How long have you been Stage IV?

Hi @livinglifenow , @tougholdcrow , @EddieJ , @emiliamarty , @lafish . Hope everyone is having a great day. @livinglifenow Pam, thinking about you today as I know you had a lot of appointments scheduled for today.❤️

@ssales13 @EddieJ @livinglifenow @tougholdcrow @emiliamarty

Hi everyone, I’ve never actually been on a cruise and I don’t travel much anymore. I’m more into heading to the cottage these days. It’s on a lovely lake that’s nice and quiet, very relaxing. Going to try to make it there this weekend as long as the weather is good. Fingers crossed.

Hugs,

Lafish

@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish Wow! A lot of chatter today! I just returned from my multitude of appointments. Everything went very smoothly. My ECHO was great, labs all looked good, and HP infusions went well. No problem with my port like I had last time when I needed tPA. Last appointment was radiation simulation. Quick and easy. Should be starting treatments soon. Feeling quite good, all things considered.

Thanks to everyone for your prayers and well wishes for today. What a great group of supportive gals!

@EddieJ Juliana, regarding your concern about going on a cruise… I can share a story with you: My sister-in-law and her husband went on a cruise over Christmas this past December. Both came back sick. They had another trip planned (a 2 week trip to South America) in February. They decided to boost their immune systems by doing infusions at an integrative medicine center. They each had one infusion 10 days prior to their trip and another one 2 days prior to their trip. Although other people in their travel group did get sick on the trip, they felt great the entire time and never did catch anything. I don't know what all was in the immune boosting infusion, but I do know that Liposomal Glutathione was one thing that was added. My husband and I actually take it in softgel form every day. A nurse suggested it to us because it is good for your liver and enhances your NKCs (Natural Killer Cells). The brand we use is by CORE Med Science and I believe my DH gets it on Amazon. It is a bit pricey to go to an integrative medicine doctor/infusion center (insurance doesn't cover most of these types of treatments), but it might be worth a try. Even if you don't go on the cruise, something like this might keep you from getting sick so often. Anyway, this is just a suggestion. We all have to do what works best for us and our care team. Wishing you healthier days in the future and a great cruise to Alaska if you choose to go! 🤗

@ssales13 Stacy, hope your aches are improving. That can certainly take a toll on a person.

So grateful for all of you and the opportunity to share our troubles and improvements and support for each other.

Hugs, Pam 💗

@ssales13 Stacy, glad you are having an ache-free week. Yes, with so many different medications, it's difficult to know which one is causing the side effects. And, sometimes it is the combination of two of them that is the culprit.

My side effects (itchy rash and charlie horses) have diminished greatly. I don't know why. Just very thankful that I no longer look like a monkey scratching all over my body! 🙉

Enjoy this week!

Hugs, Pam 💗

@livinglifenow Pam, so glad your itchy rash and charlie horses have diminished! I lol’d about the monkey reference! I feel like that too with the itching. ❤️

@EddieJ , @tougholdcrow , @ssales13 , @emiliamarty

Hey Everyone,

@tougholdcrow what a wonderful update! You have such a fantastic team that knows how to get things done.

I’m feeling that way as well this week, my MO appointment went very well, scans being booked for April. I was referred to the Pain Management Clinic and got into see them yesterday. They worked their magic and with a few changes to my pain med dosage I actually had my first full night sleep in months.
Feeling very grateful for my team today 😁

Hugs,

Lafish

@EddieJ Juliana, so sorry to hear your pneumonia is hanging on. I know a few people who had it this winter and it took them a while to kick it, too. Take care of yourself and take it easy. Hopefully spring is in the air and you will have a spring in your step soon! 🌺🌸💐🌷🌻

Hugs, Pam 💗

@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish I finished my first radiation treatment today. I was quite nervous, but all went very well. I had SABR (Stereotactic ABlative Radiotherapy). It's the one where you hold your breath while watching a small screen and keeping the white line in a green box. The white line is your held breath. It was all quite fascinating. After we finished the Dr told me I did a great job. I did hold my breath quite a long time at one point! He was probably impressed and relieved that I could go that long without asking a question!😄 Anyway, four more to go!

Wishing you all positive treatment outcomes!

Hugs, Pam 💗

Ladies, you all sound very positive, which has to be good. And it’s making me think hard about actually planning some trips despite the mobility issues, because time is running out, whichever way we look at it. Apologies for long silence here. The shingles came back. The post-radiotherapy pain flare to the pelvis was off the scale, and I had what must be the shortest ever time on fourth line treatment (Truqap), with exactly four days before having to go to urgent care with diarrhoea that laughed in the face of loperamide, and then some. It is currently on hold. I’ve had only part of the results of the whole body MRI, more activity in my skull, some of it quite concerning. Lord knows what’s happening from the neck down but I hope to find out soon. Have any of you been watching Dying for Sex (on Disney in the UK)? I binge-watched it. Some of it resonated hard, though exploring kink is not on my personal bucket list and I am unlikely to fracture my femur in the same way that the heroine does in the series…

I swapped out morphine patches for fentanyl. Does it show, haha?

@emiliamarty,

I have also just finished pelvic/sacrum radiation and feel shocked by how debilitating it has been. Crushing fatigue and leg/muscle weakness as well as very odd pelvic sensations (like I’m about to give birth to my uterus 🥺).I haven’t really been able to get totally comfortable for over two weeks!
I hope for no more flares or any discomfort for you and thank you for making me feel less alone in my rads reaction 😊.

@exbrnxgrl I am always happy to make anyone feel less alone with their pain! I do sometimes wonder if the reason I have run through so many treatment lines is not that the cancer is exceptionally resistant but that I am an exceptional wimp. They weren’t joking when they listed the potential side effects, which I shrugged off at the time. @livinglifenow on the same subject, I’ve never experienced pain flare in other radiation treatments - shoulder, neck, L4 (I think) - so I hope that your sternum rads go easy on you. @tougholdcrow I, too, feel that my sexuality has been fully explored, nothing more to see here, folks, move on. But I think you’re right that it’s about throwing oneself into whatever experiences appeal. It’s also about friendship, which I found terribly moving.

@emiliamarty

Thank you for the chuckles this morning. Humor is a wonderful weapon in the face of difficult circumstances. Hope your next treatment is a winner.

@exbrnxgrl

Sorry the radiation has been such a terrible experience. Fair warning to the rest of us about the sensitivity of that area. I've had radiation to the right pelvis, fortunately with no discernable side effects, and to the clivus bone in the skull, which had about an 8 week recovery period- partly from the brain swelling and partly from the side effect of the steroids prescribed to reduce the brain swelling. No long term effects except for possibly contributing to cataract growth in one eye. Having that removed in 10 days and hoping for good results.

Healing thoughts and virtual hugs to each of you!

Hey, Juliana, @EddieJ So glad you are finally recovering from your flu. That really takes one down! I remember when I hit my 50s and a bruise took 2-4 weeks to heal. The was a warning right there! 😊 Take it easy with the party. Put up a throne and sit (or sleep) there all day. Can't wait to hear your rescue dog story….🐕️

I am attempting to golf today, although my allergies are so bad I'm having incredible shortness-of-breath, which started prior to radiation, so I can't blame that. It's improved some after doing a sinus rinse and taking Flonase. It's a full time job just trying to not feel bad; forget about feeling good!

Best wishes to everyone.

Hugs, Pam 💗

@livinglifenow Pam, you are right! I will play queen for the day and stay on my throne. I hope DS and DD help their Dad without the Queen having to make royal commands 😂😂 Enjoy your golf! Slow and steady my friend!

@eleanora I second everything Pam just wrote! You are in my hopes and prayers for better outcomes!

Good weekend all!! juliana

@eleanora-"I'm Still Here" is one of my theme songs too. I love it!