Hi all, had great news today, Had Butch's test results after call to nurse to discuss his swallowing problems. Cancer hasn't spread - so very, very relieved. Butch doesn't need to have an operation, treatment will be radiation and chemo - letter in post telling us when, Butch thinks she said this coming Monday at Preston (the sooner the better I say). We know it's going to be hard on him but it has made such a difference to Butch knowing that it hasn't spread, it's like a weight has been lifted, he just now wants to start treatment asap.
Butch is an ex-Rhodie who fought in the Rhodesian Bush War and is foundly known as "The Bushman" by family and friends - he's a fighter so we are keeping very positive and strong. We would like to thank everyone for their help and experiences and our best wishes and prayers go out to everyone on this site. Will let you know how things go. Chrissy & Butch
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Just thought I would say that I know somebody who had Chemo and radiotherapy together after having further trouble a long time after original surgery, and they are still alive and well.
Phil, thank you so much for taking time to send best wishes. We see the specialist on Monday afternoon who will discuss everything with us and talk about clinical trials. As we do not know at this stage what stage it's at I will be taking Lyn's advise and asking lots of questions and will be armed with my notepad. Hope everything goes well with your scan, we'll both be praying for you. Chrissy
I'm so thrilled for you both.You are on the home straight now.
Just in case it is suggested as part of Butch's treatment plan I had 4 sessions of Chemo with Cisplatin -- and ,honestly , I did not find it seriously unpleasant; certainly nothing to dread.
Thank you so much for your encouraging words. We were at hospital yesterday to discuss treatments with doctor and discuss a stent as Butch has been having trouble swallowing. Doctor said they would arrange a stent as Butch has lost weight since this all began and since his swallowing issues has lost a bit more. Appointment for stent is booked for Thursday but they are trying to get him one for Wed then we will try and make up the weight loss. Butch's chemo starts 24th April (day after his 69th birthday), he will have 2 sessions of chemo with Cisplatin and 5FU (Fluorouracil). 1st: stays in Preston for 4 days and comes out on 5th day, has a 3 week break then goes back. 2nd: 1st day has chemo then they put a line in his arm and has a bag with drugs in, he then comes home that day and treatment continues at home for 3 more days. After that he has radiation - 25 sessions over a 5 week period, we were told that they will arrange for ambulance to pick him up, take him there then bring him back after his treatment which is great as I work full time so stops me from taking all my holidays at same time. Sounds like a very aggressive course of treatment but we are hoping and praying that if he can have few side effects from chemo then he will take the radiation in his stride. He is getting quite impatient now as he just wants to start the journey. Still thinking positive though we know it is a long, tiring journey but hoping to end it on a "good news" note. Will keep everyone informed of his progress. Chrissy
Here is the URL of a Sloan Kettering video which will give you really authoritative statistics regarding Chemo/Radiation/Surgery and combinations of all three.
Jonathan, thank you so much for this, extremely interesting, makes me feel so much more confident that Butch will indeed be getting the best treatment possible.
A question, Butch had a stent fitted yesterday afternoon, by the time we got home is was in so much pain which continued all night, it was very very bad, I never seen him in so much pain - he was sipping water only, burping and lots of thick mucus came up but he was also heaving and the pain went through to his back - is this normal? He managed to get to sleep after medication and when he woke up this morning still had pain but felt a lot better. Rang nurse but she didn't seem to be worried and stated that yes there will be some pain for a day or two. As day progressed Butch still in pain, sleeping a lot managed to have an Actimel and 2 cuppa soups but then wasn't feeling good and wouldn't try anything that I suggested so went to bed at 7.00pm - my worry is he starts his chemo Wed and I don't think that 5 days is enough to try and get his weight up - should I ring nurse and postpone so I can fatten him up? I just don't know what to do for the better - everyone states that you should be fit for chemo - any suggestions would be welcome. Chrissy
I am not qualified to give advice regarding Stents and so cannot risk misleading you to Butch's detriment .
But I have read the following -
Pain indeed is to be expected for the first 2-3 days ;it sounds as if he is getting more comfortable rather than less.
The higher up the Esophagus that the stent is placed then the more discomfort that may be felt.
If his condition suddenly worsened and he exhibited signs of shock then that might indicate the rare event of a split or tear--straight to A&E.
Regarding weight--
What height is Butch/what was his normal constant weight/what has his weight dropped to now ?
I think you can be confident that your team would not be proceeding with the treatment if they had any reservations about Butch's fitness.
Even if the stent is completely successful it is likely that for at least the first week he will only manage liquid foods so meaningful weight gain is out of reach.It's much more risky to delay attacking the Carcinoma.
As for me--in the year prior to Op I went from 13 stone to 10 stone.In the year post Op I went back up to 11 stone where ,with some difficulty as I eat everything,I have stayed.
Many of my family are Spanish speaking and they have given me the nickname "Flaco" which translates as " scrawny " but hey as I tell myself it's the parable of the hammer and the nail (Butch will understand that )
Jonathan, thank you so much for this info - did manage to contact Butch's nurse today and she explained that if he was underweight at start of treatment they would feed him up while he was having treatment by tube. I am glad to say that today has been a good day for Butch, he's controlling pain with meds and managed to have a yoghurt for lunch + a Complan Smoothie and managed to eat a few mouthfuls of mash and baked beans mshed this evening, he's drinking lots of water and coke. He's 5ft 8 having shrunk in old age from 5ft 11 (something he's not happy about ha ha) and was 13 stone, he was weighed on Wed and has gone down to 11.5 stone. As he hadn't eaten for 3 days he's probably lost a little more, so probably 11 stone now. I now feel better in myself that treatment will start on Wed and they will help with eating issues, my main aim between now and then is to get him to eat as much as he can to put on that half a stone lost. Take care and once again thank you so much. Chrissy
Great news.I hope Butch realizes how lucky he is to have you.
Just one further thought.This condition can have a negative effect on the body's calcium metabolism. Bearing in mind Butch's shrinkage ( my own has been 4 inches ; so I sympathize !)when the moment is right you might want to ask a member of his team whether a bone density scan would be a good idea.It only entails 15 mins having a thigh scanned in a special Xray machine.Could be useful in establishing his base line at the outset of treatment so there is a reference point for comparison at the completion of his therapy.It may also be a pointer for a specially formulated diet.
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