Hello

Hello Mumkins

Welcome to the OC forum, I know this isn't where you want to be but I can assure you that normally posts are responded to a lot quicker than I have replied to you.

I am sorry to read that surgery at this stage is not an option but pleased to hear that combined therapies are going to start from Monday, the wait is nearly over and although I imagine it is quite a scary time for you, the possibility of a successful outcome is something to keep hold of.

My husband was diagnosed with inoperable OC in May 2020, he was never offered Radiotherapy, possibly due to the additional Mets in his lungs, liver and lymph nodes. But he was offered Chemotherapy and after responding really well to that his treatment changed and includes immunotherapy alongside chemo.

After his first Chemotherapy treatment my husband found that eating became easier, obviously not everyone reacts the same but I do hope that it makes things somewhat easier for you as quickly.

Please let me know how you get on, and don’t forget to call the Macmillan team if you have any questions, their number and answering times are in my email signature below.

Wishing you all the very best for Monday and on-going 

Lowe'

Thank you so much for your encouraging post.  I needed to hear from someone for whom the treatment has been a success.  I am now on liquids only but hope once the chemo starts I may be able to eat something.  The Radiotherapy is going to make my food pipe very sore so they are looking at possibility of feed tube.  Sounds awful but I know I’ll need to keep my strength up.  How is your husband now?  I will certainly keep in touch and will phone Macmillan when I’m feeling down.  My husband’s been amazing but in the end it’s what goes on in your own head that can make the difference.  Thank you again x

Hi just wanted to reply as I was also unable to eat properly at diagnosis and living on soups and smoothies  for a while, and at points even these were tricky to get down. I kept my weight up with blended avocado, nut butters, coconut milk and later on hummus, and my weight was stable. 

Two weeks after my first chemo swallowing began to improve, two weeks after the second chemo I was back  eating normally. I didn’t have radiotherapy but did have a complete response to the chemotherapy, amazingly. I think eating healthy and giving your body all the nutrients it needs helps tolerate treatment and helps healing. I did find this person’s experience of chemo radiation when I was researching at the beginning and thought you might find it helpful. 

radicalremission.com/.../

Dear Hansharp

Thank you so much for your encouraging response.  I would love to be able to eat again soon.  I've just started radiotherapy and chemo starts on Wednesday.  I am having trouble swallowing anything other than liquids now.  Even a small lump in soup can cause problems.  My tumour is in the middle section of my oesophagus but it feels like it's in my throat.  Ive been told its inoperable because it's bulging into my windpipe but hopefully that will change when it's shrunk a bit.  Also I'm 66, are you much younger?  Did you have the nutritional drinks? and one last question, did you not need a feeding tube at all?  Sorry for all the questions, it's good to hear from someone who's been through it.  I'm very pleased that you have and it encourages me to be optimistic about the future.  

I had trouble getting thick smoothies down and found it pooled at the end of the oesophagus by the tumour, then took ages to trickle through. If I ‘chewed’ the liquid first it seemed to help but there were soups I couldn’t eat, lentils with skins for example as the skins would get caught on the tumour.

I didn’t use nutritional drinks as prefer to get my nutrients from fresh food and was thankfully able to do that. I just took my time and didn’t rush or worry. By this stage it could take an hour to get a  smoothie down. I just sipped slowly and waited. My weight was my guide as to how it was doing. I found Nola’s experience in the link really helpful to manage my expectations. No feeding tube as I was able sustain myself but everyone is different. 

I am younger, I’m mid forties. An outlier according to the doctors and please don’t apologise, I know how it feels. I hope that the chemo brings you some relief and things get easier for you. 

Im due to have surgery on Friday so will be back to soups and smoothies again too for a while. 

I hope your surgery goes well on Friday.  I’m trying to have homemade wholesome soups as well as the drinks but it’s so uncomfortable now, feels like the tumour is in my throat.  Food takes ages and trapped wind is causing me pain and nausea.   I’ve got first chemo tomorrow so it might help.  Can they laser a tumour in that position?  I’m trying to be brave about it but inside I’m really worried.  Please keep in touch when you’ve had your op, I’d like to know how you’re getting on. 

Sorry you are suffering so much with eating it really is a difficult and anxiety provoking time. It was a huge relief to be able to burp again, which I now seem to do frequently! I also had trapped wind on and off which was mega painful and unpleasant. Homemade ginger tea helped. I lost my appetite during chemo and ended up mostly fasting for 4-5 days, always managed a carrot and ginger juice though, then made up the calories when my appetite returned.   

I really hope the chemo works it’s magic for  you. I will keep in touch. Wishing you all the best for today. 

Sorry for the delay in coming back to you Mumkins, it has been a busy week.

I hope that you have found your first experiences of your treatment as not being too difficult, and that shortly your swallowing will improve, 

Looking at your questions to I wanted to let you know that my husband did have the nutriment drinks initially due to his weight loss, he was having 4 a day for a few months and then over time, reduced them down to not needing them at all. He never had a feeding tube either, although this made the initial months uncomfortable overall it was for him the best decision.

Today will mark his 29th chemotherapy treatment, 24 of those containing trastuzumab immunotherapy treatment and although this will continue (currently indefinitely on a fortnightly basis) on Tuesday he was advised by his oncologist that he last scan on June 25 shows no identifiable disease and no discernible issues , so although this does not mean that Dal is out of the woods, it does mean that he has a clear visual path in front of him which is exceptional news. We are now reliant on Dal continuing to manage the treatment, which we hope will continue to blast any cancerous cells as soon as they start to develop and as he has already passed his prognosis, we keep looking forward to the future that not too long ago we had wondered whether we would have. 

All I can say is, please allow yourself to remain as confident as possible, imagine your treatment as your lifeline, your link to your future, embrace it, and if possible do not fear it. Hopefully it will be as good to you as it has been for Dal.

Thinking of hansharp today, I hope the surgery goes well

Lowe'

Dear Lowe

Thank you so much for your encouraging and uplifting reply.  Your husband has really been through it having had 29 chemo sessions but I’m so glad to hear it’s finally paid off and as you said the future looks brighter for you both.  I’ve had my first chemo and 4 radiotherapy so far and found it has made a difference already in my swallowing, it’s just a little bit easier and I can eat Ready Brek without retching!  Early days yet, I know, and the steroids have buoyed me up today.  I know what you mean about seeing the treatment as a positive experience.  I do feel like that as I so want to get through this and I know that Addenbrooke’s are doing everything they can for me.    Having had breast cancer twice I must admit it hit me hard when this came along.  But you can’t feel sorry for yourself for too long as you have to pick yourself up and get on with the journey.  All the best to you and Dal, a loving partner makes a huge difference.  My hubby, Alan, has been so supportive and we’ve both realised how precious life is.  I wish Hansharp all the best too, she may read this when she’s feeling okay after her op.  Keep in touch, and thank you again for your helpful reply x

Ps. I am also hoping to get through it without the feeding tube - not keen on that idea but if that’s what it takes it will have to be.

Hello, I just wanted to pop by to say thank you for the good wishes. Pleased to report the surgery went well and I am Home already and taking it easy. Was not as bad a I had feared and eating has been fine so far. Had a delicious cauliflower and cashew nut soup yesterday.

How are things with you Mumkins?