Has anyone outlived their prognosis?

I'm so sorry for what you are going through Mowgli65.

I am not sure I can give a helpful answer but I can guarantee other people on here will have some good advice. There are also Macmillan nurses on here who are very used to your predicament.  I am sure someone can point you in their direction.

I kept my troubles secret at the beginning to help my wife, I don't think it was a successful ploy because she had to find out in the end and she did.

You are in a difficult spot but I know there will be answers coming to you very soon. Best wishes. Xx

Thankyou

Thanks Norberry - having my next ct scan in the middle of Feb. Best wishes sent to you too x 

Hi I am new here diagnosed with cancer in my spine on 17th December 2020. Just want to know if anybody on here has had oral chemo Thanks.

Welcome Boobylou. I cannot help you on this but I guarantee there are others on here who can. Best wishes.

Hi Boobylou I had a similar experience, I was diagnosed with metastatic bone cancer a year after aggressive treatment for recurrent breast cancer. I've had oral chemo twice since then. The first time I had to stop during the 2nd cycle because of side effects, and was then stable for several months on half the dose. I've recently started another round of oral chemo, and again had to stop during the 2nd cycle because of side effects. So far so good on a 20% dose reduction. With IV chemo you get the full dose in 1 hit, usually in hospital. With oral chemo you build up gradually to the maximum dose so there's more wriggle room if you are having side effects and you have it at home. I have medication to help deal with the side effects and monthly denosumab injections to protect my bones. Good luck with your treatment, I hope it keeps you stable with minimal side effects for a long time. xx 

So sorry to hear your situation .  Speak to your husband, if you feel you need to know then you should, I would struggle keeping a secret like that from my partner, I also think it would be unhelpful. If your husband doesn’t want to know then that’s fine but shouldn’t stop you knowing it also doesn’t mean you need to hide that you’ve asked from your husband.  It’s hard for both of you, explain how you feel, when you have energy think how to prepare yourself, my mother made it known where her favourite items were to go, my father sat me down and explained his finances, I’ve made my will and ensured my wife knows everything so bills and finances are known.

Hi Boobylou

I'm so sorry to read of your diagnosis,  life can be so cruel and you have had a tough few years recently. I wish I could have met you elsewhere though, rather than here but we're on this journey together and thank you for joining us, you have chosen well to come to our little group where you will enjoy friendship, support and togetherness. 

I'm afraid I can't help you with the oral chemo as I've never had any but there will be some here who can. I was diagnosed with MDS, a rare bone marrow cancer, in March 2015 and have had weekly treatment since then. 

It's so tough that we can't be with our loved ones because of Covid but we will be together with them very soon. I'm in Northern Ireland and I have a daughter, sil and lovely grandson in Peterborough. She's pregnant and due in May. We haven't seen her since last February and she really misses her big daddy hugs. I also have a son in Aberdeen who was married in Bolivia last July to a lovely Bolivian girl who he met in uni in Aberdeen. So it's tough for us that we can't be together as a family and it's that which is spurring me on. 

So Boobylou, it's lovely to be acquainted with you, and I hope you can enjoy our friendship for many years.

Take care and stay safe Boobylou

Tvman x

Hi there and a warm welcome to the group

Hi Mowgli65 A warm welcome to the group and to Boobylou and Tom also! I don't think I have chatted to any of you Yet!

Mowgli, when I went to the Oncologist for the first time my husband was with me and when she said Stage4 (it was new to me too I knew what she was saying, but my husband hadn't a clue). He said, "oh well, thats not too bad then! Are there 10 or 12 stages?" My oncologist said NO just 4. My husband was in pieces and while the SCN consoled him and gave him a glass of water, I asked the oncologist could we leave it there for now,until I had explained to him myself how we stood. She said to come back the following day as she couldn't leave it any longer as I needed surgery to save my arm. (Long story). We sat up all night hugging one another and crying together and after I EXPLAINED EVERYTHING my husband he said how sorry he was that he'd cried in front of other people. From now we were in it together! As most of you know, I was given 5-7 months in May 2013.

We have 2 adullt children who made us promise we would keep them updated and not hold anything back. Our son was getting married at the end of May so it was decided we wouldnt tell the bride until after the honeymoon. I didn't want their wedding to be about cancer and not a joyous wedding day. The only other person we told then was my older sister as i knew my younger sister couldnt handle it.

This is about you, not your husband, so I would try to get him to talk to someone, what about your adult children, they could support you both! Our daughter asks her dad but our son asks me how I really feel! You can see from these posts knowing a prognosis is a waste of time, especially if they are offering you treatment. So you  are not terminal but incurable (like the rest of us here) but treatable!  Good luck!