Post-chemotherapy treatment?

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Hi, I’ve recently just finished chemotherapy after having had a Whipple’s procedure in August last year, and have an appointment with my U.K. oncologist on the 11th May. I had completed 17 of 18 planned infusions of gemcitabine (plus capecitabine for some of those cycles, long since stopped), but was informed yesterday that my blood platelets were too low to proceed with the final drip, which was then cancelled (not postponed). I had a CT scan done on the weekend of the 11th April after collapsing and having been admitted to hospital. My oncologist was later surprised by the timing of that scan, and I strongly suspect that it might be used in lieu of a standard final CT scan following completion of treatment. There was a scare after an earlier CT scan done halfway through my treatment (in January) had suggested that the cancer had spread to my liver, during which time I was led to believe that I only had months left to live, but this was, thankfully, shown to have been a false alarm during a subsequent MRI scan (the most interesting three weeks of my life!). I have not been informed about what happens next, now that the chemo is over. Obviously it involves first recovering from the effects of the chemotherapy, but what then? Could anyone tell me what sort of treatment (if any) I can be anticipating from now on? My specialist nurse appears to have been “reassigned to the wards”, the alternative is on leave, and I have basically been left with a ‘don’t call us, we’ll call you’ situation. Many thanks in advance.

  • Hi Paddy

    I'm pleased that you have recovered well from the Whipple. Treatment can vary from person to person. think you will have regular scans for a while but normally after the chemo has finished there is no other 'treatment' as such. Just keeping an eye on you!

    Squeaky

  • Hi Squeaky, thanks for the response.  Any idea on the likely frequency of those regular scans, and will that frequency likely change as time goes by?  

     

    My single-minded goal over the last few months has been to get through the chemo, I have not thought about anything else.  However, now that I’m at the end of that (I have yet to recover my strength, though) other priorities are emerging, such as the need to see loved ones who I may not ever see again, and who have suffered immensely during this (particularly my septuagenarian mother, based in another country in another hemisphere).  I was alone this side throughout the chemotherapy (I live alone), regular WhatsApp calls from these people really helped keep me going when I felt like giving up. 

     

    I cannot make plans if I don’t know how regularly I will be advised to get scans / see oncologists etc. on this end; I’m just trying to more-or-less get an idea of what my plans are likely to have to be, so that I can tell my mom when (if?) she is likely to be able to see me again, and also for how long (e.g. if there are scans every 3 months then I obviously will not be able to stay with her for three months – although I can do with someone else preparing my food for me for a change, I can tell you).

     

    Perhaps I should mention Type 1/2 pancreatic cancer with 5 out of the 18 lymph nodes resected during the Whipple’s procedure being cancerous, obviously more than just a bit of a concern.  Also I must stress again that my sources of information here appear to have completely dried up due to an already understaffed NHS (no fault of their own) desperately trying to cover for staff members who are off sick (COVID) and people having to be reassigned for emergency cover.  My clinical nurse specialist has gone off the radar as a result of this, telephone conversations with my oncologist are short and he clearly has other patients who he needs to see, when I take out a list of questions that I have prepared beforehand he gets visibly edgy trying to rush me along, and I only hear from him infrequently (although regularly) anyway.

  • Hi Paddy

    Covid has really thrown everything into disarray hasn't it? I think that different methods are used at different centres but my understanding after a Whipple is that once the surgeon 'signs you off'' the main person to be in contact with is the oncologist. 

    You mention that you have an appointment with the oncologist on 11 May and I think that they will tell you then how often a scan will be done.

    Some years ago a very interesting paper was written about how people feel at the end of cancer treatment. I have had cancer (not pancreatic) and had surgery (x2) and then radiotherapy. At the end of this I felt a bit 'left alone' and the paper confirmed that this is often the case. You may be feeling like that too.

    I hope all continues to go well for you.

    Squeaky