Hi, stage 4 colorectal cancer here

Posted by wifemom3 @wifemom3, Apr 23, 2022

Hi. I am new to the group. My name is Michele and I am located in Florida. I was recently diagnosed with stage 4 colon cancer on January 19th 2022.
I am currently on my 7th round of chemo. Is anyone else newly diagnosed with stage 4? Looking for a little support.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@colleenyoung

Hi, Sue. You posted exactly right and in the right place to connect with other members living with metastatic colon cancer like @margreet @wifemom3 @lisag03 @fiona007. I'm adding their usernames to my message to make sure they see your post and join me in saying "Welcome".

I bet it was disappointing to have to pause chemo for 6 weeks while you waited for your white blood cell count to recover. I'm glad you're back on track for the time being and getting Neulasta to help encourage the white blood cell production. How did your chemo treatment go last week?

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I wish you strength and don’t give up. I have been through that and am now in my fourth year in remission. My best wishes to you.
Margreet.

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Hi,
My mom was diagnosed with metastatic colon cancer in december 2021. Her oncologist told us the cancer had spread to her abdominal lining , 2 lymph nodes and has about 5 to 6 lesions on her liver. The doctor decided to start her treatment with oxaliplatin and capecitabine a regimen of 14 days with 7 days off. After 8 rounds of oxaliplatin they had to stop due to really bad side effects of neuropathy, now she is on avastin and chemo pills. Recently we spoke to the doctor about my mom not being able to eat due to the change of taste in her mouth and the doctor decided to lower the dose of capecitabine. My mom has told the doctor about having pain in her lower back but dr says its unrelated. I feel like the doctor is not even trying to help my mom. Only thing dr has told us is that my mom is stable . Does anyone know of a good oncologist or a dr who can help us?

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@lunaluna10

Hi,
My mom was diagnosed with metastatic colon cancer in december 2021. Her oncologist told us the cancer had spread to her abdominal lining , 2 lymph nodes and has about 5 to 6 lesions on her liver. The doctor decided to start her treatment with oxaliplatin and capecitabine a regimen of 14 days with 7 days off. After 8 rounds of oxaliplatin they had to stop due to really bad side effects of neuropathy, now she is on avastin and chemo pills. Recently we spoke to the doctor about my mom not being able to eat due to the change of taste in her mouth and the doctor decided to lower the dose of capecitabine. My mom has told the doctor about having pain in her lower back but dr says its unrelated. I feel like the doctor is not even trying to help my mom. Only thing dr has told us is that my mom is stable . Does anyone know of a good oncologist or a dr who can help us?

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Hi,

Avastin worked well for me. As far as the tase in the mouth (metal icky taste I'm assuming), try sugar free throat lozenges with menthol - that works for me. I'm super physically active and 50, so do not know your moms activity tolerance. But, staying in motion helps with side effects, back pain, depression, and energy. Walks work wonders! I wish your family the best!

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@bea1972

Hi,

Avastin worked well for me. As far as the tase in the mouth (metal icky taste I'm assuming), try sugar free throat lozenges with menthol - that works for me. I'm super physically active and 50, so do not know your moms activity tolerance. But, staying in motion helps with side effects, back pain, depression, and energy. Walks work wonders! I wish your family the best!

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Thankyou. Will try that with my husb. He is due for six more cycles of folfiri with Avastin. Pet CT lit up above stoma reversal scar
Two small nodules and a laprascopic investigation showed a few tiny nodules in small intestine.
After stoma reversal he has a bowel movement whenever he eats something even if it is just an apple. Visits the toilet for BM several times a day.Does not pass dry gas. Lots of leakage . Any suggestions to help?

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My mom was diagnosed with stage 4 Colorectal cancer that has spread into her intestines. She underwent a loop ileostomy in order to do chemotherapy but after the ileostomy surgery, they noticed that the tumour in the large intestine enlarged even more and is obstructing. Their fear is that it will start to bleed throughout her body so they’re thinking of putting a capsule after round 1 or 2 of chemo. I’m very worried, anyone else ever experience anything like this?

Also anyone experience vomiting, nausea and just feeling ill after ileostomy?

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@lunaluna10

Hi,
My mom was diagnosed with metastatic colon cancer in december 2021. Her oncologist told us the cancer had spread to her abdominal lining , 2 lymph nodes and has about 5 to 6 lesions on her liver. The doctor decided to start her treatment with oxaliplatin and capecitabine a regimen of 14 days with 7 days off. After 8 rounds of oxaliplatin they had to stop due to really bad side effects of neuropathy, now she is on avastin and chemo pills. Recently we spoke to the doctor about my mom not being able to eat due to the change of taste in her mouth and the doctor decided to lower the dose of capecitabine. My mom has told the doctor about having pain in her lower back but dr says its unrelated. I feel like the doctor is not even trying to help my mom. Only thing dr has told us is that my mom is stable . Does anyone know of a good oncologist or a dr who can help us?

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@lunaluna10, I'm sorry to hear that the chemotherapy side effects are challenging for your mom and affecting her quality of life. My dad also had trouble with worsening neuropathy and changes in taste. He didn't have pain thankfully. My dad also chose to take a chemo holiday sometimes. In addition to @bea1972's helpful reply about Avastin, @margreet @wifemom3 @lisag03 @fiona007 may have additional tips or experiences to share.

If you would like to seek the second opinion of a Mayo Clinic expert, you can submit a request on behalf of your mom here: http://mayocl.in/1mtmR63

How is you mom doing today?

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@marquesdi

My mom was diagnosed with stage 4 Colorectal cancer that has spread into her intestines. She underwent a loop ileostomy in order to do chemotherapy but after the ileostomy surgery, they noticed that the tumour in the large intestine enlarged even more and is obstructing. Their fear is that it will start to bleed throughout her body so they’re thinking of putting a capsule after round 1 or 2 of chemo. I’m very worried, anyone else ever experience anything like this?

Also anyone experience vomiting, nausea and just feeling ill after ileostomy?

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Marquesdi, I moved your message about your mom and dealing with stage 4 colorectal cancer to this existing discussion:
- Hi, stage 4 colorectal cancer here https://connect.mayoclinic.org/discussion/hi-stage-4-here/

I did this so you can read previous posts and connect easily with fellow members like @margreet @wifemom3 @lisag03 @fiona007 @susan159 @lunaluna10 @bea1972 @colca and others.

I'm sorry to hear that your mom is feeling nausea and vomiting even after the ileostomy. Do they think that the tumor causing the obstruction may be the cause of these new side effects? What do you mean by "putting a capsule after chemo"?

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After 12 cycles of 5fu my husband had nodules along cut (seeding) where the tumour was removed. This was followed by 6 cycles of folfiri and 3 of avastin. Pet CT showed mild FDG uptake over stoma reversal cut. A subsequent laprascopic investigation shows roughly twelve nodules below .5 cms along pelvis and peritoneum
Will further cycles of folfiri and avastin help? Six more are scheduled. Is there any other treatment that someone can suggest. We do not live in USA and cannot travel to mayo

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@colca

After 12 cycles of 5fu my husband had nodules along cut (seeding) where the tumour was removed. This was followed by 6 cycles of folfiri and 3 of avastin. Pet CT showed mild FDG uptake over stoma reversal cut. A subsequent laprascopic investigation shows roughly twelve nodules below .5 cms along pelvis and peritoneum
Will further cycles of folfiri and avastin help? Six more are scheduled. Is there any other treatment that someone can suggest. We do not live in USA and cannot travel to mayo

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Hi @colca, I moved your message to this discussion about Stage 4 Colon Cancer where you were already connecting with fellow members like @bea1972 @lunaluna10 @susan159 and others who have experience with chemotherapy.

It sounds like the additional cycles of Folfiri and Avastin helped. And your husband is scheduled to receive 6 more rounds. Correct? Are you concerned about continuing with the additional rounds because the side effects are tough?

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I wish you the best1 There are options. Mayo can assist. One thing that I learned the hard way is that radiation creates many issues long after it has been administered. I know Avastin and others can be tough, but the effects do wear off (except I still have neuropathy in my hands and feet - but will go someplace warm this winter). I have intermittent incontinence after stoma reversal (but I've had it before stoma too), but it beats the stoma and I'm learning. It's a journey and you're not alone! Most important thing is to keep a positive attitude and get fresh air.

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