PET CT results

Dak82

One thing I admire about Huntsman is they get scan results read and posted quickly! Had my PET CT Friday morning and Saturday the radiation oncologist was calling me as results were posted on My Chart. Once again it was a bit of a mixed bag. Larger tumors continued to grow but by mm, not cm. The subcarinal node is still growing as well, almost 3 cmx3cm now. But fluid is once again reduced and radiologist reported no other nodes were enlarged after past two scans showed lymphadenopathy of mediastinal and hilar nodes. No report on nodule that was in upper abdomen in last two scans. So again, I take the overall results as a positive. The RO did confirm he'd like to go after the pleura-based tumor in the upper left lung with SBRT--stereotactic body radiation therapy. I'd have to look it up again to describe it! His resident will start planning this week and it will likely consist of 5 "fractions" or sessions. Not sure if they do them 5 days in a row or spread them out like the brachytherapy. I spent a few hours yesterday figuring out radiologist speak and learning the anatomy of the lungs trying to figure out where these things are growing. As I've said before "knowledge is power" and I want to know everything I can about these intruders in my lungs. Oh and abdomen and pelvic area were clear.

Overall I feel pretty good. I started cycling and walking/jogging with more jogging than walking finally! The ureteral stent is major holdup there and the renal scan is scheduled for the 11th. My 2d 6-week cycle of dostarlimab is 9 Nov, although the RO wondered if my medical oncologist will want to change treatments based on these results. I'll admit I wish the tumors would quit growing but I think the dostarlimab is working very slowly. I'm thankful to have had this option. No real side effects other than cold sores and other mouth sores that are very slow to heal. But otherwise doing fine. My husband and I travelled to PA for a wedding earlier in the month and FL last weekend so I could go to my first-ever Miami Dolphins game--which they lost of course.

Hope everyone is heading into the Holiday season mostly healthy and happy! Hugs and love to all,

Deb1

NoTimeForCancer

Deb, thank you for the update

Deb, thank you for the update.  To me, you are truly an inspiration.  Thank you

Hugs dear one

ConnieSW

Deb,

I echo No Time's sentiments. 

Dak82

Inspiration

I am inspired by the stories and experiences of the women and families who have posted here. Many thanks to all of you for sharing some of your happy and not so happy experiences.

Deb1

Harmanygroves

It sounds like good news...

I have to agree: it sounds like the overall results are positive. It is impressive that you are so well educated about what's going on, and can communicate details to us without much trouble. You're one smart cookie, Deb 1.

Rather motivating to hear you are jogging. I have hit a slump in some of my activity, I think in large part bc it's so rainy here It's all kind of bleak!

If you can do it, I need to do it too.

Well done on all fronts, Deb 1!

 

 

TeddyandBears_Mom

Deb, So glad you were able to

Deb, So glad you were able to travel and have some fun. Sounds like this is good news and I hope you continue to tolerate your treatments well. Those darn mouth sores are painful!

Thank you for taking the time to give us the update. You just never know who you will help down the road.

Love and Hugs,

Cindi

els19

Mouth sores

Have you tried oil pulling with coconut oil for your mouth sores? It was recommended by one of my nurses and I've found it really works. I use a tablespoon of a good brand of solid coconut oil and swish with it for 15 minutes. It liquifies fast. Just don't spit it out down a drain as it could clog your pipes. It cleared up my mouth sores fast. I skipped it for two days and they were back. So now it's my daily procedure. I'm currently on Keytruda/Lemvima. I love your attitude. I find I have to focus on the positives. Everyday is a blessing. Good luck!

Dak82

Thank you!

I will give that a try! I have suffered from herpes simplex my entire life but the past few months I've gotten more sores on my lips and especially canker sores behind my teeth. Any trauma to my mouth sets off a growth and I'm sure the immunotherapy has contributed to the increase. I gave Lysine pills the ol college try and they did nothing for me. So I will give this a go. My mouth has also become very dry impart due to the tolteridine I take to prevent bladder spasms. The dryness is really bad at night while sleeping. Have you experienced this at all? I am sucking on biotene lozenges during the day but can't do that at night!

I hope you are hanging in there. The Pembro/lenvima combo wasn't right for me although I did start on Pembro before dostarlimab was available.

Cheers,

Deb

els19

Drymouth

I've been drinking aloe Vera juice. It helps settle my stomach and it's very moisturizing for my mouth. Just like with chemo, I find that everything gets dry. So, I've been doing a lot of self care with daily thick lotions for skin, eye drops and a very emollient foot cream. I've been amazed how well the oil pulling has helped with the mouth sores and somedays I do it twice. I had my second infusion on Thursday and my CA125, which has always been very accurate for me, had went down 88 points. I'm keeping my fingers crossed that it will continue working for me. Have you checked out the website onclive.com? If you look under specialty for entrometrial cancer you will find all the latest news. Dostarlamib is mentioned several times. It sounds like it's working really well for many and is a good fit for you.

Good luck!

Sue