I spent over 2 hours with a migraine waiting to see the cons radiologist whilst my notes came in a taxi from one hospital to the other to discuss my radiotherapy options. I felt so poorly, my friend had to take me there by wheelchair with a cold compress on my head and dark glasses!!
Basically, the bony mets have grown and now in 3 vertebrae in my chest region and left shoulder blade and extended in my ribs so that explains why my pain has been so bad. They want to try to hit my bony mets with rads as well as the solid tumour in my lung that is squashing my oesophagus to try to shrink it so I can swallow better. She can not guarantee that it will work and the rads will cause such inflammation and pain I won’t be able to eat for 2- 3 weeks so it is a difficult decision about when to have the rads.
We are also trying to fit it in so am well for our holiday - destination unknown for 2 weeks from 16th August and hopefully be off chemo for the whole of the school hols.
The gem/carbo I’m having at present only helps with my swallowing for 2 out of the 4 weeks but my breathing remains good. So I need to decide whether to have 1 or 2 more gem/carbos and when to have rads. My last gem/carbo would be 10th July and previously have only ever managed 6 =8 weeks off chemo before my breathing and swallowing deteriorates to the extent my quality of life is too poor.
The plan after that is to start weekly taxol in September if my breathing will hold out that long off chemo.
Seeing cons for chemo next thursday now as not well enough for this week.
Any thoughts? I just wanted to see if anybody had experience of having rads to oesophageal region and for your thoughts so I can make a more informed decision.
Thanks
Kate
No experience, Kate, of rads to the oesophageal region but did just want to say that I’m thinking of you. Really difficult decision to make and like so many of these decisions, probably you’ll only know whether it was the “right” or “wrong” one in retrospect (and maybe not even then!). So hope someone can give you a bit more information so at least you feel it is based on some facts.
Really hope you can get that good summer that you want (and deserve).
Lots of love
Kay xx
I’ve no experience either. Have you tried the help line on here? They might be able to help you weigh up the pros and cons.
Sometimes I find it helps to physically write down the pros and cons of each course of action then it’s easier to see and compare.
Good luck and happy holidays.
Kinden
x
Hi Kate – what a tough time for you right now, and I’m so sorry to hear you were so unwell at hospital today. I know how much you want to be in your best health for the hols in August with your family. Although I haven’t had rads for a lung tumour, I remember that it took a little while for rads to my bone mets to “kick in” and reduce the pain/swelling, etc. I guess I’d be tempted to have the rads sooner, rather than later, with a view to dealing with the pain, swelling and dietary side effects before you go away, but you might well benefit from a discussion about chemo/rads timing with someone from the BCC helpline, as Kinden suggested, or your Mac nurse or hospice doc/nurse.
Sending you love & strength – Marilyn xx
Hi Kate,
Sorry to read you are having to make yet more horrid decisions.
Could they put a stent in, to make it easier to swallow? I have a friend newly diagnosed with oesophagus cancer so have been looking into these options for her. On Cancerbackup there is some good info - though I imagine you will probably have looked into this yourself, before now.
Sorry I can’t be more helpful and hope you are feeling better after last hossie trama.
Jenny
x
Hi Kate
Like the others I can’t offer much in the way of practical solutions but as always am thinking of you and your family. I understand entirely how important it is for you to have a good summer with your kids, that was what informed my decision to go with xeloda rather than taxotere at this stage, my husband and I discussed it at length, but as others have suggested it might help tp talk to someone outside the situation as I know from previous posts that you have found the hospice helpful
Sending you very best wishes Kathryn
Hi Kate
sorry to hear you have been in hospital again hope you are feeling better.
I had rads on top of spine in Feb they said I may get a sore throat and feel a bit tired. A couple of days later I could smell what I thought was a burning pan kept asking hubby could he smell it no just me throat was getting more uncomfortable by the hour then I couldnt swallow. The smell was my throat! The rads had burnt my oesophagus I was having taxol every week so they kept an eye on it but it was bloody uncomfortable for about 4 weeks and I could hardly speak. I hope I havent scared you this is what happened to me and may not be what happens to you. I know from reading your posts you always give a truthful account of your experiences so hope I have not put you off. Just ask them is there a risk of burning.
Whatever you decide I wish you luck and will be thinking of you.
Love Debsxxx
ps My voice is back full throttle just a bit of a problem with food going down wrong hole! x
Debs - no you haven’t scared me. You’ve described really what the rads cons said - well apart from the smell of burning.I’m having so much trouble swallowing now and just hope it works. Thinking of asking for fentynyl patches for pain relief during that time as ca’t see oral tablets are going to be possible and don’t think continual oromorph would be a good idea either.
Hope your swallowing improves - it’s miserable isn’t it.
Thanks for your honesty
Kate
Hi Kate
miserable yep but I lost a stone! so ther was a plus.
Love Debsxxx
Hi Kate,
What a rotten time at hosp and hard old decisions to make. Is your onc sensitive to your wishes eg. about the summer hols? I really hope you get some good advice.
Couldn’t believe Debs being so honest! But it just goes to show (from your reaction) how important it is to hear the truth, however unpalateable. It’s rarely worse than we are already imagining, eh?
About to say a prayer for you, in the absence of a magic wand…
Big hug
Jacquie
nb - go with fenantyl - I’m on it and it does make life a lot easier re tablets, and works perfectly well. Only drawback is you might feel a bit noticeable with them on upper ams on holiday if you go anywhere hot…
otherwise I recommend them any day. Less constipation too
Susie
Jenny - I asked about a stent and they said they work well when the cancer is in the oesophagus but do not work well when the tumour is on the outside and is pressing in. IThank you for reminding me about this as I will ask next week for a referral to a gastro surgeon to get his opinion. Also thanks for the info re the other memory books and have ordered one of them for my hubby as it looks more suitable. Spent quite a bit of time doing the Dear Mum one whilst I was in hospital and the one for my sister. It was quite fun and not as depressing as i thought.
Sorry - now I’ve hijacked my own thread!!!
Kate
Sorry kate hijacking your thread too now, wot is the other memory book for hubbies, as would like to get him one. Got the Dear Mum ones, but nothing for OH.
Thanks
Dawn
x
Hi Kate
I keep reading your post and I keep avoiding replying. I think it is because I don’t know what to say only you can really decide. I know what you mean about wanting to have a summer with your children without the chemo. I hope that you can sort things out.
Anyway I just wanted you to know that I am thinking of you
love CAroline
Hi Kate
My mum had rads to the top of her diaphram but they caught her oesophagus. She had the rads for 5 days in a row. The pain took a few days to kick in. She hardly ate anything for 4 weeks, she couldnt even really swallow the complan drinks. In the end she liked to suck on grapes. When she did try and eat it was painful and she always had to bend forward as if she was struggling for breath to get the food to go down. She tolerated it well and it did die down after the 4 weeks and she was able to eat very well again. She wasnt told at the outset how painful it would be, and that was what upset her as she wasnt expecting it, her onc said that it would probably be painful for a few days! He said after that he said that so she would do it! But although it was hard she did say that she would consider doing it again should the need arise, and from what we know it did the business on the residue of the tumour after her chemo. Hope that helps please feel free to ask anything and I will try and remember. Joanne