Are you currently (or have you been) in a Clinical Trial?
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Theresa...you've received various responses to your question. I hope that whatever course you undertake it's for your maximum benefit...
I have been asking myself a similar question...what are my options if I can't continue taking this medication?
I've been unable to find a definitive answer...my mind is still wading as if through cotton...
So, I will give the Pfizer drug another chance, however, this morning I'm taking a different approach.
Since the vomit comes up suddenly and it's kind of traumatic....I have decided to take the zofran before the medication. Same solution for the catatonic state. I've taken the Ritalin already. We'll see what happens. If I can eliminate at least two of the most troublesome SE effect, I think I can cope with the rest.
The physical fatigue is also a factor, and will be tested later on today when I'm meeting a friend for lunch. Will I be able to walk to the restaurant and not fall asleep for couple hours? We'll see...
Update....two hours later...lo and behold....the Ritalin has kicked in so effectively I'm conducting a merciless Marie Kondo to my three bedrooms apartment....I had been unable to put things away after I had to pause on the renovation, and had been unable to do any real cleaning either ....well...that's all over now! I've put tools and supplies away, and they won't come out till the work resumes....being on Ritalin has its advantages...it's also time to take the medication and now we'll see how and what will happen....
50 minutes after taking the medication I'm experiencing shortness of breath, aches and pains, and extreme fatigue...I wish I didn't have to go anywhere...
60 minutes after, I had to cancel my lunch...my mind now is lost in a sea of cottony forgetfulness and emptiness but no signs of throwing up...I think I got that part right...
...this medication might be useful to rehabilitate criminals...taken regularly,.they won't remember who they are, what they did, and what horror they experienced in prison and childhood...
Update: 2 hours and 30 minutes later, all the major SE have subsided..I still have no mental or physical energy, I've just popped the second Ritalin as prescribed ....hummm...I have three loads of laundry sitting in my cart that need doing...let's see what happens...will I turn again into speedy Gonzales?
Yes folks....I'm going into the basement to do the laundry...8grams of Ritalin...who knew?
my slumber days might be over....
I just put away my neatly folded laundry ...whoeeee! I can't believe what's happening to me....I might be baking a low carb apple cake next...who knows? It's only 3.30...I'm gonna take the ingredients out of the refrigerator while I'm still under the influence of the Ritalin....
5.40 pm Yummy! That's all I have to say!
Thank you Ms. Ritalin! You’re the best...did I tell you how much I love you today
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Frisky, Thanks for the good wishes. I have decided to go ahead with the liver resection this afternoon.
Pre-medicating with Ritalin and Zofran is a great idea given that your side effects are predictable. I'm sorry that, despite the pre-medication, you are still experiencing difficult side effects.
You always make me laugh. I need to try Ritalin. My house is in serious need of some merciless Marie Kondo action!!! I will watch episodes of her show while I'm recovering from surgery!
When do you get a scan? It would be nice to know whether super-Ibrance is working against your cancer. You've tolerated a lot. I hope that your oncologist will be able to help with the side effects.
Best wishes!
Theresa
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I will get a cat scan in two months....god luck with your resection Theresa...I might follow in your footsteps with my own liver lesions if this medication doesn’t take care of them....
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Theresa. I'm glad you made your decision. Prayers for you and your surgeon.💞
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Frisky, do you think Pfizer reduced the dosage of the trial medication just in your case or do you think or know if the reduction in dosage applies to everyone currently in the trial?
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Meadows, I'm pretty sure the dose has been lowered for everyone in the trial...
Two days into the trial, I told them the SE were unbearable, and no one was going to take it regardless of efficacy....I stop taking it altogether a day before the emergency call...and had reduced to once a day before cutting it off completely...i'm happy for the official reduction, and today by taking all the other medications, I've been able to cope better with the reduced SE....
Let's hope it works...long live the Ritalin
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I am glad you are better today and are managing with reduced side effects. I am half considering trying to get into this same trial at Sarah Cannon in Nashville but I have not sent them my records yet. I backed away a bit after hearing about your troubles with it last week and also considering my recent bad experience with a relatively new trial at Vanderbilt.
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I think two pills a day with the support of all the other medications is doable....
Tonight, one hour after I take the second dose, I have to take Senna so I can go to the bathroom tomorrow morning....
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At the hospital this morning for a 12 hours session of check ups...
Have not been able to move my bowel this morning, I had to take another zofran upon waking up because the food eaten 10 hours earlier was about to come up....
Love, love, love the Ritalin! I intuitively feel that it might reinstate the Kreb cycle to oxygenation instead of the cancer producing fermentation....just a thought....but one thing is certain....it wipes away all the woes associated with cancer....I'm active and have energy and that's an amazing gift....I couldn't but share my enthusiasm with my palliative care team....
Noon Update: Today I experienced no SE an hour following the intake of the med. I walked around the floor and managed to go get a cup of decaf coffee and eat something without any problems.
I also met my new MO, and we had a great talk, she's going to prescribe an anti nausea that doesn't come with constipation or sleepiness. I'm happy! That should resolve the last problem I have regarding this treatment.
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Thats good to hear, Frisky. I had to take an anti nausea pill with Xeloda last week and I was sleepy and felt so bloated. This week has been better, so I just stopped taking the nausea pill and I feel so much better. I hope the new anti nausea pill helps you feel better!
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Happy to hear that Ann....there's nothing more satisfying than being able to eat without problems and have normal bowel movements...
Still at the hospital in my BarcaLounger listening to Luise Hay...now I have only 7 hours to go and three more blood draws...
4 more hours to go..listening to Jacqueline DuPre play the adagio moderato of Elgar and Dvorak brought me copious tears of joy....what an incredible combination of talents! Life is so beautiful and my heart is swelling with gratitude...
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Frisky- Wow, these trials are so involved!! I was just reading that apparently Abemaciclib also has some CDK2 inhibiting activity, in addition to the CDK4,6i- so, in essence what you are taking is more like a Super-Abemaciclib- but, where is all of this nausea coming from?! That's not something associated with Abemaciclib. Of course, the CDK2 inhibitor you are taking is far stronger than the partial inhibition Abemaciclib confers, but still if everyone is throwing up all day like this, the new reduced dose may still be too high. Assuming that they don't decide to lower the recommended dose even lower, they would still probably want to have a couple of lower doses to offer patients who have problems, and presumably they'd have to test those lower doses and show that they still have efficacy. It is fascinating to see how these decisions are made, and how carefully they check out how all of your diffrent systems are functioning when on the drug! It does not sound like you are having any elevated liver enzymes, even with the ritalin and anti-nausea add-ons? Good Luck!!
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Thanks Cureious! I'm slowly adjusting to the SE and instead of racing to take out the fires, I start the day by taking the various meds that prevent SE from interfering with the actual taking of the medication.
The MO running the trial, whom I met today, has applauded my solution, but to tell you the truth this is the second day I haven't had a bowel movement and tomorrow morning that will be my first priority.
Half the dose is a lot better, but without the Ritalin I think I would still sleep a lot....I hope all these days spent at the hospital being tested pay off to benefit everyone!
Thank you for bringing scientific clarity and perspective to my experience. Right now I can't wait to go home...12 hours I've been hereeeeeee and I'm tired although the BarcaLounger is pretty cool
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Remember Frisky, if you still need to have a bowel movement, you can "assume the position!"
But I hope it doesn't come to that and that today is peaceful, restful, and uneventful.
Katty
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Hi all, My liver resection went well, but the recovery is a bit more painful than I expected. I'll find out Thursday whether surgery will have kicked me off the Phase 1 G1 Therapeutics oral SERD trial. Most likely it will, then I need to select another systemic treatment, either A/A or alpelisib/faslodex. I have not taken exemestane, but I progressed quickly on Ibrance/Faslodex. Letrozole worked wonderfully for me for 18 months as a first-line.
Frisky, I'm glad that your side effects are improving a bit with the lower dose and pre-medications! Having a bowel movement has also become a priority for me. I'm not sure that I can assume Katty's recommended position with my incisions. The things we have to go through! Please let us know when you find out the name of the non-constipating anti-nausea med. Zofran works well, but makes me very constipated.
Best wishes to all!
Theresa
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Kattysmith....i managed to have a small bowel movement without the acrobatics, but the really good news is that I didn't have to take the zofran this morning. I managed to control the regurgitation by waiting till the symptoms passed before attempting to eat breakfast...it went well this time around.
The Ritalin, meanwhile, kicked in and I found myself, soon after, painting doors and concentrating on the sort of details that I had set aside for a better day. After a sweated a bucketful, I stopped, looked around happy with the results of my efforts.
10.00 time to take the medication and rest...2 hours later when I got up I felt lightheaded and weak..time to take the other Ritalin....
Update...eating a little lunch didn't go well...I threw everything up an hour later...2hours after taking the medication...BUt hopefully i'll be able to move my bowels tomorrow morning.
Snooky...I'm so happy about your results so far.....I also appreciated the explanation from that woman, which I'm assuming is part of Joe's group on FB....
sending you many good wishes that the radiation is harmless to you but effective in getting rid of what cancer cells are left...I believe that continuing taking the fen Ben is a good idea...as they work on different modalities.
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Oh Frisky, Sheesh, it so warms my heart that you're feeling so much better. I pray it continues for you. ( I can't manage to take Zofran, the headache it gives me is bad)
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2.00pm I am attempting to keep down a different lunch...this one is 3 hours after the med...
TJ toasted rice tortilla with melted cheese and chopped cucumbers is being digested as we speak...
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today I threw up breakfast one hour after I took the medication, that I had eaten 3 hours before,
Isn't it logical, that I threw up the medication as well, before it had time to go around killing cancer cells? What should one deduct from the fact that my body keeps on refusing this medication? Only time will tell...
This treatment could, on the other hand, turn into a good weight loss program.
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Frisky - Congrats on the bowel movement. I'm so sorry that you are still throwing up. I don't know how long it takes for the medicine to get into your system. They may be able to tell you based on all the blood draws (PKs) they did after you took your first dose. Although that information may be confidential.
I'm finally feeling a little better today. I'm still on painkillers at a lower dose and haven't managed a bowel movement. Ugh!
Best wishes to all! Theresa
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Hello, all...
I am about to head out to start the first infusion for the novo/ipi/biclautamide trial. I am surprised at how nervous I am. I think I've done too much reading about the incidence of severe autoimmune side effects from the ipi/nivo combo. I am getting a lower dose of the ipi than has been used before in combo treatment, but still know that I need to be on alert. Trying to keep in mind that only around 5% have any of the severe side effects, although >60% have moderate effects, but not so severe that they get removed from treatment.
It will be along day, although there is no PK for any of these meds, so it's not going to be as long as it could've been. I have some pre-infusion labs, meet with the PI and the trial coordinator, and then get the two drugs in succession, with a break in between the first and the second drug, and an observation period after. (I'm pretty sure it's novo then ipi, but I will find out for sure today. Not that it really matters...)
I'll update after I return late this afternoon.
Elizabeth
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Another lurker here 😂. Thanks so much to all of you who are sharing your trial experiences. Elizabeth, I hope your side effects are minor and that you will feel well enough to enjoy time with your daughter tonight. Warmest wishes for you!
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EV11- Good luck! Thinking of you-thank you for doing this trial
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Elizabeth...I hope all went well with the trial today, and that you will receive great benefits from the combination of these two medications.
Please let us know what you experienced...best of luck to you
Theresa....I hope you moved your bowels today...I totally understand how stressful it is when that doesn’t happen...
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I must have thrown up all the medication before lunch because right after I was able to eat and digest various foods, mixed berries and more recently a bison burger with raw vegetables without any problems, or a hint of nausea
Tomorrow morning I won't eat breakfast....I'll take the medication...then I will wait a few hours before eating...let's see if we can make this medication work...
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Okay folks it's possible! I took both pills, one last night and one today without throwing up. The key is to let a good four to five hours between the ingestion of food and the pill taking...not the 2 hours before and one hour after as specified, that schedule definitely requires zofran or a similar medication to keep everything inside...
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So, Frisky- you could eat an early dinner at 6, take the pill at 10-11pm, then take the next one before breakfast say 9am, then how long after that would you have to wait to eat?
Really they should just make one pill a day..
Are you having any trouble with ANC levels or liver enzyme levels?
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Cureious...I need to wait four to five hours after a meal in order to absorb the pill without regurgitating the food and the pill.
I have breakfast around 6.00 am and take the pill around 10 or 11....then wait till 2 or 3 to eat lunch....it's all guess work right now...today was the first time I succeed...
it's important to remain immobile and totally calm after taking the morning pill, if I look down or make the wrong movement the vomiting becomes inevitable. I went back to writing my book during those long hours, so I didn't mind the stillness.
This routine unfortunately will mess up all my lunch dates which used to take place always at 12.30. This weekend will be particularly challenging
I think my anc is low and liver enzymes are elevated....but not excessively...the heart is also of concern with this medication
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Frisky-- the drug you are taking is really challenging. I'm hoping that you or the other patients can find a way to mitigate the side effects. (Do the trial coordinators pass any useful suggestion on to you??)
Is it once a day dosing? Can you take it right before bedtime, 5 hours after your dinner has had time to digest? That way you would not be moving about to trigger a vomiting episode. I hate that it is so unpredictable for you. More than the actual side effects, it would be the uncertainty of it all that would drive me nuts.
Thank you so much for being willing to endure this and to be creative in trying to figure out ways to make it as tolerable as possible. I hope your perseverance pays off and you get a routine figured out SOON!
Elizabeth
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I am about 36 hours post-novo and ipi infusions. I am definitely aware that my immune system is on active duty...I have many of the "I think I might be getting sick" sensations, although I know that I am not actually combatting an illness.
My scalp is sore, I have a stuffy/mildly runny nose, a slight sore throat....behind my eyes burn. And I am sluggish and slightly fatigued. Nothing dramatic...what is noticeable is a spread and increase in redness of a scattering of tiny, dry red slightly scaly lesions that I have had for the past few years on my sides along my rib cage, with a few scattered on my hips and lower back that come and go...they are back as well. Where I usually have 10-20 of this lesions, I now have 40-50 and they are redder than usual. I have never had them biopsied; always suspected that they might be a drug reaction-- but since I was off all medication for 7 weeks before starting the trial and they never fully disappeared --although they did diminish in number and intensity of color- I am at a loss for why there seems to be a resurgence and an increase in their intensity. I'll have to keep an eye on it. Immunotherapies cause a multitude of skin disorders..or perhaps it is just coincidence.
Thanks, everyone, for sharing my trial journey with me. I am trying to stay optimistic...The trial started in April; I am the fourth enrollee...already one person has had to be removed from the study due to seriously elevated liver enzymes, and one has had to have a delay in treatment for the same...but the other person is doing fine so far. It would be great if some ER+ patients get a decent response to IO. It would spur researchers and pharma to not dismiss our disease as "not suitable for IO." It does feel good to be able to help contribute to the understandings about this disease and treatment approaches.
Hope you all have something fun and relaxing in store for the weekend.
Elizabeth
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