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So anxious over imminent scans and immunotherapy failure !!

Forums Cutaneous Melanoma Community So anxious over imminent scans and immunotherapy failure !!

  • Post
    anxietyalldaylong
    Participant
      Hello everyone !

      I was diagnosed with nodular melanoma last year on my chest, which went to stage IV 3 months ago. Mets in skin, lungs and bones. I started keytruda and I am now on the 5th cycle, ready to get my next scans next week.

      I have been asymptomatic when it comes to the disease, but had mild skin rash and severe oral mucositis which started two weeks ago and were attributed to the immunothearpy. I have been on steroids for a week now.

      I am very scared that the keytruda didn’t work and multiple mets will show up on the scan and this is for two reasons:

      1. One of my subcutaneous mets was growing and bothered me after starting the immunotherapy and had it surgically removed after 6 weeks on keytruda. The biospy didn’t show any necrosis or signs of regression (ie scarring) but showed infiltrating lymphocytes in the margins of the lesion. Shouldn’t it have started working at the 6th week mark already ?

      2. I haven’t had any severe adverse events until now (I have read the severe side effects correlate with success of treatment).

      Is there hope if one fails after keytruda ? I don’t think I will be able to go through the scans, I keep imagining the doctors telling me I am full of mets and that’s it. I am too young to just die and I am full of stress. Any help will be appreciated ! Thank you in advance, and I wish everybody health.

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    • Replies
        Edwin
        Participant
          I received Keytruda immunotherapy from November 2015 to February 2016. In that February walking became very painful. A March PET scan showed melanoma in several of my bones. I was switched from Keytruda to ipi/nivo immunotherapy followed by nivo alone. My bone cancer disappeared.

          So, another treatment can sometimes work, if Keytruda immunotherapy fails.

          You can and should go through with the scans. A PET scan in painless. Your oncologist needs the information from your scans.

          Bubbles
          Participant
            As Edwin says – get your scans!!! IF!!!!!!!!!!!!!! And that’s a big if – you have progressed you have other treatment options! Just adding ipi or switching to ipi/nivo may be a relatively easy and sensible next step if needed. Lymphocytes infiltrating your tumor is GOOD!!! Lot’s of tumors swell early in immunotherapy treatment as they are infiltrated by attacking cells prior to regression. In immunotherapy for melanoma – Melanoma Big Dogs emphasize – “Be patient with the patient.” Hard to face, but response to immunotherapy takes a minute.

            As to your side effects – it is not true that you must have severe side effects to have a response to immunotherapy. Lots of people have little to no side effects and respond really well. On the other hand, if you’d like to look at the data and side effects there is this: Icky skin stuff = good? In relation to immunotherapy response for melanoma??

            And when you recognize the GI tract as a long tube with various bubbles and lumps that starts at the mouth and ends – well you know…. You have in fact experienced a colitis like response. Given that, there is this: This stuff is still weird – Side effects to immunotherapy – Part 11! Heart problems, diabetes, arthritis – Oh MY!!! BUT!!! Colitis may be associated with a favorable response!!!!

            Sorry about the mucositis by the way. Not many of us deal with that, but I did and it was pretty miserable! So, hang in there. Get your scans. You can’t fix what you don’t know you are dealing with. Melanoma ain’t for sissies. But, you’ve got this! I wish you my best. Celeste

            anxietyalldaylong
            Participant
              Thank you so much both of you for your kind help ! I feel a little better reading these sources. I hope everything will go well for everyone and this year will be better !
              Grace
              Participant
                I have had relatively mild side effects from my immunotherapy treatments (4 doses Ipi/Nivo and now on the maintenance dose of Nivo), but I am responding really well! My main side effects are itchy skin, hair loss and oral mucositis, but not severe enough to need steroids. I also had a lot of anxiety about whether I would respond, so I understand what you are going through. After my first 2 doses of Ipi/Nivo I had significant disease progression (ie. no response) and went on targeted therapy to lessen my disease burden. I was so anxious about restarting Ipi/Nivo for fear that I would not respond, but my scans 8 weeks after restarting Ipi/Nivo were extremely encouraging, larger tumors were much smaller and smaller mets were no longer detectable!
                Chris R
                Participant
                  I just finished 3 of 4 Ipi/Nivo treatments and had to stop due to colitis. I go in for my first post treatment scan on June 17. I am tempering my anxiety by considering the three possible outcomes: 1.) Scan shows regression, which would be great, 2.) Scan shows no change, no change is good. 3.) Scan shows growth, or other hot spots, okay, less than ideal, BUT… according to my oncologist, the treatment can inflame some spots to make them appear bigger initially an thus make other spots show up. It can take up to 6 months to know for sure if the treatment has failed. As such, I would view the third result as inconclusive for this scan. Will I be disappointed? Naturally, but as others have said, we need to be patient.

                  Lets face it, there are some things that are just flat out of our control, and I am a bit of a control freak. I have come to accept that.

                  I had a pretty rough two weeks with side effects that kicked my butt. (I know others have had worse) My goal from here on out is to make today better than yesterday.

                  I am reading a book that is basically a journal with daily thoughts. Today’s topic was courage. It had a couple quotes:

                  “It’s never too late to become the person you might have been” – George Elliot
                  “Courage is not the absence of fear, but rather the judgement that something is more important than fear”- Meg Cabot

                  I hope that you can move forward toward your scan with optimism and hope. There are options after immunotherapy. Keep the strength!

                  Chris R
                  Participant
                    I go in tomorrow for my first post Ipi-Nivo PET scan. My first Ipi-Nivo treatment was April 20th. I remain optimistic but understand, particularly for the first scan, that it may not show ideal results. A bad scan 2 months into treatment does not mean failure.
                    Chris R
                    Participant
                      I got GREAT news. 2 of 3 nodules no longer visible and the largest (9+mm) has, as the report says, “significantly” shrunk to 6mm. That works out to 75%-/- reduction in volume! Hopefully the regression continues. Well worth the 10 days of side effects and now taking a thyroid pill. Ipi/Nivo has worked!

                      I hope anxiotyalldaylong’s scan goes as well!

                        ed williams
                        Participant
                          Good job Ipi+nivo!!! Hope things keep getting smaller!!! Best Wishes!!!Ed
                          ed williams
                          Participant
                            I should add that I was responding in previous post to Chris and the good Ipi+nivo results.
                          anxietyalldaylong
                          Participant
                            Hello everyone !

                            I am very happy to hear that many of you had good results !!!

                            I am sorry to not post since January. My CT came back with multiple ground glass nodules, increase in size of two of my lung nodules, had in the meantime even more subcutaneous nodules and a triple sized increase of my bone met. My onc decided to continue with keytruda until my next scan which was a PET-CT. After 3 more months I got my scan two weeks ago. My bone mets have disappeared, almost all my lung nodules disappeared and all my subcu mets disappeared except two which have become very small.

                            The only thing that made me anxious is the fact that one of the lung nodules that had increased in size in the CT has remained the same in size, and also now has very faint FDG uptake, which it didn’t have on the very first PET I had before starting keytruda. My onc believes that since all the other areas are showing improvement, it could probably be faint residual uptake due to the immunotherapy and subsequent inflammation that took place. Has anyone had any idea if faint uptake on a lung nodule is bad ? Shouldn’t it have a higher SUVmax ?

                            Nevertheless I feel very happy now !!! Thank you for all your support ! I have had a very depressing 3 month period !

                              ed williams
                              Participant
                                Hi Anxietyalldaylong, you might want to try and actually use a real name on the forum. I wrote a post yesterday to you, since when I tried to reply yesterday, it said this post was reported to admin??? Well it seems to be working now, my idea was to post your actual report and let some other read and help (maybe) to give you their experience in reading medical lingo!!!
                              anxietyalldaylong
                              Participant
                                Hello dear Ed ! Thank you so much for making this great effort to reply to my post ! Thank you so so much, this means a lot to me !!!

                                This is the report of my scan:

                                Physiological supra- and infra-tentorial glucose utilisation. Mastoid cells and paranasal sinuses free. Cervical lymph nodes without enlargement or metabolic pathologies.

                                Mixed response of the pulmonary nodules with some of them increased in size and resenting faint FDG-uptake, (e.g. of the RtUL T LtLL Se1451/Im145,169 to Se16/Im52,142; from Se16/Im54,149 on previous exam), partial response of others (e.g. from Se16/Im47 to Se16/Im46) and complete remission of others. Absence of pleural or pericardiac effusion. Normal appearance of the mediastinal and axillar lymph nodes.

                                Physiological and homogeneous hepatic metabolism. Normal metabolic status of the rest parenchymatous abdominal organs. Infradiaphragmatic lymph nodes of normal size without FDG-uptake.

                                Complete response of the lesion of the 10th left rib.
                                Complete remission of the FDG-uptake of the skull.

                                No suspicious cutaneous/subcutaneous FDG-uptake. Metabolic normalisation/remission of the back and posterior pelvic subcutaneous infiltrates.

                                Thank you again for all your help !

                                ed williams
                                Participant
                                  That’s a great report, I like the word faint, would have been nice to be a little more precise by giving an SUV value if any or say nothing. I have found over the years that some of the folks that write these reports are more detailed than others and some flat out make careless mistakes. I would want my oncologist to take a look and confirm what the heck they meant by faint, put a number on it or don’t write it down. I learned long ago not to get excited by reports until I go over them with my oncologist, once they read the wrong guys scans and had me with liver mets growth compared to previous size, only problem is I had never had liver mets and it turns out they read the wrong person’s scans. Good luck with things!!! Ed
                                  anxietyalldaylong
                                  Participant
                                    It’s amazing how many mistakes can happen without the patient being informed !

                                    Regarding the report, my onc believes that the reason for not writing a specific suv is beacause the value seems to be the same with the overall FDG-avidity of the lungs, so he is not sure whether this avidity is specific to the nodules. He says the avidity is not shaped as the nodules either. I am sorry if I can’t explain this correctly though.

                                      ed williams
                                      Participant
                                        As long as you are getting your explanation from your oncologist, I thought you had not spoken to the medical team yet. Medical speak is different for each specialist in each specialty of the body from my experience, I guess that is why it takes so long to become a specialist of one region of the body or the use of technology like radiation oncology or radiation neuro surgeons etc. I remember a few years back when I had been using what is called the 3T MRI machine at the Ottawa hospital for my follow up for 3 brain tumors, around the year two point of having SRS treatments, the MRI department booked me into the older less powerful MRI machine at the hospital and the specialist who read the report saw something in the region of one of my 3 tumors. Well, this can make life more exciting until my specialist radiation oncologist said not to worry!!! His comments were something like ” we will go back to 3T machine in two months just to be sure instead of waiting for normal 3 months period.” The specialist felt is was nothing, which turned out to be accurate but it still makes things sporty when some expert in a small room somewhere reading a report, they see something but they don’t take into account all the information properly but still writes a report that can throw a cancer patient’s life into a tail spin. Hope the scans keep coming back as positive as this one!!!Ed
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