Treatment for life - immunotherapy and long-term side effects

kricke

Hi, everyone. Quick background - diagnosed Dec 2015. Chemo (mytomycin and capecitabine) and 27 radiation treatments Jan 2016. Cancer returned, pierced the rectal wall and attached to my spine. Abdominal perineal resection with permanent colostomy Jan 2017. Biopsy still showed residual cancerous cells. I’ve been on Opdivo since August 2017. Scans continue to be stable with some minor shrinkage. Hard to differentiate completely between scar tissue and tumor. Had a nerve block in order to stop taking Lyrica for nerve pain. For the longest time, my only side effect was tiredness but in the past 6 months have been experiencing muscle and joint pain, mostly in my arms, hips and knees. So, I am currently taking a break from treatment and on prednisone for the inflammation. Feel better than I have in years and getting lots done! LOL.

Are there any other treatment-for-lifers out there and/or anyone else getting immunotherap?  I would love to create a support system for those of us that will never get to ring the bell! #cancersucksbutlifeisgood

swood9008

Im interested to hear more

Im interested to hear more information on your treatment of your open to it? My mom is on her 3 recurrence well second recurrence 3 included original. First time received protocol, second apr colostomy, currently chemo for recurrence to vaginal wall. My email is <Content removed by CSN Support Team> would love to hear from you! 

eihtak

kricke...

Hi,

I think support at allstages of this journey is oh so important! I was initially dx with stage 3b anal cancer in 2011 and a colostomy (that has become permanent) was part of my treatment along with protocal chemo/rad. A year later I was dx with unrelated breast cancer (double mastectomy) and since have had 2 recurrances of the anal cancer to my lung area. One treated with surgery/chemo and just last year the second with radiation. During all this Opdivo was discussed as a potential Rx if needed at some point so I surely welcome your input on that.

I will be scanned later this week as part of my follow-up but though always optimistic, the reality is that I will likely need further intervention at some point.

For now, other than a cough (that I've had since the radiation and was told due to scaring from radiation to my airway) I feel fabulous! I am active and loving life...but because of living under the umbrella of stage 4, don't plan on any bell-ringing either!

Stay in touch and I will hope your #...life is good continues for many many years!

katheryn

Ohmy

Thank for sharing your posts.

Thank for sharing your posts.  Sometimes I feel all alone dealing with my reoccurring treatments.  I had APR surgery with a permanent colostomy in December 2018 due to a recurrence.  A left lung resection in March 2019 showed a small tumor was HPV related metasis.  My lymph nodes were  negative.   My May PET scan in May showed a new small tumor in my left lung.  It was treated with 5 doses of radiation.  The August PET scan showed that tumor was gone but I have two new tumors nearby.  Next week I am starting 38 weeks of radiation with low dose chemo once a week.  My oncologists expect minimal side effects and I plan to continue working.  I feel perfectly fine now and I have no pain anywhere or symptoms of lung cancer.  My chemo oncologist said the chemo is just to make the radiation stronger.  My radiology oncologist said it is behaving more like a primary lung cancer than an anal cancer metasis.  I was treated with Chemo and radiation for Stage 3 anal cancer with lymph node involvement in February and March 2017.  So much has happened in two years.  I worry about my husband.  He takes such good care of me. We do enjoy every day we are together and I truly feel blessed.  I continue to pray for all of us.  My oncologist told me the insurance will cover immunotherapy if other treatments don't work.

eihtak

Ohmy said:

Thank for sharing your posts.

Thank for sharing your posts.  Sometimes I feel all alone dealing with my reoccurring treatments.  I had APR surgery with a permanent colostomy in December 2018 due to a recurrence.  A left lung resection in March 2019 showed a small tumor was HPV related metasis.  My lymph nodes were  negative.   My May PET scan in May showed a new small tumor in my left lung.  It was treated with 5 doses of radiation.  The August PET scan showed that tumor was gone but I have two new tumors nearby.  Next week I am starting 38 weeks of radiation with low dose chemo once a week.  My oncologists expect minimal side effects and I plan to continue working.  I feel perfectly fine now and I have no pain anywhere or symptoms of lung cancer.  My chemo oncologist said the chemo is just to make the radiation stronger.  My radiology oncologist said it is behaving more like a primary lung cancer than an anal cancer metasis.  I was treated with Chemo and radiation for Stage 3 anal cancer with lymph node involvement in February and March 2017.  So much has happened in two years.  I worry about my husband.  He takes such good care of me. We do enjoy every day we are together and I truly feel blessed.  I continue to pray for all of us.  My oncologist told me the insurance will cover immunotherapy if other treatments don't work.

Ohmy...

Hi,

I am so sorry to hear of your newest treatment plan, yet it is encouraging to hear that your doctors are expecting minimal side effects. Know that you are never alone in this (though I can sometimes relate to that feeling)...Cancer of any kind is so complicated and whether primary or recurrance our bodies all react just a bit differently leaving us with that sense of being the only one.

It sounds like you have a good team of doctors who are watching you closely and catching things early on as well as having further plans if needed. Those are things I look for in a doctor myself!

Along with me riding this rollercoaster my husband rides one too for a blood cancer (Multiple Myeloma) After two transplants (10 years ago), surgery and radiation for a couple recurrances over the years, off and on chemo stints, and a heart attack, he is holding steady and doing great on a low dose chemo regimen for almost two years now, going in for IV chemo once a week. Other than a bit more tired (but that may not even be related as he always was a napper) his side effects are so so minor. I will pray the same for you and that you continue to feel well, work, feel grateful and blessed with the ones you love for a long long time!

katheryn

mp327

Ohmy said:

Thank for sharing your posts.

Thank for sharing your posts.  Sometimes I feel all alone dealing with my reoccurring treatments.  I had APR surgery with a permanent colostomy in December 2018 due to a recurrence.  A left lung resection in March 2019 showed a small tumor was HPV related metasis.  My lymph nodes were  negative.   My May PET scan in May showed a new small tumor in my left lung.  It was treated with 5 doses of radiation.  The August PET scan showed that tumor was gone but I have two new tumors nearby.  Next week I am starting 38 weeks of radiation with low dose chemo once a week.  My oncologists expect minimal side effects and I plan to continue working.  I feel perfectly fine now and I have no pain anywhere or symptoms of lung cancer.  My chemo oncologist said the chemo is just to make the radiation stronger.  My radiology oncologist said it is behaving more like a primary lung cancer than an anal cancer metasis.  I was treated with Chemo and radiation for Stage 3 anal cancer with lymph node involvement in February and March 2017.  So much has happened in two years.  I worry about my husband.  He takes such good care of me. We do enjoy every day we are together and I truly feel blessed.  I continue to pray for all of us.  My oncologist told me the insurance will cover immunotherapy if other treatments don't work.

Ohmy

I am so sorry to hear of your most recent PET scan results.  I hope that your planned treatment will be successful and that you tolerate it well.  May this be the final punch to knock out this beast for good!  Please keep us posted.