Are you currently (or have you been) in a Clinical Trial?
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Hhmm, I guess its really rare in MBC, well, at least you did not waste time on the trial- while they continue to hunt for a marker so we can all get CAR-T, what are they suggesting for other trials? Will be interested to hear what is next!!
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Sorry to hear Jennifer! Onward and upward!! We are here for you if you need to vent xxx
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I'm sorry to hear that Jennifer, and I so admire you already looking ahead to the next trial.
When you're ready, please share the other trials you're considering I really value your insights.
Cure-ious, are there molecules on the surface of cancer cells they haven’t classified and categorizedyet?
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Jennifer, the news about the lack of mesothelin expression is a major bummer. I was hoping you would be the next Judy Perkins
And I hope you ended up buying a fabulous lipstick.0 -
Jennifer, I'm so sorry. What a massive letdown.
I sincerely hope that your dog is improving and comfortable.
Katty
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Jennifer - such disappointing news to get, especially after waiting so long to find out. UGH. There is a CAR-T trial at Fred Hutch as well, but I believe it's only open to TNBC (but you may want to look into it and double check). I believe you need to express ROR-1 (not sure how common or uncommon that is). But I think that trial would be relatively similar to the one at MSK.
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Hi All!
I've posted this on another thread, but Husband 11 rightly made me aware, that I should share on this thread so people can find the information.
So yesterday I started the Pfizer phase 1a of the “ improved} ibrance. The medication is PF-0873600 I'm taking 100mg the maximum dose to be used as a mono therapy.
Yesterday, my first day. I was at the hospital under close observation up to 12 hours.
At 10.15 Easter time I took 50mg of the Pfizer medication after sharing my tiramisu recipe and the best places to visit in Italy with my two young and caring Italian nurses...
At 12.15 I felt a cold coming on: dripping nose, sneezing, head in the clouds, and chills....even though I was under two warm blankets.
At 1.15 I ate some vegetables, I decided to go get a decaf coffee to warm up, and that's when without any warning, I rushed into the nearest bathroom where I threw everything up....three nurses rushed to my rescue....they reassured me that nausea and throwing up was to be expected. I told them losing a few pounds wouldn't hurt me...we all laughed...
At 1.45 still feeling queasy, I dissolved my first sublingual Zofran....immediately the nausea stopped, I walked around and I noticed my energy was still good and my head had cleared up.
Now I'm finishing up that dec coffee with a bunch of graham crackers....the chills and nose dripping have subsided.
More upcoming blood tests till 8.30 pm
At 10.15 pm, I will take two more pills, but this time I'll take the zofran one hour later, just to be on the safe side....
The lesson if this drug gets approved?
Take the zofran before eating regardless of the symptoms.....nurse said eventually the nausea goes away....
At 10.15 pm I go to bed and takethe two remaining pills. Now I have to wait one hour before I can eat something
I'm starved....but I'm terribly afraid I will throw everything up again...and taking another zofran will mean more problems tomorrow morning...have not used the bathroom at all today...and I used to be very regular...
I'm also noticing overall dull aches...like those from overworking the machines at the gym....but in weird places like my ankles and lower legs...my knees....and hands...
Another few minutes..and I will have a bowl of blueberries....can't wait! I've never looked so adoringly at blueberries before...
Muscles aches and pains are now increasing and spreading all over the major muscles groups.....will not be able to sleep if I continue feeling like this....
11.30 now flu like symptoms are taking over—like this morning —stuffed nose, sneezing, head in the clouds, basically I'm feeling miserable...and achy all over....but I manage to not throw up and sleep a little.
4.00 am....I wake up to eat something and take my supplements.
All my bones and muscles, from my cranium down to my feet, feel still as if they were racked on some medieval torture machine...the pain and discomfort is immense and unbearable. I'm feeling intense pain and weakness especially in my femurs, feet and hands, that I fear, will undermine my ability to take care of myself.
In less than 24 hours, this drug has destroyed my strength, well-being, and wholesomeness I had achieved with acupuncture sessions
I'm supposed to go through this ordeal again in 6 hours and I have not recovered from the previous session 6 hours earlier...
Assuming that this drug brings forth the second coming of Christ, no one is gonna wanna hang around to see that happen. It just doesn't make you want to live feeling like this.
I'm going to continue the protocol today, to ensure that the SE experienced are consistent, and then I will request a dose reduction. This type of torture is not for the living....
I wish I had better news to report...
Also, no sign of needing a bowel movement yet....
5.00the overall widespread level of bone pains is my primary concern right now. I'm not sure I will be taking the two pills again this morning. I'm in hell as it is already. I keep on tossing and turning trying to find relief but all the problems are on the inside. Blocking the formation of the marrow in the bones is not natural, in fact it's a terrible idea.
Finally managed a bowel movement...all is well with the world!
9.30 am this morning I explained what happened last night to the nurse, and how I never wanted to re-experience it...she talked to the doctor and told me that I should not reduce the dosage and to take pain killers to deal with the pain.
So I took the two pills again and at the first sign of nausea I took zofran, dealt with the chills by using two heated pads and took an ibuprofen as I started feeling the aches come on...so far so good...I have nothing too dramatic to report....and in one hour I'll go out and see how I'm doing energy wise...
Hopefully the taking all these medications will amount to a positive outcome....
Update....the fatigue is real, I could hardly get to Trader Joe's and back...but, it's very hot and humid in Manhattan today, and I think a little green tea before going out might have helpe boost my stamina.
More drama will follow I'm sure....but right now I'm happy to have no pain yet enough appetite for some serious eating...
Jennifer...I'm so sorry about the trial...it's funny....as I was going through my hellish night, I remembered your immunotherapy trial at MSG and wish I could take it with you! I'm sure something better will come along...when I asked my MO about immunotherapy trials at MSK he shook his head...who knows maybe it would have turned out to be a waste of time after all
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Hang in there girl! Thank you so much for sharing and joining the trial. Thinking of you!!
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Thanks Chemokaze! Still uneventful day....managed to eat a late lunch without any problems....
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Oh Frisky,that effing sucks. May each hour of each day get better and hoping you quickly recover your strength! You'd been doing so well! Dang. Thinking of you, sending peace, good mojo, and cookies from Texas.
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Kattysmith I welcome all your love and gifts, especially the cookies!
What’s going on with your trial? Are u back on it?
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Frisky MiaoMix Thanks for the detailed diary!! Whoa, how freaking many pills are you supposed to take in a day? I do hope with all of this you are off the FenBen for the moment. Hang in there, the bone pain could be some cancer flares, no?
We know the drug is incredibly strong, 100x that of Ibrance, and then on top of that a killer CDK2 inhibitor. So why do they not start with a smaller dose and work their way up? I guess they are, and you just drew that straw of who got the most?
Its very frustrating that you cannot get information out of the nurses about what the trial is seeing in the way of responses thus far. Perhaps they have no idea what people are seeing at other institutions, and you may be the only one at your institution for all we know?
Hang in there and pay close attention to how you are feeling and responding. Do you still take the Zofran before the pill, what is that supposed to help with?
thanks for all the info..0 -
cureious the zofran eliminates nausea but causes constipation.
So tonight all was going well...I had had dinner around 7.00. Three hours before having to take the medication
An hour after taking the pills I did not feel the usual chills, and no nausea symptoms, however suddenly I started throwing everything up. The soup I had eaten hours earlier and the two Pfizer pills, all floating in the toilet.
The moral of the story...this drug so far has been very unpredictable....next time I will take the zofran right after the one hour mark....won't wait for the nausea to manifest.
The good news: tonight I hope to finally get a good night's sleep.
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Frisky, yes, I'm still in trial and started my 6th cycle (!) in mid-May. Later in June, I'll have my next scan and if I clear that hurdle, it'll be on to cycle 7!!! How time flies etcetera...etcetera...etcetera (I'm channeling The King and I this morning).
In 2015, a wise and dear rabbi friend who's been through many lines of treatment like us gave me some invaluable advice about anti-nausea meds based on her own experiences. She used to set her alarm to go off in the middle of night, so she'd get up and take a Zofran (or whatever), then go back to sleep, so she could stay ahead of the nausea. I didn't do that consistently, but I did take them before I got nauseated, something she drummed into me. It sounds like that is what you're planning to do, too.
Constipation is so awful. I dread it and watch my bowels like a hawk! I have found that a few nights of Senecot helps - it's a gentle softener. And of course, good old prune juice.
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thank you for these suggestions Kattysmith! That makes sense....I'm going to try them this morning...I already have the senokot.
I hope you get good results from the scan and can continue with the treatment...big hug from the big apple
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day three of new and improved ibrance saga
To ensure there was no undigested food in my body that could interfere with the med, I ate a little fruit at 4.00am. My appetite has diminished greatly anyway, so there's no suffering.
We're having lunch at a great Italian restaurant at 12.30 and I expect to eat a regular meal at that time. But, I'm not sure when to take the miralax...have not had a bowel movement in 24 hours.
10.15 am. I took the 2 pills as prescribed and won't eat or take anything else for an hour. I will, however, take the zofran right after the 60 minutes are up....
Noon: Okay...taking the zofran right away worked...and I must say it also stimulated my appetite. This time I experienced no chills and flue like symptoms, so now I'm going out to have lunch....bon appetite everyone!
Got off the couch and I have no energy whatsoever...will drink a green tea, so I can walk to the restaurant around the corner....
Thank you for the hugs Candy! They are appreciated!
2.00 pm back home from the restaurant because, although the weather is amazing, I'm still exhausted....and couldn't wait to come home and take a nap.
I managed to eat a three course meal...but I will soon have to figure out when to take the miralax
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Frisky--- My prayers for you this morning. You are sooo strong to be on this trial for you and for all of us. Keep us posted. Hugs.
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Frisky, I am praying for you, your body to get used to the new meds and you to be able to enjoy your days!
Much love. Elena
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Frisky, stand up (if you can) and pat yourself on the back for all of us who depend on heroes like you who help sort out the drugs we'll be taking in the future. May your side effects continue to diminish, may you poop on schedule with dead cancer cells making their way into the sewers of NYC! I'm praying for all of that!
Love from PatGMc
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Frisky- thanks for all this information- very interesting and I have great hope for this medication !
I can send Naniamo bars since son is home from Montreal for a few weeks.
Hugs!
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Pat, Nkb, Elena....thank you for your good wishes...and affection...I hope my efforts pay off for the benefit of all.
One thing is certain...the SE keep on changing and arediminishing somewhat...maybe my body is getting used to it....being regular is my biggest challenge right now....tomorrow morning will be 48 hours.....
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Unfortunately, I just developed my first liver met while taking Xeloda. My oncologist is suggesting a Phase 1 trial of the oral SERD G1T48 by G1 Therapeutics. Alternatively, I could go on A/A or alpelisib/Faslodex. My past treatments: became Stage IV while taking tamoxifen, 18 month excellent response to letrozole alone and then no response to Ibrance/Falsodex, followed by 10 months on Talzenna (Parp inhibitor) and just finished 6 months of Xeloda. I have an ESR1 mutation (Y537S) along with PIK3CA and PTEN somatic mutations. I'd appreciate any thoughts. I was assuming that with new liver involvement, my oncologist would suggest an IV chemo, but she wants to try a hormonal. I'm also planning to see an interventional radiologist and a surgeon to investigate local liver treatments.
Jennifer, I'm so very disappointed that the MSK trial did not work out for you! I hope that your search for a new treatment/trial is producing a choice that you feel good about! I understand the frustration. I'm not eligible for Morpheus (Tecentriq combos) because I've already taken Faslodex and I'm not eligible for the oral taxane trial at Stanford because I've already taken Xeloda. Sigh!
Frisky, Thanks for sharing your experience on the improved Ibrance, PF-0873600. I love your sense of humor! I get terrible constipation from zofran. After I had Cyberkinife to a spine met, the nurse gave me a high dose zofran and a steroid for inflammation. I literally had to take the pills in her presence. I seriously contemplated pretending to swallow the zofran and keeping it in my cheek. LOL I was happy to take zofran, but knew the very high dose would leave me terribly constipated. I've also had good luck augmenting with ginger tea for nausea and Smooth Move tea for constipation. I will pray that your side effects improve and the treatment works 100 times better than Ibrance!
Best wishes!
Theresa
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Frisky, Hope you are sleeping well and tomorrow is a better day!
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Frisky you are amazing. Thank you for sharing your journey.
Tanya
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Frisky, you have had a rough few days. Thanks for giving us a play-by-play. I hope the nausea and other heinous side effects subside soon. Great that keeping ahead of the nausea with the consistent Zofran dosing is helping a bit. You may already be doing this but I recommend keeping a stash of ginger candies around. I use hard ginger candies my cancer center gives me - I have some in my desk at work and my purse at all times - as well as sugared pure ginger chunks from whole foods. I do not particularly like the taste of ginger but they do a surprisingly good job of holding off or slowing down nausea waves. I feel your pain re: constipation. I had a bad experience in my recent clinical trial of the FGFR inhibitor with that - I went a week without a bowel movement. I was worried I had a bowel obstruction. Nothing worked - dietary assistance (yogurt, high fiber foods, ACV, prunes, prune juice, water loading), fiber pills, stool softener, Miralax. Finally, I was able to get relief with Milk of Magnesia. I went through two rounds of that and the major constipation finally subsided when I lowered the dose of that medication. Whatever you take, it works best when taken at night, before bed.
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JFL, Theresa, Tanya, thank you all for your support, andsharing your coping mechanisms regarding zofran and the constipation. I like ginger, so I'll get myself some of those chews and the milk of magnesia today...
Last night, I tried a new tackle. An hour after taking the pills, around the time the throwing up seems to take place, I went to bed and quietly lied down without taking the zofran. I realized that the throwing up happens without a lot of warning, the nausea is in a way, non existent, but the whole event is generated by the smallest movement. Getting up and walking about for example....
It worked! I managed to keep the pills down, and to fall asleep. I woke up around 1.30 am and took two senna tablets with a little water. I had taken another two earlier on.
This morning I woke up with a tremendous tension headache that spreads down into my neck and shoulders. I took an ibuprofen....seems to be helping.
Then the weirdest thing happened....When I went to the bathroom, I was so relieved to have a decent bowel movement, but when I looked there was nothing in the toilet...I had my first non-existent, ghost bowel movement....after a few minutes, incredulously, I went back to check with a magnifying lens and detectives eyes...nothing...I had imagined the whole thing.
I have four hours before the next session, and have decided that I must get a real bowel movement before continuing....I have miralax in the house...will drink it before breakfast....
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Okay, this may be too much - WAY too much - info, but my first nightmarish constipation happened when I first started chemo late in 2015. Nothing I tried worked and sitting on the pot straining was so painful unproductive and frustrating. I remembered the positions that worked best when giving birth to my son back in 1981 - I did natural childbirth. Soooo, I got some newspaper, spread it on the bathroom floor where I would be kneeling, took off my pants and underwear and assumed the position on the floor on the newspaper. I knelt down (you can fold a towel under your knees for comfort) - and spread my back legs a little, so I wouldn't poop on them. Then I leaned forward and rested my head/chest on my arms on the floor and butt up in the air. And PUSHED. It wasn't long before I had a successful bowel movement.
That's the nitty-gritty. I only had to use this method twice and it ain't pretty, but it worked. I found that making loud noises helped, too, just like in giving birth! I told my hubby just to ignore me unless I yelled HELLPP! The cats were all at the bathroom door, concerned, I'm sure.
Katty
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Kattysmith you have me laughing! Everything is on the table—or better yet, on the floor—when having a bowel movement becomes essential! Thank you for sharing your solution
Just returned from an hour walk around Washington Square Park....
Two hours before the start of my next session, I realized my energy was back to normal, so I decided to get some exercise. One hour later, however, we had to make a quick u—turn.
Tummy grumblings were presaging a fortuitous event.... we rushed home and got into the bathroom just on time before my constipation problem was over in within seconds. Alleluia! Praise the Lord and those Senna pills! I'm literally relieved in more ways than one
Now I have an hour before the start of the next session. Again, I will attempt to resolve it without zofran and see what happens...
Update...I was so hungry and the baguette, still hot from the bakery down the street tasted too good for a possible regurgitation....I took the zofran, knowing the overnight action of the Senna can save the day....and I had the most satisfying lunch. We ate a european style tuna salad, with olives, capers, red onion and celery that was super delicious...so all is well with the world...this protocol is doable...
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Fantastic, Frisky!!!
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Katty and Frisky--- Oh my, I am sitting here at my computer laughing !!!!!!!! Thank you, I really needed that !!!!!!!!!
I have chronic constipation, so I feel your pain.
Katty- I may have to try your solution sometime. I have never had a child, but hey it is worth a try. My cat would definitely think something is wrong!!!!!!
Frisky--- Ghost BM. Never had one of those !!!!! Alleulia, and Praise the Lord, you had some relief
Here is a recipe that worked for me yesterday----Glass of Prune Juice with a large handful of nuts on an empty stomach followed by a walk on the treadmill. Results. May not work next time--such is how it goes with me.
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