Are you currently (or have you been) in a Clinical Trial?
Comments
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nicolerod- with the new format, I’ve stopped receiving BCO emails and have found it more difficult to stay on top of posts. 😞 Thank you for keeping us updated. You are in my thoughts and prayers. Hugs.
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Thanks Mods and Rk… Saulius… Radiation….We have a video call tomorrow morning with my RO…. Then I will be going to the NIH to be admitted for the liver surgery on Wednesday… ALL please pray my tumor has a lot of mutations they think are needed for successful treatment …..
I am trying not to get hopeful bc nothing has worked so far…but I am afraid…I do have some hope. And then my husband who never gets a gut feeling about anything tells me he thinks once I start enhertu he feels like it might give me some extra time… hope again….
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Nicole ~ I am praying that you will have all the right mutations for a successful treatment! I am frustrated because my liver tumor has developed so many mutations but there are not approved drugs to treat the mutations. Your trial looks promising and I am hopeful that it will work for you. ~Kar
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Nicole, I hope the skull met is quickly knocked out by your RO and you get pain relief. I’m so hopeful for the NIH trial for you. Enhurtu helped me so much, I think it will hold you until they are ready for you at the NIH trial.
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Dear Nicole, all the best for RO consultation and all the best for NIH surgery, keep us informed, whenever you have power to do so, as you are a pioneer. I do not doubt you have many mutations if your tumors are so resistible:/ Maybe finally science turns bad things into good things for us?:/ Hugs,
Saulius
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Following along Nicole and praying for you.
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Nocole— prayers sent for you
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praying for you Nicole
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sending good vibes, Nicole!
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Nicolerod, you are in my thoughts and wishes for a good turnaround. I like your husband's gut feeling.
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Please tell me. How to write to NIH Rosenberg? Is there an email? I want to send scans for review.
I'm from Ukraine. Maybe they'll take me?
I have two small metastases in my lung, a lesion on my ribs, and a tumor in my chest that has collapsed.
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Savaloko, This is a great trial, but there are many requirements, for example, there needs to be a sufficiently large tumor in an organ (liver, etc) that is readily accessible to be removed by surgery, because they need to sequence the tumor mutations and isolate and enrich the infiltrating T lymphocytes to re-introduce them after depleting the immune system.
There are several trials ongoing, for example:
Contact info: NCI/Surgery Branch Recruitment Center, 866-820-4505, email: IRC@nih.gov
Slava Ukraini!!!!
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Thank you very much. Is this a paid procedure for foreigners? How much could it cost? I am not a US citizen.
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They did not get sufficient sample from the peritoneum for the Travera testing. Huge bummer. The IR said how confusing it was…I didn’t think it was confusing at all…it made me nervous getting my liver and other biopsy from him.
I saw my MO today. He said we can add iver to to Trodelvy and Keytruda. He has a male breast cancer patient that is taking it. He does not want me starting it now. I need to see how I tolerate Keytruda before we add anything. I can do cyberknife on T8 but again he wants me to not add that right when I’m new to both drugs. The side effects from Keytruda scare me…hopefully I don’t have any of the permanent ones. I won’t have steroids in my premeds for my infusions next week. They don’t like to use them with Keytruda.0 -
@novagirl - So sorry to hear about Travera - the same thing happened to me (not getting enough sample to test). I think the provider who did my biopsy did everything right, it was just unlucky. I think Travera is going to have to figure out how to optimize obtaining samples. I like to think that we are helping them to learn and grow. It's still such a bummer!! Best of luck with your new treatment. Hugs.
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Savalo,
Here is what the NIH says:
Experimental clinical trials at the NIH Clinical Center
People from other countries can participate in clinical trials at the NIH Clinical Center if they meet specific medical eligibility requirements of the study. There is no charge for medical care received at the NIH Clinical Center. Please note U.S.
citizens and lawful permanent residents have priority for participation in these trials, and all non U.S. resident participants must pay for their own travel and lodging while they are in the United States.Keep in mind that this trial is hugely popular, because they appear to have cured one and possibly three MBC patients, and it hard for US citizens to get into already. Plus they added an age limit, patients have to be below 70 years old. However, the technique used here (TILs therapy) is becoming more popular so other trials are coming online that also use this technique, and some probably have sites in europe. The NIH seems to prefer late stage advanced cancers, perhaps because these have more mutations, however it is reported that this approach works just as well in later or early lines of treatment.
In addition, BioNTech and Moderna both are working on cancer vaccines that use the TILs therapy approach. In those cases, they also need tumors that can be resected (cut out surgically) so that they can sequence the neoantigens in the individual tumors. Then they express around 30 of the patient-specific neoantigens in the vaccine, so the immune system can target the cancer.
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PS Most TILs trials right now are focused on melanoma and lung cancers and many do not accept MBC patients currently, but presumably this will open up with time.
The UK NHS announced they will partner with BioNTech to create cancer vaccines for 10000 patients by 2030, they don't say which cancer types, but hopefully this will be open:
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PPS Recently reported in Nature, BioNTech got an immune response in half of the pancreatic cancer patients they tested. However, it is not clear yet whether the NHS-BioNTech trial will include metastatic cancer patients, or to prevent recurrences, so it takes some research to find a trial
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Here is one in Barcelona, but only for metastatic triple negative breast cancer:
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Thanks Cureious… finally TILs are in clilinical trial in Euurope!
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Thank you all for the well wishes and prayers. Surgery went well..just recovering now. Praying the tumor has a lot of T cells…they have to grow and this takes a several weeks. They also just let me now I will be have the aphresis tomorrow.
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Whoo-Hoo, Nicole!!!! Fantastic to get through that surgery!!!! Rest, recover, relax….
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Nicole, so happy your surgery went well!
Jsniffs-such a bummer the same thing happened to you with Travera. It made me think they were more apt to processing malignant fluid maybe I’m wrong though. The dr did an ultrasound and said I had zero fluid in either lung which I was thrilled about. It stumped me because my PET/CT
that I just had said I had a new moderate plueral effusion on the left and a small stable one on the right. No one can explain this to me when I ask.
I’m hoping the Trodelvy/Keytruda combo works on my HR+ cancer. What treatment are you currently on? Best of luck and big hugs to you too.
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Nicole - wonderful news. Ive been checking in to follow your saga and hoping that everything keeps going in the positive direction. You've been trying for this trial for so long. Rest easy!
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Woohoo Nicole - one step closer. Take care. I’m continuing to pray for the best possible outcome. ❤️
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Dear Nicole, have a great recovery! And whenever you have any news, please share them with us. Hugs,
Saulius
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That is great to hear Nicole.
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If too off topic…I will delete.
I just read a Practice Update published on Metastatic Breast Cancer entitled: "Genomic Complexity Predicts Resistance to Endocrine Therapy and CDK4/6 Inhibition in HR+/HER2− MBC". Lillie D. Shockney RN, etc makes the comment: "The public learns about the latest statistics for breast cancer mortality, with the American Cancer Society reporting an anticipated increase in the number of deaths from 39,000 to 43,000 between 2022 and 2023, respectively, and inquires, "what is taking so long to find a cure?" What they do not know is that there are thousands of subtypes of breast cancer." Commenters on BCO have characterized finding effective treatments for MBC as "whack a mole". Commenters also talk about the uniqueness of each person's tumor, response to treatment, and side effects. For me, Lillie Shockney's comment points out that treatment decisions are, on the whole, guesswork, no matter how skilled and experienced the MO, a reality that I've been slow to fully appreciate and certainly did not understand when I was first diagnosed stage 1A.
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weninwi- The more I learned about breast cancer, the more I learned how incredibly complicated finding a cure is. And if we ever do find something that’s incredibly effective at curing breast cancer, I feel it will work for a very specific sub set of us with a very specific set of cancer characteristics. I see the need for multiple cures. But this is exactly why joining a clinical study is so important. Even if a study fails or it fails for you, that still inches us towards a cure. Every clinical study advances science in some way.
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Hi all…its rough…
So I had to have a blood transfusion bc my Hgb was a little low (prior to the Aphresis) then after the Aphresis they felt I needed another one….well that 2nd one didn't sit well with me I felt awful… everyone says you are suppose to feel GREAT after a blood transfusion????!!!! Not me…. :(. We got to go home Saturday. I have 6 incisions and it turns out my liver segment 2 to be exact is right by the spleen so I have a good amount of pain on the left side not to mention I look pregnant… they didn't say they thought I had acites so I am assuming its just swelling from the procedure… again, this was NOT a punch biopsy (which is a piece of cake) this was a full tumor resection. I also feel really run down….. our son and daughter in law are coming to visit with the grandbaby they get here tomorrow late at night….I so want to be with them..and I want this time with them..so please pray my recovery speeds up and there is no complications.
The cells will take several weeks to grow…I orginally thought I needed a lot of T Cells but that is not the case I just need a lot of GOOD cells that they believe will help target the mutations. The aphresis nurses said they got a really good amount from me considering I am so tiny. So I guess thats good.
I have NO IDEA how I am going to start Enhertu on the 30th with the way I feel right now :(
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