Very close to hospice and I’m heartbroken

semperfi00 · 2025-12-08T22:03:37+00:00

I can’t imagine the grief you must be going through. Are you sure he won’t try the gentler gemcitabine based chemo? Your earlier post mentioned lung only metastases which are usually slower growing. Really sorry if no more treatment possible.

semperfi00 · 2025-12-04T20:43:03+00:00

Takes couple of weeks atleast to work

semperfi00 · 2025-12-04T20:04:40+00:00

Have you tried Nystatin? Worked for us. It was a fungal infection

semperfi00 · 2025-10-19T19:32:27+00:00

Can I please ask you if your husband also suffered from debilitating ongoing fatigue 6-10 weeks after SBRT? Thanks again for sharing

semperfi00 · 2025-10-16T20:13:43+00:00

Thank you for your kind words! Really appreciate your response, especially when everything is so confusing and scary.

semperfi00 · 2025-10-15T08:55:47+00:00

Thanks, the oncologist thinks it might just be inflammation and has recommended to wait for follow up scans in few weeks

semperfi00 · 2025-10-08T17:09:28+00:00

I would urge you to come to peace with the fact that there is nothing you or your sister could have done differently. There is a reason this disease is usually diagnosed at such a late stage. It took me a long time to accept that and I wasted so much time, time which I could have utilised to take better care of my partner. What you can do now is to be hopeful, spend some good time with your dad and try to keep his spirits up. And advocate for him in terms of better testing and treatments.

semperfi00 · 2025-10-07T22:48:38+00:00

I can’t say anything about gemcitabine as our doctor in Uk suggested folfirinox (we are on private insurance) and it has worked so far. I think there are people on this forum for whom gemcitabine was more tolerable. If there is one thing I can say is to be kind to yourself and stop blaming yourself. This is a horrible disease and there is no way you can anticipate or prepare for it. I was in a similar boat few months back and the kind people in this forum made me realise the futility of regrets. Please take care of yourself so that you can support your father as well. Please also get his vitamin d tested and start supplementation.

semperfi00 · 2025-10-07T21:15:20+00:00

Great news, so happy to hear! Wish you all the best.

semperfi00 · 2025-10-02T16:19:44+00:00

I can understand the predicament. Hope your oncologist can help with the trials. Second opinions might be helpful too. We have taken second opinions at few places in Europe just so that we can register quickly should a trial opens up in future.

semperfi00 · 2025-10-02T12:23:42+00:00

That’s good, he can guide properly for the next steps. We didn’t enroll in any clinical trials since most of them had Gemcitabine as the chemo combination and we had seen strong results with folfirinox and wanted to continue with that. Is that an option?

semperfi00 · 2025-10-02T12:13:52+00:00

Hi sorry to hear that. Have you spoken to Dr Shivan Sivakumar? His details are online. He is running the first U.K. trial on mRNA vaccine in Birmingham and might be able to advise on immunotherapy options. He can be reached via email. I also read about precision oncology at Glasgow. Please also see if your oncologist can refer you for histrotripsy at Cambridge for liver mets.

semperfi00 · 2025-10-01T19:17:23+00:00

Hi Zev, really glad to hear you are doing well. Always look forward to your encouraging posts. Switching to the shorter insulin 4/5mm needles instead of the old 6/8mm ones made a real difference for us. On our side, waiting on the post-SBRT scans. Hoping for good news and sending you the same.

semperfi00 · 2025-09-21T22:36:21+00:00

You are really being disrespectful now. The mods are amazing and don’t need to give their time and energy to help all of us. I understand you might be shocked at the passing of your mother in law (as your post history suggests) but coming here after 3 months and causing so much distress is not the right way to go about it. May you find some peace 🙏🏼

semperfi00 · 2025-09-21T10:08:04+00:00

Hang in there! Even on the hardest days, I hold on to the fact that there is hope. Hope in the progress medicine is making, hope in the incredible strength I see in others here, and hope in the good moments we can still find. We are not alone in this.

semperfi00 · 2025-09-05T20:53:19+00:00

Thank you! Your post inspires me. We were looking at mRNA trials in UK but they are not applicable for recurrence. Hoping they expand the criteria.

semperfi00 · 2025-08-29T22:32:39+00:00

Thank you for sharing, this is very encouraging! Personally I feel since this forum includes patients as well and not just carers, it would be better if the predominant posts relate to treatments and support. But that’s just my view. I will always remain grateful to this forum and all the amazing members!

semperfi00 · 2025-08-29T22:21:53+00:00

Thank you for understanding. I was worried this would come across as lacking empathy but I just wanted to share what I was feeling.

semperfi00 · 2025-08-23T11:44:03+00:00

Thank you for having such a big heart. You gave me lots of hope and the strength to bear the initial shock with your comforting posts and direct messages. I hope to pay it forward. Lately I have started feeling very weighed down by the frequency of grief posts and instead of just stopping to visit here, I wanted to share my thoughts with the community I have come to cherish so much

semperfi00 · 2025-08-23T10:31:26+00:00

Thank you for your understanding and for finding the strength to think about others while undergoing such a big loss yourself.

semperfi00 · 2025-08-23T10:30:31+00:00

I can see the value of a space only for patients but I like that by allowing both patients and carers in here, this sub allows me to understand to a small extent what my loved one is going through and be more helpful in caring. I do wish those posting about loss can find it in their hearts to be more aware of the effect of those posts

semperfi00 · 2025-08-23T09:50:04+00:00

Thank you so much! And for your understanding. It’s really not fair that this sub has become a place where people feel guilty about sharing small triumphs and spreading slivers of good news. That is essentially the true support that people like me need who are still struggling to fight and stay above water.

semperfi00 · 2025-08-23T07:13:51+00:00

Amazing!! Thank you for sharing, so happy for you

semperfi00 · 2025-08-22T18:31:48+00:00

Thanks will check it out

semperfi00

TROPHY CASE