it.
                            caman
                            Participant
                              Real good stuff. I’ve come to the conclusion after watching the videos you provided and reading Celeste info that pdL1 count can’t be done with a fine Needle biopsy. My doctor was real happy with the speed keytruda destroyed the melanoma and to him that’s more indicative than anything else. I should be content and stop googling…thanx man, appreciate all your help
                              caman
                              Participant
                                Thanx Ed. Hope your well man… If I understood her correctly the best way to test for melanoma PDL1 is after the immunotherapy not before and not from a fine needle biopsy. I was tested before Keytruda and tested with fine needle biospy. I guess my PDL1 numbers are probably not too indicative. Am I correct with that assumption?

                                caman
                                Participant
                                  I can’t thank you enough with the hope you have given me.
                                  caman
                                  Participant
                                    Can’t thank you enough, very informative. Encouraging too, mine was less than 1cm.
                                Viewing 7 reply threads