middlesister1

My mother was also very ill for a day after her second treatment and we regretted not staying in hospital that night, but we thought that was because they not only gave her a very high dose, butthey also had her on xeloda two weeks prior to maximize the radiation uptake. I’m sorry you had a rough time as well.

We are are keeping our fingers crossed that by March 19, not only will you be feeling great, but we’ll all be celebrating the great results. Please keep in touch and let us know how things are going.

Catherine

Hi Kevin,

I had to be pushy in getting Mom a second SIRT treatment. We were dealing with her oncologist, who was very cautious, and I had to bypass her to have the Interventional Radiologist take another look at her case.

Her oncologist was also at first against the genetic testing saying that what if results show that a drug not approved for CC would show as best treatment option and we couldn’t get access to it. However, she seemed to have come around and at our last meeting said (at least here in the US), there is no approved second line, so maybe she would be able to use the info results to decide what would be next. I believe she had not had many prior CC patients, and was just following the GEM/CIS protocol, but she did have my mother’s quality of life as top priority (chemo can be harsh).

It can’t hurt to ask. And, second opinions also can be good. Right now Mom has no evidence of disease and we are a few months after the timeline they had given her. I realize how lucky we are, but it also did take a bit of pushing beyond what I typically would do.

We are here for you,
Catherine

Hi Serena-

Quick thought on pricey Emend. VERY $$$. We filled it for the first cycle, but then when we mentioned the cost to Mom’s ONC, they were able to give her a larger dose through her IV so that she didn’t need the pills at home. Not sure why, but when given in the hospital there is no charge.

Mom did 3 cycles of GEM/CIS, the first was very rough, but that was before they figured out the right drugs for her( Emend and steroids (Dexmethasone) and also she was only weeks after an unsuccessful resection . For rounds 2 and 3, she was back to doing the cooking.

Couple of thoughts on chemo day-

1.Be ready for it it to be a long day. We often had to “wait for a chair” and then I think it was 3 hours for the actual infusion.
2.Chemo can be very cold going through the veins. We bought Mom a few zippered vest which kept her warmer but still allowed access to her arms (we should have done port immediately)
3. Hydration. When husband had chemo, they found that giving him a bag of IV fluids before the drugs kept the nausea away after. Also, when Mom did have the bad round, we brought her back in to ER and fluids made an immediate difference in how she felt . In hind sight, should have gone back in for fluids much sooner.
4. One of the drugs burned a bit while being administered- speak up- they can slow down the drip to fix it if needed.
5. We made a chart to check off when she had taken each med. When meds are all staggered 4,6, or 8 hours, it helped to lay out a few days at a time of when pills should be taken.

We’ll be thinking of you and hoping your Mom is one who tolerates the chemo very well.
Catherine

Ditto Marion’s sentiments. You are amazing Gavin. Thank you!

Hi Paula,
You mentioned that he has no ONC at his time, so very happy that you may be getting a second opinion and looking for another option ASAP. It’s very important to go to a hospital that has experience in CC. Even with a multi-disciplinary team, I still had to question if the whole team agreed on Mom’s treatment and if we should be more aggressive . If your Dad is still doing this well after being off of chemo for so long, I hope you find the perfect medical expertise necessary to keep him going strong.

Thinking of you and Dad-

Catherine

Dear Kevin,

As others have said, welcome to the site. I think for all, our goal is to live long with a good quality of life. Although CC may make that more challenging than we would like for our loved ones, with your support, I am sure your Mum will have the best possible balance. And, you are so correct in that others will learn from your postings. Over the past 16 months, the posts and support on this site have been invaluable to me.

Thank you for sharing,
Catherine

Dear Teresa,

I am so sorry that you lost your beloved mother. My thoughts and prayers are with you and your family.

Take care of yourself,
Catherine

Kathy- As Gavin said, we’re all thinking of you and hoping for the best. Please let us know how you make out. However, I also agree with Lainy that a second opinion may be beneficial.

Take care,
Catherine