- May 7, 2021 at 11:29 am
Its been a while since I’ve posted, I decided to start a new thread for this one, because of the (hopefully) new turn my treatment is taking. I’ve been on nivo/braftovi & mektovi since September 2020. My last scans in February showed mostly stable disease with a couple spots of very small growth.
I had new scans on Tuesday and my follow up on Thursday. This is what the scans turned up:
Brain: No evidence of intracranial metastatic disease.
Abdomen: Decreased size of a right hepatic hypodense lesion, otherwise stable exam.
Chest: New prevascular lymph nodes, increasing left subpectoral and left axillary lymph nodes are concerning for increase in tumor burden. Unchanged small pulmonary nodules.
Neck: Overall increased lymphadenopathy, with some mixed changes in the form of mild decrease in level 1 lymph nodes.
Based on this, and my desire to be aggressive with treatment, we’re now looking at trials.
Dr Sznol is of the opinion that the top trial he would recommend for me, at Yale, would be TIL. However, he wants me to check in with Dr Postow at MSK and with Dr Sullivan at Mass General to see if they have something different that would be more interesting or perhaps less intense than TIL. There was also a question over whether or not they could actually get me a spot in their TIL trial.
He wants me to continue with the targeted therapy for now, as he thinks that is helping to slow the growth. No nivo this time around, because of the wait time for lots of trials between ending anti PD-1 and starting a trial, he didn’t want there to be any delay.
So, I’m checking in with them today (already got the wheels in motion with MSK) to see what else might be out there. This seems to be the right time to do this – melanoma isn’t in any ‘bad’ places yet.
Hi Tim, well you have the dream team of oncologists looking at your situation. I think TIL’s is a great option, is it in house with Dr. Sznol or with Lifileucels LN-144 trial from Iovance Biotherapeutics? I know you have probably gotten information on the TIL’s process but I thought I would add in a link to an ASCO article with some results from LN-144. https://meetinglibrary.asco.org/record/186915/abstract
- May 7, 2021 at 2:32 pm
Thanks Ed! I believe it would be Iovance, but I’ll get more info. The nurse that deals with all the trials there had a laundry list of things she was looking into, that was one of them. He mentioned that if I went in that direction, Dr Harriet Kluger would be getting involved with my care as well.
- May 7, 2021 at 4:14 pm
So after a day of being on the phone, I have an appointment on Monday at 5 to see Dr Ryan Sullivan and Tuesday morning at 11am I have an appointment to see Dr Postow. I believe all the releases are in order and I have my scans on CD now – it blows my mind that the images themselves can’t be transmitted digitally, that the industry standard is burning them onto CDs. Sheesh.
Its totally overwhelming to be shoehorning these appointments in Boston and Manhattan into two days, but I’m glad that its being done quickly. Suddenly, time is of the essence and I’ll be happy to know what direction I’m going in by mid week and not wasting time.
Tim, this is the reason that I was so pleased to be treated by Dr. Sznol at Smilow. They are completely dedicated to you at this clinic. Many community hospitals will keep you in their care, when they know that your life expectancy would greatly improve at a melanoma treatment center. Sometimes it’s all about the revenue stream. An ovation of gratitude to Dr. Sznol for putting you in the best possible treatment center. Tim, wishing you good fortune in the days ahead.
- May 8, 2021 at 10:24 am
- May 8, 2021 at 12:50 pm
I’m still following your story and excited to hear about your appointments and the trial. FYI – Braktovi/Mektovi just didn’t work for me – the side effects were too much so we’ve moved on to Tafinlar/Mekinist (I am not on the triplet because I stopped responding to nivo in December). They are easing me into it with just one Tafinlar twice/day for now and go from there. The body aches are for real but I seem to be tolerating these better so far. At least I’m not vomiting & running a constant fever/body rash – yet. Fingers crossed!
Best of luck to you! Keep us posted!
ThreefittyParticipantThank you TimCT for sharing this very timely post.
- May 8, 2021 at 8:43 pm
And damn, Johnjk04, I thought I was the only person who carried those kind of dark thoughts around, good to know you!
I have a great top guy I trust, but he doesn’t communicate well (old school) so his very defendable conservative advice can make me queasy with “Fear of missing out”. This thread shows why. It’s a small eligibility window to make at a bad time in the process.
Think I may ask who my “CT research nurse” on the team is.
So do please update. Your experience has value to lots of us, good luck on your choices and options.
Couple more pieces of info from this morning.
- May 10, 2021 at 12:08 pm
The TIL trial at Smilow is indeed through Iovance, and they were able to get me a spot. Tentative date for surgery to harvest tissue is 6/3, and between now and then I’ll need to sign the consent, have an EKG, more bloodwork and I think another set of scans, unless they can do some wheeling and dealing. Scans need to be within 28 days of the surgery, apparently, so my scans from the 4th probably won’t be recent enough.
I let her know what was going on with MGH and MSK. She said that if I decide to go with something there, we can just cancel my spot here, no harm no foul. She was also very pleased to hear about how quickly both places were getting me in to be seen.
Jenn, I’m sorry you had such a bad reaction to the Braftovi & Mektovi. From what I understand, the standard dosing is so many pills so that they can reduce the dose if necessary, or fine tune it. I’m starting to deal with more side effects now than when I started (the nausea has started affecting my appetite) so I definitely know where you’re coming from. Hopefully they can find the right combo/dosage for you that can be tolerated AND effective.
John, you’re absolutely right. I may very well end up doing TILs at Smilow after seeing what MGH and MSK have to offer – Dr Sznol is good at mentioning things that should be blatantly obvious but that are harder to see through the fog of stress & grief. In regards to the TILs, he said that he’s treating someone who didn’t have a complete response to it, but that it made his disease more or less stable, which gave him lots more time to try something else. I really think that is the way we’ll end up ‘beating’ melanoma. There doesn’t seem to be a one size fits all treatment, but perhaps the 30% durable response rate for ipi/nivo is OK, because there are so many other options to try, after that. There has to be some combination that works, right?
- May 12, 2021 at 12:20 pm
So it was a whirlwind couple of days. I wouldn’t hesitate to tell anyone to be treated by Dr Sullivan or Dr Postow.
Both recommended doing TILs. Dr Sullivan said that if it was a horse race, TILs would be body lengths ahead of the other current options. Dr Postow said that he didn’t want to sugarcoat how difficult the treatment could be, but he thought I would be fine. They both mentioned that they thought this was going to be approved by the FDA in the very near future and would become a standard of care option.
Dr Postow also had a couple other tidbits that I found interesting. He was aware of only 25 or 26 spots currently open in the US, and that there were zero just a few months ago. And MSK has only treated two patients with this therapy, one of which is having what he believes to be a durable response. I guess I would have assumed that such a big cancer center would have treated more than that.
So, TILs it is, after I went 3 for 3 with opinions. I have an appointment tomorrow with Dr Sznol and the research team to go over specifics and sign paperwork, and then a tentative date of 6/3 to harvest tumor tissue. Then its off to the lab to grow some TILs.
I’m both scared and excited. Glad to have another potentially curative option available to try right here in my backyard.
Good luck Tim – your scans didnt seem too bad to me (and my previous doc might have set on this), but clearly you want to be on top of this, pro-active, so great job. It was only by being pro-active and spicing up my treatment that I managed to turn things around (so far, I dont want to jinx this).
- May 13, 2021 at 9:00 pm
well done and I know you have a great team too
- May 13, 2021 at 10:29 pm
Tim, I found the above study (in my previous post) – which is an update of what Ed posted earlier I think – on your treatment (I think its the same one). Bernard Fox posted it on twitter and says the treatment looks promising.
- May 13, 2021 at 10:31 pm
Hope this helps
Thanks for the kind words everyone!
- May 14, 2021 at 1:01 pm
I can’t say that what I’m feeling is excitement, especially after going over exactly how miserable its going to get for me for a little bit. But I want to keep pushing and moving forward, and I don’t want to lose any gains I may have made in the tumor burden department. I think that while the scans weren’t terrible, they did show that the targeted therapy has most likely lost its efficacy and we’re now moving in the wrong direction again. For as quickly as the consults and appointments have gone, I realistically won’t be admitted until the end of June, so no TILs until the beginning of July, which seems like a really long time to be letting the disease continue to grow.
As for yesterday’s appointment – I met with the research nurse to sign the consent (so now its official), one last atta boy from Dr Sznol, and a meeting with the surgical assistant, who let me know that they’d be making an incision starting behind my ear, in a hockey stick shape, down to my shoulder, and removing all the disease they can while they have me open. Part of me is terrified by the thought of that size of an incision, but I’m also a bit comforted by the fact that they’ll be removing tissue that may be starting to cause a problem in a month, if it continues to grow. So I’m trying not to worry too much about the timeline. Also, I need more bloodwork, an EKG, an echo, more scans and to have a port installed between now and then anyway.
- May 15, 2021 at 6:59 pm
I am so glad you have chosen a path and even though it looks challenging, it seems to be the correct one for you. Although I do not know anyone who has undergone this treatment, a friend has had her melanoma tumor harvested just in case she needed TIL treatment later on. If I remember correctly, she had to wait 3-4 weeks for the lab to grow her tumor cells and see if it would be successful. This would explain why even though you will have your surgery to harvest tumor tissue on 6/3 but you will not be admitted until the beginning of July. I also think this will give you time to heal from the surgery. As for the port, it is a simple procedure and I have had it installed the day before my infusion. Minimal incision and practically no pain and it has definitely been a godsend in every possible sense. My surgeon informed me that he had a patient who had his for 17 years. I have had mine since November 2018.
I wish you all the very best and we are all rooting for you every step of the way!
Got most of my TIL prep done yesterday.
- May 28, 2021 at 10:06 am
Bloodwork (8 tubes and a million separate tests), urine culture and an EKG, followed by the echo. A little later in the day I had another MRI of the brain and CT of the abdomen, chest and neck.
Next up is a meeting with the surgeon on June 1 so he can tell me exactly how gigantic the incision for a modified radical neck dissection is going to be…
- May 28, 2021 at 6:45 pm
Keep the faith!! We’re all cheering you on! I’m scheduled for a wide excision and a complete lymphadenectomy on June 11th after trial and error with targeted therapy. Thankfully, my scans were clear so I’m not dealing with tumor burden. Please keep updating us! We’re all rooting for your success! Are you still on Braktovi/Mektovi? If so let me know…
Thanks Jenn! Doing my best to stay positive. I hope the TILs at the very least are a bridge to the next latest and greatest thing that will do the trick.
- June 1, 2021 at 12:50 pm
I have to admit to being terrified beyond the capacity for rational thought, as Egon said. The scans from the other day showing new growth in my liver over just the course of 3 weeks makes me wonder where I’ll be at by the end of the month when I get admitted to start the trial. Will I make it? I hate those thoughts, but they’re hard to push out of my mind. The debulking surgery will go a long way towards alleviating pain I’ve started having in my neck and shoulder, but it won’t make a difference for anything growing elsewhere.
I am indeed still on the targeted meds. Dr Sznol thinks that they may still be having an effect as far as slowing progression. I guess that’s not something you can really prove one way or the other, but no real reason to stop taking them now, if its only for another 4 weeks.
So if you have no tumor burden, are they removing the lymph nodes pre-emptively?
So I met with the surgeon yesterday to go over details and sign the surgery consent.
- June 2, 2021 at 10:56 am
It’ll be the first surgery of the day on the 9th. He said it may take up to 6 hours, and the folks from the trial will be there to collect tissue around noon- probably while I’m still on the table!
The goal of the surgery is twofold – to remove as much tumor tissue as they can to make the TILs from, as well as to make me more comfortable and give me a little more rope to work with until I get admitted. A typical radical neck dissection takes all the tissue, wholesale, from that side of your neck. Including things like the facial nerve, all the lymph nodes, jugular vein, etc. My surgery will be a modified radial neck dissection, meaning that he’s concentrating on tumor tissue and will try to preserve those structures as best he can. As in, stripping the tumor away from the nerve, instead of removing the tumor AND nerve. We agreed to the plan and I’m on the schedule.
Part of me wants to message them and plead with them to cut me open and cut out everything last thing they can. Neck, armpit, chest, everything. But he didn’t want to do anything counter intuitive – I need to be at least semi-healed before I can get admitted and get the TILs going, and if making me more comfortable is one of the goals, making 17 incisions runs against that. So we’ll concentrate on the neck and keep our fingers crossed that my shiny new TILs will do their job and I won’t need to have anything else cut out.
Thanks guys! Today is my last day for the Braftovi/Mektovi, so I’m hoping that while I’m not in a melanoma free fall, the side effects will dissipate somewhat and I can go into surgery feeling a little better. I’m already worried about not being able to eat after midnight and only clear liquids up to two hours before my arrival time. That’ll be prime puking time if I don’t get something into my stomach. Zofran, take me away!
- June 4, 2021 at 10:00 am
- June 4, 2021 at 10:39 am
Wishing you the best of luck next week and hoping all goes well! I’m glad you get a short break from the Braf/Mek before surgery so you can hopefully feel a bit better & stronger going in. Thank goodness for Zofran; it saved my bacon a few times when I was on Braf/Mek!
They are taking me off the targeted meds too before my surgery, even though mine is not nearly as invasive/serious as yours and I’m not having as bad of side effects on Tafinlar/Mekinist (guessing it is common practice). The decision was made to remove my lymph nodes & what is left of the OG tumor due to my stopped response to immunotherapy and I have no current metastases…the surgical oncologist said it will give them more data to work with going forward in my treatment.
I will be thinking of you and sending lots of positive energy your way! Keep your chin up & give ’em hell!!
- June 13, 2021 at 2:54 pm
Well, I made it through surgery. They tell me I was on the table for about 8 hours while they removed two big masses and shipped them off. Reportedly, they were 80% viable for expansion. So thats good news, and the first check box has been filled.
I spent the night in the hospital and was released Thursday morning. Recovering at home since. There is a lot of numbness on in my neck and shoulder because of how the nerve on that side was yanked and stretched during the debunking, but that should slowly fade. The pain hasn’t been terrible, maybe because of the numbness, and can be controlled with tylenol. I’ve got two drains still in, and their output has been steadily decreasing. So everything is going along as it should. I have some swelling around my throat which is unnerving, but I can still breathe and eat fine.
I have a follow up with the surgeon on Tuesday, when they should be removing at least one of the drains. I had CT scans this afternoon, and on Wednesday I had an appointment with Dr Kluger, who does a lot of work with TILs at Yale. Port install has been scheduled for the 23rd. Now if only my liver will hold out a few more weeks…
- June 14, 2021 at 7:05 am
I’m so glad you made it through this surgery and I’m wishing you the best for the upcoming procedure. You are a pioneer and I thank you for your braveness in pursuing the TILs and the study. It is people like you who will help so many others down the road because of knowledge obtained though study outcomes.
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