Advice and Help

CanadaNorth

My mom (75 Years old) went for a colonoscopy in March, 2023. During her colonoscopy, the surgeon indicated that he had a hard time with the colonoscopy because of a blockage. He deemed it suspicious and informed my mom that his first thought was Anal Cancer. He indicated that it was treatable and curable. My mom prior to her diagnosis was an avid 3-4 mile/day Walker and healthy eater.

My mom subsequently went for a CT Scan and went to the Cancer Center to begin radiation for her Anal Cancer in April, 2023. The Radiologist/Onocologist was surprised when he saw the CT scan as it appeared that the Anal Cancer had metastasized and spread to her lymph nodes and liver with 2-3 spots in each location. My mom then went for an MRI and where it was verified as well. This new development meant that mom would start Chemotherapy treatment right away. My mom has experienced Chemotherapy before as she battled Cervical cancer in 1975 and Breast Cancer in 2003 where it was discovered that she had the BRKA Gene.

Mom began her Carboplatin-paclitaxel regiment in May, 2023, with 3 weeks on Chemotherapy and then 1 week break with the Cycle to begin again for another 3 weeks with 1 week off. This continued but my mom was having severe fecal incontinencd and we brought this up with her local doctors but they assured us it was because of her cancer. 

At the end of June, 2023, we brought mom to the ER as she was severely disdained around her abdomen. The doctor in the ER determined that there was a large blockage in her rectum and colon that was putting pressure on her Bladder. We also notified him of the fecal incontinence and discomfort mom was having from her anus as we were told the pain was the tumour in her anus. After further examination from the ER doctor noticed that it was a large abscess near my mom’s anus and that it needed to be drained. It was subsequently drained and after many attempts to empty her bowels the Surgeon notified us that a fistula had formed because of the fecal blockage in her rectum and colon.

In order to allow the fistula to heal a Double Barrel Colostomy was performed. The surgeon told us that he tried to remove as much of the fecal mass and fecal impaction that had been in there for what he determined to be many months. He said that it was hard as a rock and the size of a grapefruit. She also developed a fistula near her stoma.

Mom was in hospital for over a month, but was able to continue her Chemotherapy treatment 1 week after surgery. Before being discharged after 1 month in the hospital, the doctors had completed several CT Scans which showed that the lesions on the liver and lymph nodes were gone and that the tumour had shrunk considerably.

The hospital stay greatly affected my mom as she had to learn how to walk again and regain her mobility (she is still struggling but walking a lot better now). After her MRI in August, 2023 her onocologist indicated that the Cancer Lesions on the liver and lymph nodes were gone and that the tumour was gone and that there was no evidence of any cancer. We were elated! He wanted to continue another 6 Chemotherapy treatments just to make sure that it removed any further cancer cells.

After her last treatment in October, 2023 (18 treatments total) and subsequent CT & MRI scan, the same information was shared…no cancer visible anywhere! Again we were in such disbelief and elated. In November, 2023 mom had some internal bleeding which was a tear in her colostomy. That healed through some blood transfusions and bringing up her Blood Levels. She had 4 blood transfusions over the course of her Chemotherapy treatment. The doctor did notice that she had a minor lung infection therefore was prescribed antibiotics and sent home. 

Mom then had 2 Iron Transfusions to help with increasing her blood levels and then had a CT Scan in December to see if the minor lung infection had cleared up, which it did, however they noticed 2-3 lesions on the liver. Our onocologist sent mom for an MRI at the beginning of January, 2024. We received the results of the MRI indicating that there were 5-6 new lesions with the largest being 12 mm and smaller. 

Our onocologist indicated that he wanted to start mom on Immunotherapy (Opdivo - Nivolumab) but we needed to sign some information. 2 days after we received a call indicating that this immunotherapy was not covered by our Province in Canada or their medical plan for my moms type of cancer and that we would have to find alternate payment options. 

However things have changed. We were told by our onocologist that (Opdivo - Nivolumab) was not permitted for treating my moms cancer and that he was now applying for Keytruda (pembrolizumab) to be the immunotherapy for mom ONLY if her biopsy tests positive for the dMMR gene. If she doesn’t have the gene then the only other option would be to:

• begin Chemotherapy again with either a new regimen or continue with her old regimen (we are not sue if our mom can handle this)
• stop treatment all together 

So we need some advice.

Are there any immunotherapy treatments that would work for my mom?

I have heard about low dose chemotherapy…is this possible?

We need some help.

pem

So sorry to hear all your mom is going through. I’m also sorry to say I have no good advice other then your mom is lucky to have you by her side. Hope you find the answers you are looking for. :)