Are you currently (or have you been) in a Clinical Trial?
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Moth: I am a big proponent of radiation...just my opinion... any chance you can be assured of getting it outside of a trial? If not, a 50/50 chance is better than none.
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Lumpie, inside the trial, it's a 2:1 randomization so 66.66% chance of getting SBRT/SABR (can't figure out if there's a difference between these two terms or if they're synonyms). The control arm can get something called palliative radiation for pain and symptom control. I might qualify for it as I eventually will be back to nonstop coughing - which is how it was when I presented at diagnosis. Then it shrank, I stopped coughing, now it's back & I'm just starting to cough. So it seems like I could get some sort of radiation if they agree the symptoms are problematic?
All questions on my list for Nov 10
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Moth, for many days I have had this question on my mind: Can you access SBRT outside a trial???
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SP, as I understand it, nope. I think it's not standard of care under our current protocols to use it. SO I think it's either this or driving to Seattle with a big cheque.
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Lumpie,
I saw in another post that you were considering the AVIATOR trial. Did you enroll? That is my oncologist’s recommendation for next line treatment and she is currently working through my eligibility with a hope to start this month.
I would love to learn more from someone who is in the trial.
Thank you.
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Ok, moth. I think I might proceed with the trial application, but at the same time set up an appointment in Seattle. At least there is a cap on the cost there. It is not like an expensive drug with a cost that goes on indefinitely. Or maybe your onc can justify the SBRT as palliative; if so, would you receive the same treatment? My personal stance on trials for myself is that I am not so altruistic as to stick with a trial if it is not my best available treatment option. It has to be a win-win for both me and the sponsor. So if I got randomized to the unwanted arm, I would quit the trial and pursue the treatment elsewhere, and leave the trial to people who are undecided and are fine with letting the randomization process choose for them, or who don’t have another good option anyway. I hope this is not anathema. I do believe in clinical trials but I feel my first duty is to myself and my loved ones.
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Bluefrog76: Yes, I did the AVIATOR trial, too.
Cons: It didn't work for me (tumor did not shrink... actually got bigger); the weekly (3 out of 4 weeks) infusion schedule is do-able but that is a lot of time at the doc's. (I do know at least one person who had success on this trial for a while.)
Pro: the doc and staff were great and I made some new contacts.
Neutral: I kinda felt like the med made me feel sorta crappy... like fatigue vs anything specific.... but probably not worse than most... so...
I would consider it if it is an option for you. Let me know if you have questions I can help with.
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Nicole- that paper, and another one using a different drug for the same purpose that was in the same issue, are trying to get rid of the immunosuppressive environment in cold tumors- they have a new approach but it will be first tested on cancers that do respond to immunotherapy, to see if it gives a much more robust response, and if so they eventually work their way to breast cancer- for sure it will be tested first for TNBC, but this is something they are hoping will make immunotherapy work for all cancers
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Thanks for clearing that up for me Cureious...you are great!
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Not exactly clinical trial related, but I just got a notice that Casting for Recovery has opened their application window for retreats. I wen to one and really enjoyed it. Sharing FYI. Here's the link:
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MOTH
I am not sure why you can’t go ahead and get SBRT to the lung. My RO was all for it.
(I believe SABR is another name for the same thing) According to the article, https://ascopubs.org/doi/10.1200/JCO.20.00818
the trial has already proven that SBRT is better at “surgically” treating the tumor vs localized radiation for palliative care. The whole point was to give it to oligometastatic patients in my understanding.
The SBRT I experienced was high dose 4 treatments in 5 days and I was done. My only issue was fatigue after day 3 and it resolved by the next week. I had 1 tumor in my lung that lit up on the pet scan, the liver tumors were treated with y-90 and did not light up. My RO said if later on I got another larger lung met (and the liver looks stable) she would threat it with SBRT if it was in a treatable area like the first one
Hoping you can get the right treatment. Just sharing my experience.
Dee
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Moth: I, too, was going to ask about the barrier to SRS. It is your MO or your insurance? Perhaps you need to present whoever it is with evidence/recent articles? Latest studies are very encouraging.
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I will find out on Nov 10 if SBRT is avail to me outside of trial or not. I believe they do it for some oligometastatic patients but I think I have too many mets (+ 2 visceral sites) to qualify for that.
I'm in Canada and our health care is covered but that means that everything has to be approved by the health authorities as standard of care. (this is why I needed a trial or compassionate access for the immunotherapy. Atezolizumab got federal approval from Health Canada for treatment of metastatic tn breast cancer but Roche withdrew its request for a review of efficacy & cost benefit for metastatic tnbc so no provinces fund it for breast ca. Gotta say that shook me a bit. Why did Roche withdraw its application? They got approval for it for non small cell lung cancer but withdrew the breast ca application....)
We have an independent federal body that reviews applications for use of a therapy & they evaluate whether the new therapy works and is 'worth it' and they make a recommendation about whether a province should fund a treatment.
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Moth: sorry, I had missed the fact that you were in Canada. That does change the equation. I suppose there, the best patiens can do is try to advocate through the system. Radiation is less expensive than drugs (especially at U.S. prices!) so one advantage it has is that it is cost effective. The latest studies are really encouraging. I know that sometimes it can be difficult to modify the system endorsed standard of care. Hoping it will work out for you!
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MOTH
I echo what Lumpie said. Hoping you get more good news with SBRT like Atezolizumab approval for compassionate care.
Dee
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Moth - I think looking into the SBRT is a great idea. I had one small liver met ablated when diagnosed and my liver has remained clear for the past few years. I have a few small lung nodules now. I had them at diagnosis but they were never noticed until a year later when they grew to 4mm. When they compared the 2nd year scan with my original PET scan, they stated the lung nodules had been there all along. Since only my liver met was noticed at first, I begged to be treated as oligometastatic so I could have the liver ablation. I was thrilled to get the ablation and it was a success. I would love to have SBRT on my lung nodules now. My doctors don't want to touch my lung nodules (won't even biopsy!), but if I were to qualify for a SBRT trial, I would sign up for it. I would take the 66.66% chance. Like you, I have 2 visceral sites, but I only have one site currently active. The definition of oligometastatic varies depending on the publication I read. I doubt if I would be considered oligometastatic by most doctors, but I would like to be treated like I am!
. ~Kar0 -
starting week 5 of cdk 2/4/6
CA15-3 went down, yay! It’s been in the normal range for awhile but still going down.
Bloodwork improved this week. Still low WBC and HGB but better than last week.🙌🏻Today was the My “contribution to science “ trial biopsy. Thankfully it went well. All the samples go to Pfizer since I just had a biopsy 4 weeks ago and sent some punches to TEMPUS.
I see the PA each week and only see Dr. Hamilton 1 time a month. She is very focused and does not interact often. It’s interesting-they both sit at a nurse station right next to the patient lounge the whole morning. So I decided to walk up an ask Dr H about my TEMPUS results that just came back. she said only the ESR1 would be the actionable mutation. She was not interested in my questions about the RNA results. I will get my home MO to go over them.
The PA did order an abdominal ultrasound for my flank and midriff pain - Normal. So I guess I will go back to ortho and talk about getting a spinal epidural.
It’s always something with me.I woke up with an oral abscess on my apicoectomy sight yesterday. I had that procedure back in March. Oral surgeon put me on penicillin. I see him tomorrow.
so to summarize- I start a clinical trial and at the same time get diagnosed with migraines, have mysterious severe flank pain and come down with a mouth abscess.They must think they signed up a hot mess patient!!😳
Dee
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Dee - I am so happy to hear that the trial may be working for you. The improved tumor marker and blood work sounds promising. Hopefully everything else will resolve soon. Could the pain in the flank area be referred pain from your last local procedure? After my liver ablation, I had a sharp pain for about 2 months on the other side of my abdominal area. The doctors said it was referred pain from the procedure. I thought they were crazy at first, but it cleared up and I suppose they were correct. It's okay to be a hot mess patient. You've gone through so much lately. We have a good reason to be a hot mess with all that we must go through and our care team should expect it from us. ~Kar
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Whoo-Hoo!! Whoopee!! I'm celebrating the clinial trial for Covid vaccine, over 90% effective! Pfizer (maker of Ibrance) has this one, but the other trials are pretty similarly designed so hopefully we will have a lot of great vaccines! They will apply for emergency use authorization and expect their trial will finish up by the time it gets FDA-approved, given the high numbers of infections. They will ship out 50 million doses in maybe mid-December timeframe (for 25 million patients, each getting two doses). Once local recipients have enough for emergency workers and vulnerable people, the residual will be up for grabs, I know lots of people won't take it but I sure will, I want my life back asap and this virus is nasty!! I wonder if we will be able to get it from our oncologists office?!
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It's promising news but overall I'm not holding my breath. Two doses and it apparently requires -70C storage and delivery - that will not be easy. The logistics of getting large numbers of people vaccinated are challenging. Germany is estimating 7+ months... I suspect that's optimistic and they actually have a good federal response & organization. In other countries, it will be harder and longer...
And apparently already there are arguments over who should get first doses.
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True, good points! Of course it will and should go to most vulnerable populations first, I'm just wondering if that includes cancer patients. Most of these vaccines target the spike protein, so there may be multiple just as effective. I think the NovaVax vaccine does not require dry ice- its purified Covid spike protein, is that right?
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I heard a speaker talk about this recently. Wish I could remember who it was. Pretty sure it was on CSPAN. He said there were already panels convened nationwide to do an ethical triage of the prioritization around vaccination. There seems to be preliminary thought that they will do healthcare workers first, then vulnerable populations, then healthy adults and that healthy children are likely to be last since they seem to be less frequently impacted and less frequent spreaders. There may be sub-stratification within categories. Made sense to me. I know that most if not all states are already developing plans to roll out large scale vaccination programs. I have gotten limited info on planning in our state, so I know plans are in development. Friendliness toward such planning my vary from state to state but I think most public health officials understand that it is important.
PS: The speaker noted that it would take many months to complete such a program and the time would depend on many factors including the rate of production of vaccine.
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This was breaking news on BBC that was playing in the day unit waiting room. The Prime Minister is on tv now honking away about how its "early days" etc and something about a scientific bugle over a distant hill. Frankly I think they wanted the Oxford vaccine to announce first, but *shrug* its Pfizer. Those guys are a juggernaut.
I have read that they are readying GP offices for distribution and that it (which ever one) will first go to medical and care home staff, then those over 80, then down into 70+ and the clinically extremely vulnerable that's anyone on chemo, immunosuppresants, etc. I suspect they will triage this group further now that there is more information than from the spring. And while they ordered across the board, I imagine the Pfizer vaccine would be distributed to those in areas that already have established cold chains + storage + people on the scene all the time like... medical workers in hospitals, and then overlap into the other populations with the more convenient Oxford vaccine when it is ready.
Its exciting though, for sure!
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I follow this Thread, though I am not on a clinical trial and most of the discussion is wwaayy above me.
But... WOOHOO on the Covid vaccine news. I had heard that it will first go to Healthcare workers, then maybe "essential" workers, then the vulnerable. But "vulnerable"????? And we are Stage 4--- we need it, but are we expendable?
We shall see how this pans out.
Funny, so many in the U.S. think it is a "hoax", but they will be in line to get the vaccine.
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SondraF: It's an important point that different countries will probably have different strategies for vaccination and possibly some variations in the order of priority of vaccination. Since we do not have universal access to care in the U.S., we will have to have a different, or at least supplemental, approach to reaching all populations. Mass vaccination stations are envisioned, much like we have mass testing facilities in some places. I don't think that anyone yet knows definitively how the vaccines will be paid for. For those with insurance, I think it is likely to be covered.
The speaker I heard was talking about the likely approach in the U.S, and he thought there would likely be multiple vaccinations (from different companies) available and that it would be somewhat random which one any individual got... whatever brand your location (where you get the vaccination) carries or your health plan covers. He thought that production capacity would be a limiter and that we would need all approved vaccines be produced as quickly as the system could manage. Given the way our system works, none of that surprised me.
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candy-678: "vulnerable populations" is generally the aged and those with health conditions that make them vulnerable. It would definitely include those of us who are Stage 4. I am sure that the details of categories of populations are still being worked out. I really hope that the vaccine is safe, the roll out goes well and that there is good acceptance of the vaccine. I think it will allow us to get on with our work and our lives. I think it is safe to say that the status quo is not working for anybody!
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One really important, positive fact about the vaccines, is that they are eliciting a strong response in older patients. That is something a standard flu vaccine rarely does.
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The deputy medical officer used this analogy in statement tonight that I thought was kinda neat:
It is like a train journey. It is wet and windy and horrible. Two miles off you can see the lights of the train. That is the efficacy data. Then the train needs to approach. That's the safety data. Then, when it stops, the doors need to open. That is the MHRA [Medical and Healthcare products Regulatory Agency]. And, when the doors open, there will be a scramble for seats. They have to go to the right people first.
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I feel stage iv people are “vulnerable” in a couple ways that are not the usually recognized vulnerabilities (like immune compromised), and these vulnerabilities are not going to be in the equation. First, I figure that if we stage iv do get sick with covid and hospital beds are scarce, we will be left out because our lifespan is predicted to be short. Second, if we get very sick from covid, our oncologists in many cases will pause our treatment, and that could lead to progression. Of course everybody wants to be able to go out and live their lives free of covid restrictions. But when your probable life span has been drastically shortened by cancer, even missing out on several months is a big deal. And yet many of us stage iv are the most restricted right now, taking all precautions because we are vulnerable, and missing out on more than those who are not so vulnerable and who are comfortable doIng some socializing, traveling, shopping, eating out, visiting family, getting a haircut, etc. There is really no point to this post other than to say I really hope my “get out of Jail” card (Vaccine) arrives in time for me to enjoy my freedom. I really hope my cancer center will offer it to me the way they offered the flu vaccine. (But then DH will still need it, and I want him to come with me to visit family and eat out and all that stuff.)
(Apologies for going off topic a bit. Hey, my clinical trial is still working great at nine months!)
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my husband is an emergancy room physician and we were just discussing if we can continue to live together. He sees at least 2 people with Covid every shift. Reality is he can’t be in charge of the 4 kids and work. That leaves me to take care of them all by myself. I’m not sure I can do that. Beyond that I am really worried about his health as we know 2 doctors who have died of Covid. Mira a very scary time right now. We really need a vaccine soon. For now we will keep living together snd hope things get better soon.
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