Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Mixed response

Roobarb
Posted by

hi all, I got my scan results today (this is after 2 doses of Pembrolizumab, I’m on a clinical trial for my ovarian cancer).  It says I have a mixed response......before the trial started I had scattered lesions through my abdomen with a nice big patch on the surface of my liver, I have no other treatment options other than chemo which they do no expect to work.  My cancer is aggressive so I have a short expiry date.

anyway my scan results show a mixed response, some spots have shrunk, some stayed the same, some larger but worrying, new spots too......and some of them are measurable, so it does not feel good.  Added to this I have lots of new pains from when I started at the beginning of September.  My consultant says they are not too worried, they would never normally scan this early except for it being a trial and want to keep going for a bit, but I was a bit upset.  I knew the trial was a bit of a long shot but I wonder if it am silly to feel like I am running out of road fast.......

i don’t really know what I want folk to say, I just felt like of all things this uncertainty is horrible....but then maybe I should focus of the positive that some things shrank being a good thing? And it is a better treatment than chemo although my thyroid is goosed.

*sigh* I don’t know what I am saying so I will stop now......hope all are well, I know there’s worse than me out there, so I apologise for being maudlin. Love heather. Xx

Gobaith
Posted by

Hi

I'd say some shrinkage is great - 2 treatments is really early but shows it's working so no reason to suggest that can't continue. I'm on pembro too - had number 17 last week (every 3 weeks). I was told that initially with pembro there are some areas that look like growth but aren't and they settle down - can't remember what they called that. I started in October last year and had my first scan in Jan - there was reduction and I was really pleased but I also had a new brain met show up that baffled everyone as the others had all vanished. That one is still there although shrinking. Scans in May showed further shrinkage but not as dramatic as before and no new growth and I have more scans next week to see where we are.  

My thyroid is destroyed too and I also have a lot more aches and pains that before but they are manageable with exercise and when I must, painkillers. 

Chemo wouldn't work for me either so sounds like we're in a similar boat (I'm womb cancer) so please don't let this get you down - hold on... might yet be amazing. If not, deep breath when the time comes, but that doesn't sound like that's just yet. 

Glad there's evidence it's working. I understand the uncertainty though - I've been fine for a while and yet scanxiety for next week is starting to kick in. Hoping you can focus on the shrinkage!

x

Clare
shortfriend
Posted by

Dear Heather, please don't apologise for being maudlin, I am guilty of this my self tonight, Shrinkage is good and the consultant is not too worried, if there was no hope surely they would just stop the trial and not keep it going. The uncertainty and waiting often scares me and I have resorted to prescribed medication for this which. helps. I also see only positive friends and try to be positive when I am not worrying! I strongly believe that cures even miracles can happen and remain positive by thinking this so please don't worry about something we can't influence (easier said than done I know) and focus on doing things and seeing people that you like, this forum is a great support and people are living much longer than they were told they would be, I plan to do the same.

Have a peaceful night and plan something nice. I am sending you positive vibes and will be thinking of you.

Love

Pat xx

daloni
Posted by

Hi

Oh I feel for you. I’ve been there and done that with a “mixed results” scan. It’s a lot to take in. I know I’ve said it before but it always feels to me like I’m a snow globe that’s been given a good shake. The snowflakes take a while to settle and then a new tableau emerges. Somehow I manage to find a positive way of looking at it because frankly the alternative is not a place I wish to rest my head.

I hope you’ll find the same. As rightly says, it could go either way and you might well find things turn the corner and start to improve. But in the meantime, be gentle with yourself and take it one day at a time. 

Lots of love and gentle hugs sweetheart

xxx

Roobarb
Posted by

Ladies, thank you so much or your responses, I can’t tell you how they helped and were lovely to wake up to.

my snow globe has settled somewhat this morning, as I realised my alternative path (chemo) would have shrunk nothing and made me proper poorly.....so this was still the right option to take, even if it is not quite doing what I had hoped so far. I will listen the doc and take a breath and keep going.....and it might get better but equally it might not, but at least some of the wee blighters have shrunk.

thank you all of you for taking the time to write as I know you are all busy and have troubles of your own,

love heather xxx

shortfriend
Posted by

Hello Deloni,

I sent you a reply re what you said to Roobarb last night but it seems to have disappeared into the ether! I love the snow globe description but also wanted to say thank you for all the support you give to forum members no matter what you are going through. I am fairly new to this forum but have noticed your compassion and supportive response to others, I wanted to let you know that some of your responses have lifted me from low moments ,even if I haven't posted at these times I am still reading and very grateful that you are there, it reassures me that there are people such as you who are listening and understanding. Thank you to all the others who do this, I can see why you are community champions, and I love the humour members use despite what they are going through. I am no champion but I certainly feel stronger and more optimistic when you post. Thanks to everyone.

With love and big hugs

Pat xx 

daloni
Posted by

Hi Pat, 

That is so very kind of you to say. Thank you. I am happy to know that reading my posts and those of others here has lifted you at low moments. Sometimes the best and only thing any of us can do is reach out through our own suffering with kindness and compassion to those around us. 

With love - and in the hope of getting to know you better 

xx

Tinalay
Posted by

Morning Roobarb, this has only just shown up so apologies for the late response.

I think you're right, the uncertainty is exhausting, I'm so sorry the scan results weren't what you were hoping for and are difficult to interpret.

I was in hospital in July with pneumonia and pleurisy, and since then my cancer markers have shot up and both the radiographer and Consultant during my admission say the scans show disease progression to my lungs and widespread bone mets in my spine and rib cage. The liver met has grown. My Consultant says the bone mets were there before and changes in my lungs could be consolidation from what he describes as 'raging' pneumonia. Yes one of the mets has grown but the others haven't. I'm  getting the results of the latest scan on fri, we hope to hear that things are stable, steel ourselves for bad news, but never in my wildest dreams did I expect to hear we don't know what this means.

I've been given the benefit of the doubt for the last 3 appointments which was a huge relief initially but like you, this does not feel good and I can't help thinking time is running out.

I've always thought it was better to know exactly what you were dealing with but maybe that's a luxury we don't have at this stage. We just have to dig deep and hope for the best, the benefit of the doubt is better than hearing that the treatment isn't working.

I'm not surprised you were upset. Once the dust settles again no doubt you'll focus on the positives, 'not too worried' takes on a whole different meaning for us!

I hope the scan just shows that it's early days, the treatment has caused some tumour flare but there are signs of some positive response too. Sending love and positive vibes your way xx

Tinalay 
Roobarb
Posted by

Thanks for your lovely reply, it has really helped.  I so hope your scan shows stable results on Friday and you can catch your breath and go back to feeling relief.  I guess ct scans by their very nature are a blunt tool, they can show patches are there but can’t tell you what the patches are.  As we have cancers, cancer is always the most likely suspect in the room.  If it helps I had a patch show up on my lung, that they thought was a met from my ovarian, it shrank halfway through chemo which made them even more suspicious, and showed up as “hot” on a PET scan too....even more suspicious! They removed part of my lung as a precaution, and it turned out to be an abscess caused by an old infection, no cancer to be seen, so I hope yours may be something similar and your consultant is correct.

ive settled slightly since I got my results.  I suspect it is disease progression, rather than the pseudo-progression they sometimes see early in immunotherapy if only because I have so much more pain than before.  But I also am pleased some things are smaller.  I think the drug is doing something but just can’t do it quickly enough to combat my extremely aggressive cancer.  I’m still glad I am on the trial and they will get interesting information from my response, and that feels important.

anyway, it’s a glorious day here in East Lothian and the dogs are keen to get out, so the outdoors beckons. that helps too I find!

have a wonderful Sunday xxxx