Small bowel cancer

Hi  

Good news that your mum is through her chemo.  I can't believe I am 1 year past the worst of mine, and finished it all 10 months ago.

Glad to hear they are keeping a close eye on your mum, I agree it does sound frustrating as I think most of us would rather know one way or the other, rather than it might be / might not be....

I am doing okay, having seen my oncologist in the summer and my surgeon more recently (I had to have a follow up operation for an incisional hernia, nothing to do with the cancer, just the way they sewed me up when they took out my tumour).  I'm on 6-monthly oncology check ups and annual surgical check ups, unless I spot something myself in between.  In general this is good, as life feels pretty normal and I'm doing more less everything I was before cancer.

I do still get a bit of neuropathy, especially in the sides of my hands/wrists where I had the cannulas for the chemo but this is infrequent but sometimes it is an unpleasant surprise.  I'm told it should eventually stop.  Also it can be a bit nerve racking knowing what is the new normal for the colon/bowel operation, as my 'new' post Whipple system is different to what I was used to so that has been a learning exercise.

Hope your mum recovers from her chemo side effects quickly and can look forward to less hospital visits, once she gets a bit more clarity on her current situation.

Cheers

Hi Dean1987,

I was reading your amazing story and I was wanting to see how things were going for you today. My mother was just diagnosed with Stage 4 Adenocarcinoma of the small Bowel. It’s 2021 and I’m hoping some of any strides have been made in the time since your original diagnosis. Many stories are grim or they are outdated or apply to Colorectal Cancer. My mother cannot get surgery given the spread is what I understand, but I was wondering if just being able to receive Chemotherapy wouldn’t still be a fighting chance to be in remission. She gets her first chemo tomorrow. Did you get a second opinion? 

Shay

Hi everyone,

just wanted to give an update on my hubby.  He had stage three small bowel cancer in the jejunum and that spread to the regional lymph nodes.  He had surgery to removal the cancer and then had 6 months of chemo to make sure they did everything they could to rid him of the cancer.  That was back in 2017.  Everything seems to be going well and he made a full recovery minus some neuropathy in his feet from the chemo.

He has had six month follow-ups with oncology and yearly follow-ups with surgery.  Currently he needs to go back at three months because his hemoglobin count is going down steadily and he's lost about 25 pounds in the last 6-8 months.  I can update you after he goes in this week.  I'm wondering if this is related to his cancer or if it's related to the diabetes he's developed.  Who knows?  There is just not enough information out there.

Hope you are all doing well, my thoughts and prayers are with you.

Hi Lisa, 

Your husband seems to have done very well after his initial operation and chemo. I hope that this weeks review goes well. 

Best wishes to you both

Hi Lisa - hope your hubby is doing okay - the weight loss must be a bit scary, what a rollercoaster ride for you both!

Just a comment on the neuropathy in the feet - I also had that after chemo, I'm now coming up on five years since the end of chemo and the effect has really slackened off, and it was very noticeable, then somewhat noticeable, and now not really at all.  A small thought of positivity, within the bigger picture of everything else you have on your mind right now!

Thinking of you both as you wait for more definitive news on the latest situation

Thank you Linds and Salis, I appreciate your feedback and kind words.

Hugh's appointment and labs went well this morning with the oncologist, but he continues to lose weight so they think it's related to his diabetes.  He's going to go and meet with a dietician next week and hopefully they can help him.  His blood work seems within limits, but he keeps losing weight.  It's an emotional roller coaster every three to six months.  Wish it wasn't always in the back of my mind that the cancer is coming back.  Such an unknown.

I really appreciate hearing from others who understand, it means so much.

Have a fun weekend!

Lisa

Hi Lisa,  I was just wondering what kind of chemo your husband had?  I am new to this group and was diagnosed with a T2N0M0 adenocarcinoma of the jejunum.  The doctor surgically removed all the tumor and follow up PET/CT was clear, but they have offered chemo since I am 40.  They have completely given me the decision to do chemo or not, so I was just wondering what kind he had.  Would love to know.  

Thanks!

Brandy

HI Brandy,

Hugh had the 5-FU for 6 months.  He was hooked up for three days every two to three weeks I believe.  The chemo wasn't great, but he was able to work for most of the time while he was getting it.  

Hugh is totally cancer free still after the surgery and chemo.  He was in his late 50's when he was diagnosed.  The physicians still do a scan and run labs every six months to make sure all is well and it is.

Best of luck to you!  It sounds like the chemo would be preventative since the surgery was successful and that's exactly how it went with Hugh as well.  He did the chemo to make sure all of the cancer cells were dead and gone.

Take good care,

Lisa

Hiya, 

How are you doing today?

Thank you for responding, Lisa!  I really appreciate it!