Hello, I'm new here - Stage 4 Esophageal Cancer & Chemo

Hello curlywurly19

Am very sorry to hear about your dad. My dad was diagnosed with OC around a similar time. His scan results were T2N0M0 at the time. Although my dad's situation is a little different to your dad's he is still going through the chemo treatment and just had cycle 3 of 4 today. He will be having an operation in the summer after a 6 week rest from the chemo.

It's such a sad situation to be in, heartbreaking really. I'm sure the chemo will help your dad. Just be there for him and try to be as positive as you can (which is really hard at times) I'm sorry I can't advise more. Take care and do keep posting when you can x

Hi CMJ78,

Thank you for messaging and your advice which I reaaaaally appreciate.

I'm so sorry to hear about your dad... thankfully it looks like he was eligible for surgery which I find a little more encouraging as it's actually being removed rather than chemo alone. I hope what's left of his chemo goes well and surgery is successful.

My dad is on Paclitaxel & Carboplatin and feels rough from sort of day 3/4. His swallowing improved after the first couple but now he says it's getting more a difficult again so I'm a little worried - let's see what the midway CT scan says though.

It is tough, and I'm not sure I've quite processed it yet as I've been the one organising, running around and making sure everything is up to scratch on all fronts. I keep telling him that he's the one going through the actual treatment, but I feel like I'm going through it just as much as we go to all the appointments together and what not.

I'm 28 and dad is 61 and never thought I'd be going through something like this whilst we're both so young.

Keep fighting and keep your chin up x

I know exactly what you mean curlywurly19. Even though it's our dad's going through the actual treatment, you are going through it all with them. Emotionally it's exhausting, the stress, the worry. I can totally relate to that. My dad is 71, he lives alone          (mam passed away 9 years ago). I thankfully live next door to my dad, so I'm popping in every day and checking on him. My dad is on FLOT chemo, so different to your dad's, but the sad situation is similar. Its heartbreaking that the ones we love have to go through all this...it's so tough. Is your dad having a PET scan or a CT scan? I'm hoping my dad will have a scan at the end of his 4th cycle. We are desperately hoping  the chemo has reduced the tumour. I wish you lots of luck to you and your dad. I do believe treatments have come a long way in recent times. You never know, sometime miracles do happen. Sending positivity and strength to you both x

Hi Curlywurly19

So sorry to hear about your Dad and what you are going through. My mum (65) has recently been diagnosed with a similar prognosis with her oesophageal cancer being both incurable and inoperable. We saw the oncologist yesterday and she will be having Chemo with immunotherapy starting with 3x3 week cycles potentially continuing for another 3 depending on how she copes and any improvements achieved. She is unable to swallow at the moment and is being tube fed which has already impacted her confidence and is understandable very frightened about what is to come. She lives alone with only myself nearby so I am supporting her as best as I can whilst trying to remain positive. 

Hi Milerkins,

Just read your story. A very tough position to be in for you both. I assume the cancer has spread in your mum's case or she has other health concerns that prevent an operation. 

I have found my cancer nurses to be of great support and more than willing to speak with you about any topic. If they don't have a ready answer they find out and call me back. They have called me a couple of times out of the blue just to ask how I am. It's so comforting to know others are thinking about you even if they can't physically help. I find talking and being open about my condition helpful. Posting and responding on here helps too.

I have stage 3 Oesophageal cancer. I should be starting chemo around the 9/6. Then an operation after that and then more chemo.

If I might ask, isn't there any possibility of an operation if your mum's cancer responds well to the chemo? I'm no medic but I thought immunotherapy was a specialised treatment for cancer cells that have been identified as having the HER2 protein. Making it a very good and targeted protocol.

None of us know when our how our lives will end but end it will. A car crash, a heart attack, cancer, who knows? Mum is not going to be taken from you in the blink of an eye and no matter what you've been told, miracles happen and your mum may have a good life for some years yet. Make every day count.

All my best to you both.

Geo.

Dear Geoferret

Thank you for reaching out and I'm sorry to hear about your diagnosis.

My Mum's has spread to nearby lymph nodes but not to any other major organ. It is very large and long pressing on a heart valve, her windpipe and gullet which is why they've said they can't operate.

I have called the specialist nurses a few times and found them very understanding and ready to answer my queries and concerns. There was some miscommunication early on regarding my mum's diagnosis but when I called them up they went through everything very clearly with me. I'm glad you are being supported and taking comfort in their contact. Do you have other friends and family supporting you through this too?

I think due to its size and position it has restricted her treatment options and even though everyone is hopeful for treatment to make a positive impact the consensus from all parties is this is for disease control to improve her quality of life and survival but as you say miracles can happen and she's very stubborn so I'm keeping my fingers crossed!

Wishing you well on your journey and know we are here with you if you need to talk about anything.

Millerkins

Hi Millerkins, thank you for the clarification regarding your mum's position. When people say there can be no operation I often wonder why and what it is that decides that.

I am very well supported thank you. All my friends, family and loved ones know now that I have the cancer. It took some time before I decided to tell them. Now I'm molly coddled all the time....lol. Some times too much, it can have the opposite effect of making you feel as if they are fearing the worst and want to do as much as possible. I know there care and support is born out of love and wanting to help but I'm very capable at the moment and don't feel at all unwell other than the swallowing bit. Maybe I'm more poorly than I think...lol. I'm very positive that after all this, things will get better.

Best regards to you and all your family.

Geo 

Hi curlywurly19

i was diagnosed with same back in January (T4, N1, M1) metastasis into bone in spine. I was given same prognosis ie. Palliative care, inoperable because of spread to bone. I have now completed 4 cycles of chemo and bone therapy (Denosumab), the chemo is every 3 weeks and includes a 2 hour infusion of Oxaliplatin along with steroid infusion plus steroid tablets for 4 days after and capacitidine tablets every day in between Oxaliplatin infusions.

There are many possible side effects from the chemo and I can go through the ones I am suffering in a further post if you are interested.

After the 2nd cycle of chemo I was told I was eligible for immunotherapy treatment as well as the chemo due to the high percentage of PDL1 surrounding my cancer cells. Basically PDL1 stops my own body from fighting the cancer, so to block the process a PDL1 inhibitor is used, this allows my own immune system to attack the cancer cells. The immunotherapy drug I was offered is called pembrollizumab (brand name Keytruda). I have had 2 cycles of this alongside the chemo.

I have 2 more cycles of chemo to go then a break but I will stay on the immunotherapy for 2 years.

Don't know if your dad suffered with Dysphagia (difficulty swallowing food) before his diagnosis but that was what sent me to my GP for investigation (endoscopy). On a positive note, after 2 cycles of chemo I was able to eat normally again and this has continued to be the case.

I hope you dad has the same positive results I have had, it will be a tough journey but he will get through it with help from yourself family and friends.

If you would like any further info please get in touch, I had another CT scan after cycle 3 and am awaiting results next week to see if the tumour has shrunk (think it has) and by how much?

Keep posting and good luck.

Hi Old Grey Whistler,

I am ever so sorry to hear of your diagnosis and the journey you're now on - I hope your scan result is positive, and do share the results with me if you wish to (I'll be thinking of you and sending lots of positivity your way either way )

I'm not sure how it's going to work with Dad as he has only been offered chemotherapy so far. Surgery was a no-no and they said radiotherapy was also off the table; however, immunotherapy has not been mentioned at all and I'm not sure when this would be offered or even if it would. He's just completed his 4th cycle of 8 and has started to feel the chemo side effects a little sooner this time around.

Yes, he had severe dysphagia (we got to only being able to swallow liquids) which resulted in an endoscopy which showed the cancer straight away (this of course was confirmed by the biopsy results). His tumor in the esophagus is 8cm long and covers 2/3 of the way around, has spread to a few lymph nodes and has been found behind his pancreas albeit not on it or in it.

His swallowing improved after the first cycle; however, he says it's starting to be a bit more difficult again. He always seems to see an improvement after the chemo but it wears off after a little while so it's better than it was when he was diagnosed, but still not 100%.

Thank you so much for sharing your journey so far and I wish you the best of luck. Keep your chin up and keep on fighting!

Hi Millerkins,

Thank you for your message and I'm so sorry to hear about your journey with your Mum.

Wishing you all the very best and sending lots and lots of positivity your way.

Keep your chin up xxxx