Anxiety waiting for immunotherapy response

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I’m feeling anxious tonight after seeing my oncologist today. I’m due my 5th IV infusion of Pembro tomorrow which is going ahead. However my scan results show there looks to have been some progression. She thinks it’s complicated and is still possibly indicating pseudo progressio. I’m not I’ll - in fact feeling a little better than when treatment began. Certainly not in great pain- just occasional abdominal discomfort usually related to after food or when constipated. (My cancer is around peritoneal lining; spread from womb originally and is Serous type)

I just don’t know what to think. Her advice is to keep going and scan again in 6 weeks. If by then there is further progression, we’ll review and possibly start Chemo (which was quickly effective last time, but recurred after 5 months)

You might ask why I’m worried then. I’m sitting here thinking - is it worth it? Is it really going to make a difference? I’m just so mixed up about it all.

anyone else experiencing this anxious confusion?

plus we had hoped to fly off to Tenerife for some sunshine. My oncologist says “I’m not overly enthusiastic about you going” but won’t say don’t go. Now I’m thinking - will I ever go abroad again? I don’t want to be fearful. I want to enjoy the little time I have. But these things are clouding my life right now. 

On a positive note - I start my counselling tomorrow! After a 5-month wait. Turns out the nurses hadn’t done the referral correctly. Psychology had never received it! How can that happen? Anyway, the psychology team were stats when they I complained and within a day they offered me an appointment within the week. Something good is finally happening:)).

  • Hi Bev, i understand your feelings toward treatments that may or may not work, especially when your feeling ok and worry how they might impact how you are feeling. I am glad you feel well ,and as your oncologist didn't say no, wondering why your not going to Tenerife, as you say will you get the chance again, I'm sure some warm sunshine and relaxing would be good for you. Good you are to see a counsellor, as someone who has been seeing one for 6 months I would recommend them to everyone, take care.

    Eddie

  • Hi Bev, I'm so pleased you have finally got an appointment for a counsellor. Regarding your holiday, when diagnosed my oncologist advised me not to fly. She didn't say don't go on holiday. So we took the train from Glasgow to Newcastle, stayed the night and the following day took the ferry to Amsterdam! Where there's a will, there's a way. Several months later I asked about going to Spain, as we had been going during the winter months for years. Her answer that time was, if I felt well enough for the trip then it was up to me! This year again we have just come back from Spain, the only difference now is we go in Feb/Mar instead of Jan/Feb when the weather is much better. We have been back just over a week and yesterday we booked two weeks in Majorca for Sep/Oct. We love our holidays, even a weekend break in Scotland, it doesn't matter but the boost it gives you lasts for ages. I would say, like Eddie, she didn't say NO, so it,is up to you. Honestly I think it would do more GOOD than HARM as long as it is what you want. Even if you don't go this time, yes you will go abroad again once your treatment works!!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Bev, i had pseudo.progression from immuno therapy also...it's common. So try to think positive.

    And for your holidays...just go, cuz if you feel better it helps to. My thinking. 

  • Thank you. It helps to hear that you went through it. I don’t feel marvellous but I don’t feel any worse and although I have discomfort in my abdomen it’s not the original pain I had. So I still have hope.

    How long was it before you saw any regression of your tumours? Or decrease in numbers? 

  • I get you over the holidays. I’m worried about flying- and the risk of strokes. But we have other holidays in UK planned and if the treatment starts working we plan a rail trip to Italy in September. I’ll get to see sunshine somehow.

    I suppose the awful wet weather we’ve been having isn’t helping at all and makes me so miserable. I was craving sun and warmth. If there had been some positive change, I would feel much more confident. My husband isn’t helping much at the moment. He’s either saying things like “you could be around for years yet” or “it looks like it isn’t working.” It’s driving me mad. 

  • Hiya,  I have stage 4 breast cancer that's moved to my hip and head.

    I am quite stable at the moment, I would just like to re-assure you over holidays.  Like you were lovely to travel, on diagnosis I had 4 booked that I had to cancel, thankfully we got most of it back through insurance.  After Chemo I asked if I could go on holiday, he said if I felt well enough I could go.

    I don't know how long I have left, none of us do. But my opinion is if you feel well enough go for it. I find the biggest problem is insurance, the company I am with, will insure everything except the cancer.  

    Quality of life is important, also a holiday will give you something to look forward to.  Don't forget holidays in Europe are covered by the European medical card.

    Cindy xxx

  • I had pseudo progression on Pembrolizumab before I had reduction, it’s very common. It was a scan almost 5 months after the start of treatment that showed the very material reduction. Unfortunately I had had to stop treatment by then because of a serious adverse event. Which brings me to going abroad - my serious event started the day after I got home from holiday (in France). I don’t know what would have happened if it had started up whilst I was still in France but I suspect I wouldn’t be here to tell the tale had I delayed getting treatment. 

  • Hi Bev I have heared of the pseudo progression when first starting immunotherapy,  I didn't  have that but some do. I think at some point we all get anxious about weather it's worth carrying on, talk this through at your councilling session.  My oncologist always say at the end of our chats  " I'm happy for you to  go on holiday " I think it's up to you and how you feel. My problem is Insurance  since also diagnosed with diabetes, cancer and angina, most won't touch me. I hope your treatment  goes well tomorrow.  Take care XX

    Moi

  • Hi Cindy, I'm sure you will find the European Medical Card if you have one, once it expires they don't renew it because we are no longer in Europe. You can send away for a different one UKGHIC (UK Global Health Insurance Card). If you have an EHC you can use it until it runs out, once it runs out you cannot renew it

    I wouldn't go abroad if I wasn't covered for everything. I also have OA, cirrhosis of the Liver, Lymphodema, Diverticulitis & High Blood Pressure! The companies I have got Travel Insurance with, are MIA, insurewith, and atm Staysure! There is a dedicated Holiday Insurance chat on this site. Put Travel Insurance or Holiday Insurance into the Search here! 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Bev (GCL) If my husband made comments like that, I'm afraid I would have to have a chat with him. He can't have it both ways and he is meant to be supporting you. Please tell him how you feel, he probably doesn't even realise he is driving you mad!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!