Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
@eleanora In your pocket, fingers crossed on Thursday.
@mkestrel What a beautiful serene picture, I can only imagine how nice the hot springs were. Glad you're able to breathe a little sigh of relief. May your plan be successful, fingers crossed for PET
@mara51506 Well glad you were able to test using the walker and get home safely. With your determination I know you will find the best safe method to get around. I always loved Honey-Nut Cheerios, haven't had it in years.Seems like it would be a good combo but maybe more of a snack.
@shanagirl Ugh that darn cough!! I'm sorry to hear you have to postpone your trip, cancer stinks! I like your Ortho/Onc's positive thinking we all wish the same for you.
@chicagoan Wow so happy you're making great progress!
@irishlove Oh Irish I'm sure you are exhausted! Anyone would be tired after all you have been going through. Wishing for better days soon, sending hugs and healing.
Hi to all you lovely ladies here, wishing you all a good week . Hope all appt and treatments go smoothly this week
cookie54
Re: Are you currently (or have you been) in a Clinical Trial?
Hi Saulius!! I wondered the same, and saw a couple of papers on PubMed that were one-off reports of patients who got the vaccine and had a great response to one drug or another. It's certainly possible to get a "boost" (pun intended) from a vaccine, but do remember they are talking about actual vaccine doses, which are higher than booster shots, and in one report the big benefit came after the second dose, and basically a strong reaction to the vaccine seems to correlate with general immune system mobilization. So it works on its own to give a systemic boost of immune activity, and if the cancer is already somewhat responsive to immune infiltration, etc, it boosts the effect of the treatment. But the real synergy is happening when immunotherapy is added- in part its because the immune system is increasing PDL1, thereby making the cancer more sensitive to Keytruda or other checkpoint inhibitors that work by blocking PDL1..
I really like the video in the link below, from the group at U-FLA who made this finding, they basically are working on cancer-specific vaccines and noticed that what was supposed to just be the control in their experiments (ie, an mRNA vaccine, Covid or just mRNA, not designed to target the cancer in any way) worked just as well as their anti-cancer vaccine, so it was just mRNA can boost the immune system…
There are other things this year that have popped up where drugs designed for other purposes can also stimulate immunotherapy, esp PCSK9 inhibitors (used for cholesterol) and SSRIs (anti-depressants) and so you wonder what would happen if you first got the full Covid vaccine, added immunotherapy, then the next month added PCSK9 inhibitor then another month later the SSRI, would they all work together? If you were strategic to only add one thing at a time and then check TMs to see if that one thing helped or not, that would be one way to check… Anyway, that's what I wonder, is it a case of the more the merrier? or could one of those things get in the way of how the others are acting? but, anyway, wow that all these things are available from your doctor right now, and we learned about all of them just recently…
Here is the video the lab put out:
Re: Can we have a forum for "older" people with bc?
Autumn Glow - it was very nice! Super cold as it’s next to the Mohawk River. We enjoyed strolling and seeing it all.
My grandniece in the middle of it, but hard to see.
There was a giant bounce platform, big circle swings that were light up, as well as 2 seesaws. But alas, we’re too old for any of that. A magician show, a few booths selling items, cotton candy shaped like picachu (spelling?) and other type animals. Food was limited to chicken and dumplings. They could have had so much more grab and go foods but didn’t.
It’s one of those things that is very nice to see, but I don’t think I’d need to go back - unless grandkids were in town.
Gf dh was released from the hospital tonight. Fingers crossed he stays home!
My cousin stopped by tonight and I had a new bathroom faucet installed. You don’t know how bad your old one was until the feel of the smooth ease of turning on the new faucet. Haha. We leave in 9 days. I’ll forget all about it until we’re back in May and it will be new again.
SO was seen by the PA at the gastroenterologist office today. They got him in for the colonoscopy on Wednesday at 7 AM. But you have to be there at 6 AM. She said no one wants that appointment. He has to drink prep at 5 pm, 1 am, 4 am! Now we know why no one wants it. For him to get in before we leave, he had to accept it.
That’s it. It’s 39 right now, going down to 32 overnight. Meaning the hill towns around us will definitely be below freezing.
Betrayal, our vacation spot for 10+ years was Puerto Rico. We’ve stayed all over the island. If you like coffee, PR has some great ones. Alto Vera is one I remember- you can grab it in any grocery store. Also, we’d grab souvenirs- tee shirts, etc, at Walgreens. And don’t forget the RUM! Don Q has a tasting right down by where the cruise ships come in. There is a brand rated as one of the top sipping rums in the world, the name escapes me but if you ask at a liquor store they’d know it. We’re hoping to be spending a week there in December for our 30th anniversary of the day we met. Love it there.
Stay warm & be well.
cindyny
Re: Can we have a forum for "older" people with bc?
Sunny today as we travel towards Puerto Rico..It seems they moved up the Caribbean brunch to today. We so enjoyed the last one, we went again. The desert was hummingbird cake which us absolutely delicious. I can't remember having had it before this cruise and fully intend to make it at home.
I always made banana nut bread to take to our level meetings when I worked. I would freeze brown bananas so I always had a ready supply. I would also make multiple loaves at a time and freeze them. The recipe I have is from a former coworker who died very young from BC. I always thought of her when I made them. I haven't baked much since I retired, but intend to get back to it. Funny that I was so busy then, but still found time to bake, but now I am less busy and I seem to have no time.
We arrive in Puerto Rico this evening and won't depart until tomorrow evening. We received an invitation to a wine tasting this afternoon. Last evening we were invited to a private captain and officers cocktail party forbthose having 3 star or above status. It was nice.
Hope everyone has a great day and waving "hi" to everyone.
betrayal
Re: Can we have a forum for "older" people with bc?
betrayal - glad the cruiseline made the decision to skip Turks & Caicos. Otherwise, the forecasted trajectory for Hurricane Melissa would mean you would be sailing through the hurricane. I get that some folks are disappointed but they would be far more upset if they sailed through the storm. Our December cruise ends in San Juan so we are spending a night in SJ as we’ve never been there. Plan to walk through the old town and visit the fortresses.
Cindy - the Halloween pictures are great. A few years back we went to a Halloween display at the Botanical Gardens which was very disappointing. It was simply orange balloons with drawings.
Wishing all a good week.
harley07
Re: Can we have a forum for "older" people with bc?
We are in Ft. Lauderdale to pick up passengers for next part of Cruise. While we were at breakfast, it poured rain to the point we could not see out of the windows. About 20 minutes later, it was full sun. Glad to see it..
We had to disembark to "go through customs " and had to report to theater to do so. We waited and waited while they tried to track diwn those who decided they didn't want to disembark as ordered. Then they finally herd us off, walk through facial screening for the second time and then proceed to make us stand in line for 40 minutes while they locate the missing 4. When they finally showed, they had to walk past 4 lines of booing passengers. True walk of shame, but no seeming remorse on their part for holding up so many of us. Told to bring passports as well as ship key card. No one looked at them and we did not go through customs!
There are other ships in port from Celebrity, Princess and Royal Caribbean as well as the Rotterdam. I could not travel on those ships; just too many people on them.
We,were facial screened for the third time when we returned to the ship. We headed to the Lido for burgers from the Dive-in. This is the first I've had this cruise. They are good and the fries are delicious. I seldom eat fries so I do enjoy these.
We set sail for Turks and Caicos at 3:30. Looking forward to another week on the ship.
Hope everyone has a great day. Waving "hi" to everyone.
betrayal
Re: Stage IV NED crew : lets support each other
Hello Everyone! My Sandra had her last scans two weeks ago and she's still NED! 8.5 years with treatments and doing very well. Just went to Italy for a holiday with her girl-friends:) Hugs, Saulius
bsandra
Re: How are people with liver mets doing?
@seeq - Hi, and thanks for your comments. They are always interesting and helpful. Yes, I did have a biopsy at the end of July and that's where the mutation was discovered. It took a month though for some of the results to show up and now I'm not sure if the mutation result came in early or late, but whatever (I could check MyChart, but too lazy.) Anyway, as you say it looks like I have a lot of options right now, but it's so overwhelming trying to sort them all out and make a decision. One and done would be wonderful, but from what I've read, that doesn't seem to be the way it usually goes. My understanding is that any of these options maybe kick things back for awhile, but that invariably the same tumors (and more) begin to grow again, so all you really get for a lot of pain and more is maybe some time. I think I read that the one year survival statistic for those who get Y-90 is only something like 46%. My onc told me that that's actually a good statistic! I think it might be because so many with liver mets have lots of mets elsewhere too. I also have mets to some of my bones only but it's relatively stable, so maybe that's a plus, since it isn't all over? I understand that histotripsy survival statistics are similar to those of the other treatments. So far, I'm just not seeing where all of this is particularly great. The histotripsy NP told me that the best they could do for me, after looking at my scans would be to "debulk", but not cure. I'll have to wait and see what their surgeon says. Have your liver mets remained under control with just the drugs? That's wonderful if that's the case and I hope that keeps going for you for a long, long time.
Re: My Husband, My Life, My Love, My Family, My Cancer
In case anyone was interested, the cereal and peanut butter were good but not filling over a long time. Heating up a meat pie to have next. It has chicken and carrots with peas in there so good enough. Will definitely add some caesar dressing, possible other type of topping and I am sure it will be quite good.
