Recurrent endometrial cancer to spleen and beyond...

Hey RD & welcome to the club nobody wants to join...

I've now had two bouts of RT, the 1st to my chest was very successful and the second Whole Brain, well we don't know yet - scans in a few weeks and we'll see...

We are actually in the "Golden Age" of cancer treatment so what people like you & I must do, is EVERYTHING we possibly can to perhaps give ourselves a chance of still being around when/if a panacea treatment presents itself!

That 8-15 mths could well be the difference & if RT and other treatments eke that out even further then chances of survival increase exponentially...

I hope you can stay positive, eat well & exercise etc... just give yourself the chance which may or may not come to anything but at the very least you will be able to say you gave it your all.

There is knowledge to be gained here and fun to be had (believe it or not...)

Keep us updated &

Hi Raineday. I think there are people who are here who would have an understanding of what you are going through. I have certainly seen people having the chemo v quality of life discussion. Someone useful will reply I am sure. X

Hi,

I have lung mets and take a targeted drug for my sort of cancer and i seems to have stabilised or slow progression at the moment.

I would research the possible treatments for you 

I was given a 2 year  prognosis 18 months ago.

I feel well and have just gone on a bike ride in the sunshine 

good luck xx

Hi Raineday,

Ive had the same thoughts about whether it's worth having the chemo, I have a rare cancer and my prognosis is 'maybe over a year with good response to treatment' I'm currently on my 5th of 6 cycles of chemotherapy, the side effects haven't been too bad, but emotionally it has been very hard. My consultant did mention a trial last time I spoke to him, but then he remembered that my tumour is duodenal not gastric, so I'm probably not eligible.

At the moment I have a good quality of life, I'm fortunate that my husband is healthy and retired. I want to be able to see my kids and other family and friends face to face at some point which helps to keep me going.

As SIT has said things are changing all the time in cancer therapy, I don't feel it is my duty to keep on going, but whilst I have a decent quality of life and whilst I feel there is something to look forward to I am going to keep on keeping on.

Best wishes with whatever you choose to do. 

Hi Rainieday

I'm so sorry to hear that you have joined our group, it's the group no one wants to join but welcome anyway.

I too have a rare cancer, it's a blood cancer called MDS and I haven't met anyone else with the same cancer. It seems there arr s few rare ones around! 

I was diagnosed in March 2015 and before the following March I was in a wheelchair due to a progressive back problem that I knew nothing about the previous March. I had to leave work and life was tough mentally. 

My haematologist says that different people go down at different rates when I asked for a prognosis. I'm here 6 years later however my bone marrow has taken a downturn lately.

I'm an avid gardener although I am in a lot of pain when I move around, extreme pain that doctors can't get on top of and still leave me compos mentis. I also like to make little wooden items, as well as raised beds that I can work at from a wheelchair. On the site there is a craft thread and also a gardening thread to help with the mind.

I see you have been trying to find a prognosis for your cancer but be aware that most of the information is old and great improvements have been made in treatments for many cancers and there sre trial drugs around that you may get. There are several people on the site who have exceeded what we call their sell by date, so keep being positive and stay with us,

Take care and stay safe Rainieday

Tvman x

Hi Rainieday, Welcome to the Group. In my opinion, only you can make the decision as to whether it is worth having treatment! What you need is to be aware of all the facts but please don't Google it! The trouble with the internet is sometimes it takes ita while to get things updated, especially when you are talking of cancer treatments, the prognosis can sound bad but nothing isset in stone.

I went straight to Stage4 and told I had 5-7 months. My oncologist asked if I was willing to go on a trial drug that could possibly give me a further 6-9 months, if I was lucky! That was in 2013! There are so many new drugs, chemo etc now that were not available even less than a year or so ago. I told my family at the time that if the Trial gave me say 7months, then maybe by that time there would be another Trial then that would give me a bit longer! 

Yes there have been side effects of the treatment and my life has changed, it's been a rollercoaster ride but I am still here and have now seen our 3 grandchildren all start school. We had 1 grandchild when I was diagnosed! I am very lucky to have had the extra years and I still  appreciate every minute of every day!  Good luck with your decision, my attitude was "what have I got to loose!"

Morning Rainieday My breast cancer has spread tomy spine spinal cord, which is a rare complication of metastasis breast cancer. Without treatment my prognosis is 2-6 weeks, with treatment 2-6 months. I’m being offered chemo, due to start on mon with the hope of getting me to the 6 month mark. My first instinct was no more chemo and my OH agreed.

I ‘be had 5 lines of chemo in the 3 years since being diagnosed as incurable but treatable, some hammered me, some were were tolerated  unto they stopped working. I’ve been given a couple of weeks at home with our new normal before I have to decide.

I’ve been on chemo constantly for 2 years apart from a short break because of covid. I feel better than I’ve felt in those 2 years! I’ve got some spark, I’m sleeping & eating well & there’s no rashes, ulcers, hair loss, infection, overwhelming fatigue..I’m so grateful for this time.

I’ve decided to try the chemo. I’d love to stay a bit longer & it’s my best option for that. Apparently it’s usually well tolerated & side effects are dose related so there’s wriggle room. I’ll have an infusion on day 1 & day 8 (which only takes 20 minutes)  day 16 is a day off & that makes one cycle. The common side effects are nausea & tiredness so as long as I can manage that I’m happy to give it a go . The pay off could be huge, there could be a clinical trial within 6 months anndanv is out testament to that.

Good luck with your decision, no one can really know what they’d do unless they’re in this position.

Hello SiT,

Thank you for your kind response and words of encouragement. I've now passed my third week out of hospital and am feeling stronger each day and, more positive. I'm feeling in need of time well away from anything connected with the hospital as after 3 surgeries and numerous rather unpleasant 'procedures' I can't at present contemplate anything else. However, I do feel some of my old resiliance returning so I'm hopeful that mentally I will feel in a better place in the coming weeks. Unfortunately time is a big factor here and I do feel the weight of expectation building- that I will have the chemo - as I know everybody wants me to - my doctors and my family.

At the moment taking each day as it comes and for the first time in months (my feeding tube came out yesterday.Yipee) actually enjoyed a lovely breakfast this morning.

Best regards

RD

Hello Norberry,

Thank you for making contact.

RD

Hello ruthjp,

Thanks for your response. The rain has stopped here in Norfolk and we now have blue skies and sunshine - just right I would think for a bike ride. Best of luck to you too.

RD