Are you currently (or have you been) in a Clinical Trial?
Comments
-
rk… i am so sorry about the progression..I understand very well the dissapointment.
Enhertu is kicking my butt… :(. worst drug Ive done out of 9 lines of treatment Please pray my stomach acid resolves its soooo bad and nothing is helping.
0 -
@nicolerod Ive already said a prayer for you and will continue to do so. 🙏🏻 I think of you often.
0 -
Nicole-the GI side effects the first few months are difficult- I had trouble swallowing and upset stomach and constipation. turned out a lot was "reflux" which I had never had before- has all sorts of weird manifestations. I kept up with the zofran as directed 800 twice per day for 2-3 days and then as needed. didn't overeat and then bend over, tried tums, Prilosec (which helped) and took some Ativan at night to sleep and get rid of any lingering anxiety and nausea. Senna for constipation. was tired also- naps helped. I did not vomit- many people do. I had the reflux for the first few cycles- no longer. I also no longer need Zofran after infusions- still get it as a pre-med..
premeds for the infusion are 2x 800 zofran and 12 mg Dexamethasone steroids - both oral.
Wishing you a much gentler next cycles- it worked very fast for my friend with stomach mets - symptoms relieved after first cycle and TMs way down- my bone pain went away after first cycle also, my TMs not really going down much.
0 -
Dear Nicole, uhh, seems Enhertu is tough… but our MO used to say: if you suffer, means suckers also suffer. Let's hope things improve quickly.
I also read a bit more about TILs yesterday, and same TILs were found in the body several years later after disease control, means they are also staying there and patrolling the body. Nice. I remember when we talked to our IO, he somehow mentioned that if there are no tumors, TILs are difficult to find, while CAR-Ts are always in the blood or lymph, so simple blood/lymph sample is enough. Hmm… Nicole, please stay strong on Enhertu, and TILs are cooooming!!! Hugs,
Saulius
0 -
Thanks Saulius… the NIH trial checked in on me the other day and said that the next screening process is July I have to have scans…if my liver is still normal numbers and no brain mets….then we move forward..they said the cells have to grow until July. So my MO is scheduling scans for end of July (she wants 3 infusions before scan July infusion is July 11th so scans will have to be after that)… IF i even make it to the next step , I am quite worried about the washout with chemo of immune system..and then the immunotherapy and immune boosting drugs they give when they give you the TIL's…. its high risk for things to go bad … :(.
0 -
@nicolerod There is no doubt that you are going through scary times and I so wish things were different. But remember that you’ve got a solid plan (as solid as can be given the situation) and a great medical team who seem to be pulling out all the stops for a lady who is fighting voraciously. And you’ve got so many people on BCO praying and cheering you on. You do what you can do to fight and then leave the rest to God. Please try to find a way to calm your mind - meditation, prayer, go through pictures of happy times, ask your husband for a good back scratch or head massage. Whatever can give you a few moments of peace. And then build on that peace for a few more minutes. A good mental state is important for your immune system. ❤️🙏🏻
2 -
Dear rk2020 - your wishes to Nicole are amazing! I should also apply them to myself…
Dear Nicole, the plan is really solid, we are holding our fists for you. Hugs,
Saulius
1 -
Nicole, I’m sorry Enhurtu is so rough for you. My first infusion was like nothing I had ever experienced before…total hell. I started taking Zyprexa on days 1-5 at night. It helped so much. I was able to manage the side effects of that drug and I knew which days I would need rest. It’s a tough one but it gets better. It worked for me for 7 months. Sending you all the best.
1 -
Novas girl thanks what kind of drug is Zyprexa? I see you have the chemo that they will give me to wipe out immune system cyclophosphamide…..
RK thank you for all your encouragement!
Saulius thanks for fighting with me!!!
Lastly I forgot to mention I found out that I now have high blood pressure so we tried 5mg of lisinopril..but still high now going to 10mg….
0 -
Nicole, Zyprexa (olanzapine) is an Antipsychotic drug used for chemo induced nausea. I take the pediatric dose 2.5mg.
Sorry you have high blood pressure now. Probably all the meds we take over the years. I hope you get it lowered and the medication is easy for you.
1 -
Nicole: I’d maybe try Losartan for hypertension since it seems to have anticancer properties. It has often had dangerous impurities in recent years, though, so maybe insist on brand-name.
Due to lobular mets, I get ultra-symptomatic with acid reflux, vomiting bile, and ascites when my treatments fail. Sleeping on a wedge pillow, essentially sitting up, helps some.
0 -
RK2020, Sorry you have this scare, but it does sound like Enhertu should work!
Nicole, Saulius is right, TILs>CAR-T, greater diversity of targets, etc.
MD Anderson (talking about melanoma): What is interesting is that TILs appear to be a long-lasting therapy. We’ve seen evidence that TILs can be found still patrolling the body several years after infusions, and they can eliminate recurrences before we’ve even detected them on scans. Some patients can be tumor-free for many years after a single TIL infusion.
What does the NIH group say about persistence? Also, for those two women whose cancers came back but they radiated and they are now going around drug-free, did they have to re-infuse the TILs?Do you have to take IL-2 or are the TILs genetically engineered? Is there a fix to prevent telomeres from shortening too much as cells are rapidly expanded in culture (short telomeres leads to cell death)…
1 -
Hi Cure…. are you asking me those questions about NIH? I don't know the answers? I don't understand the question about persistence? or IL2?
0 -
Hi Nicole, Its almost been a month, so glad you are hanging in there!!! Yes, what I meant was what does NIH say about the persistence of their treatment? They have been doing the most upgrades to the procedure, so I'm so curious. One of the drugs they give to activate the TILs is IL2, which apparently comes with SEs, and some reports suggest they are engineering the TILs to make their own IL2 and stay active, so I wonder if they do something like that. And if they do other things to make sure those TILs persist in the body and don't die out or need to be re-infused, MD Anderson says they last a long time and I'd imagine they are using the NIH procedure since it was the first.
So a July infusion seems like almost two months to isolate, enrich and grow up those TILs to high density for infusion. Is this the time when you stay in the hospital for awhile? When do you go back for that?! Agreed, its scary, but if you are in the hospital then it will be OK, they will be checking on you all the time and they've got all the best meds for nausea and whatever…
0 -
Cure… here are the answers to your questions…
If my scans are stable in July and liver numbers good what happens then?
It will depend on your TIL screening, hopefully we will have an answer by the end of July and if your scans are stable and liver numbers good we can bring you in for a quick clinical evaluation, labs, and hopefully come up with a treatment schedule for August-September!
Also do you use a drug to activate the TILs called IL2? Is that one of the immune boosting drugs you mentioned? Some reports suggest they are engineering the TILs now to make their own IL2 and stay active in the body?
Yes we give high-dose IL-2 every 8-24 hours as soon as 3 hours after you get your cell infusion. This cytokine is both a T-cell growth factor but also acclimates the cells into your body as they have been growing in the lab in IL-2. It is definitely an “immune-boosting” drug but different from the Pembrolizumab (this drug only binds a tumor-Tcell interaction that can allow the tumor to SUPPRESS the Tcell response/activation). We are not currently using genetic engineering to enhance IL-2 production or reactivity in our infused T-cells as we have not yet attempted to genetically engineer TIL (TIL are very fragile as they are grown outside your body for 3-4 months), genetic engineering is at the forefront of cell therapy but it has not yet added anything of clinical value.
1 -
Nicolerod, Just wanted to jump in and say I am so rooting for you gal. Reading your history and seeing your determination inspires us all. It certainly does take courage to step forward into this new world of clinical trials that are at the forefront of great success stories. I do believe you will be one!
0 -
Dear Nicole, you are a pioneer of TILs in these forums. All the best for you and let these ,,fragile" TILs grow well. Hugs, Saulius
0 -
Thanks guys!! Does anyone know anything about TCR? That is what the TIL trial goes to if my cells are not potent enough for the therapy I know nothing about this?
0 -
Excellent, Nicole,Just that quick back & forth was very informative!!!
0 -
Dear Nicole, as far as I know TCRs are lymphocytes (but not TILs) that are first genetically re-engineered to target some special receptors on cancer cells. Any clinical trials on your mind?
Saulius
0 -
Well the guy at NIH said if this TIL doesn't work out that the TCR would be the next try but its like a long shot or something like that he said (I can't remember exactly now) :(
0 -
Cancers with PI3KCA mutations, or AKT mutations, have high levels of AKT kinase and are responsive to AKT inhibitors. The first AKT inhibitor, Captivasertib, was just submitted to FDA and is expected to be approved before the end of the year. Unlike the PI3KCA inhibitor, Piqray, Captivasertib does not significantly alter blood glucose levels and appears to be easier to take. The trials showed that those without AKT mutations responded just as well to Captivasertib as those with an AKT mutation, so this drug can be used by both types.
2 -
Looking for thoughts/ideas/suggestions -
After having cardiotoxicity on Xeloda, I tried Travera testing again on two sites (lymph node and liver) to see if I might be able to come up with some other treatment besides IV chemo. Lymph node is aggressive and triple negative, liver is strongly ER+. Unfortunately, Travera did not receive enough live cells for testing. Ugh. However, the biopsies gave me some additional info:
- Lymph node: High grade with neuroendocrine differentiation (huh? - that was a
surprise to me), ER-/PR-, HER2- (1+), androgen receptor (~50%), waiting to find
out about PD-L1 status (I think my MO may have requested FoundationOne) - Liver: Strong ER/PR+, HER2- (1+), strong androgen receptor (>90%)
I looked into androgen receptor (AR+) trials, but most exclude anyone with a history of heart
issues. Given HER2 low status, Enhertu is a possible option, but heart effects
are a concern there as well.Unless I can find a different option, I'm slated to start Trodelvy this week or next. I am also going to do radiation on my lymph node area because it's painful and has grown very quickly. I have been in contact with the NIH TIL trial that nicolerod has been involved with, and I'm working to gather necessary scans (mainly waiting on MRI of head). I am also thinking about reaching out to the trial "Vaccination With Flt3L, Radiation, and Poly-ICLC" (NCT03789097).
Before I officially agree to start Trodelvy, is there anything else I should consider? Anything else you can think of to ask my MO?
0 - Lymph node: High grade with neuroendocrine differentiation (huh? - that was a
-
@cure-ious Thank you for that information. I just found out tonight I have the PIK3CA mutation. I had genetic testing done on my tumor from 2019 to see if I had ESR1 as I was interested in the Camizestrant trial results. I don't have ESR1 but with the PIK3CA mutation being discovered I have some further research to do.
0 -
@emac877 Your bio doesn’t include data on what meds you’ve been on but tumor material from 2019 seems kind of old. A lot can change in that time. I’m sure you’re still PIK3 because you’ve never targeted that yet but not sure if I would trust the ESR1 result. Just my thoughts.
0 -
Emac- I would get a new test for ESR1 mutation as Rk says. I had 2 negative tests for ESR1 mutation, after AI and Fulvestrant and have been off any estrogen blockers for 4 years , my MO decided to do another ESR1 test- doubting I have the mutation- but, with new drugs coming along - now I do have the mutation.
Jsniffs- Trodelvy does seem like MO's first choice for ER- tumors- lots more data on its use in that setting, hope someone else can chime in.
0 -
@rk2020 and @nkb Thank you. I have scans on the 27th and an appointment on the 29th with my oncologist's PA. I will ask about that. I have been stable with sclerotic mets for 3.5 years so maybe they went with the piece of tumor they had since mine aren't actively growing? I also don't know why this wasn't tested for in 2019 when I was first diagnosed stage IV. I have the old patho report but not the latest one. I think I'll bring that with me and ask.
I've been pretty chill about my treatments so far but this scared me a little. I am still on my first line of treatment for ER/PR+ HER2- bone only mets. On Verzenio/Faslodex/Xgeva they have been stable for 3.5 years. I've done rounds of radiation to mets but no other treatments. My MO won't say NED because he said there is still sclerotic evidence of disease. I had deleted my info on the old forum because it showed up weird and the new forum is a little daunting and also shows up weird so I just haven't taken the time to sit down and fight with putting it all in. I will do that at some point, I know it does help.
0 -
emac,
I think creating your "Post Signature" is easier now than before. You don't have to enter each piece of data one by one into a program like before. Go to your Profile page by clicking on your Image. Click on "Your Post Signature" in the list. Now just type whatever you want in the text box in the order and format you want - dates, diagnosis, treatments, drugs. It's easy to edit if you want to make changes. Then follow directions to Copy Current Signature, Continue, and I think the next and last step is Paste. When you log in again your signature should show up. At least that's a close approximation of how to do it. The site managers helped me figured it out.
0
