Tom Galli reacted to LexieCat in Moving forward with the Iovance TIL trial
Oh, I will--at least, as I feel up to it. I've been warned that there will probably be several days where I'm completely wiped out. It will be a few weeks before I go in for that part of it. The surgery should only be 2-3 days.
Tom Galli reacted to LexieCat in Moving forward with the Iovance TIL trial
Thought I'd start a new thread to document everything related to the trial.
I had an appointment this morning with Dr. Bauml, my regular oncologist at Penn. We talked about this trial (which is at MD Anderson/Cooper), and his only lingering concern was whether I was OK with the chemo to deplete the lymphocytes--far stronger/more intense than the chemo I've had so far. I noted I'd be in the hospital for that, so at least it wasn't like I'd be having to take care of other responsibilities. I also said, I assume that if I weren't doing a trial at this point, the next line of therapy would, itself, involve another, probably more intense line of chemo? He agreed. He said, if you're up for it, I think you should go for it. He thinks it's a really interesting study, though he personally thinks CAR-T cell research is more promising overall. As for the other trial at Penn, he felt that if I was sure I wanted to do the one at Cooper I should just focus on that for now. He said if something goes wrong where I can't continue with that trial for some reason I can drop him a line and he'd work on getting me set up with another trial.
He also told me he had some "difficult" news to share--he's leaving in July to take a non-clinical, research position with Janssen Pharmaceuticals. His passion is really research and this is within driving distance for him. So I can't continue to be treated by him in any event after July. And as long as the trial treatment is working, I really won't need much in the way of treatment, other than scans and my Zometa infusions once every three months.
I have an appointment on Tuesday with my favorite surgeon to start the process for the surgery. Cooper was unable to access the actual images from my most recent scans, so while I was seeing Dr. Bauml, I picked up the disc, which I then dropped off to the research nurse at Cooper so my surgeon can have a look before my appointment next week.
As with most things, it's making that initial decision that's tough. Now that I've decided, I feel committed and kind of excited about the whole thing.
Tom Galli reacted to Survivor in Muscle Cramps After Lung Surgery
Yes when skin an muscle and nerves cut and reattached the signals are confused and also muscles triggered to contract because signals and messages are connected to different areas They get connected to the wrong nerves and signals get crossed. Sometimes it fixes itself sometimes not
Tom Galli reacted to Deb W in Fatigue after 4th triplet
Hi Jen - Ooooh...I'm sorry that's happening to you. I understand. I remember it very clearly. It's sort of a slow climb to a normal hemoglobin, but you will get there. This is your last dose of the triplet then, right? Red meat also helps (unless you're a vegetarian of course). Hydration, rest. I didn't take anything for it, but nothing was offered to me or I would have gladly taken it!
Tom Galli reacted to Jennedy in Fatigue after 4th triplet
I got my 4th round of the triplet last Friday. This one really kicked my butt! They gave me a reduced dose because I am anemic... hematocrit(26.9), hemoglobin (8.8) , platelets (117), RBC (2.82). I am keeping hydrated, nibbling throughout the day and trying to make sure I get protein.
Any ideas? Even putting my dirty dish in the dishwasher is too much.
Tom Galli reacted to BridgetO in Cataract surgery tomorrow!
Surgery on right eye tomorrow, on left eye in two weeks. Good vibes, well wishes, prayers, positive thoughts are all welcome. This should be a piece of cake compared to my VATS lobectomy--at least there's no possiblity coming home with a chest tube. And the lobectomy was a piece of cake compared to my other (non-lung) cancer surgery. I'm looking forward to an excuse to lounge around, not that I don't lounge around enyway.
Tom Galli reacted to LexieCat in Clinical trial decisions
So I met today with the doc running the study at Cooper. I got every question of concern answered to my satisfaction, I signed the consent form, and unless something unforeseen comes up, I plan to participate.
Here's a diagram of how this trial works: https://www.iovance.com/wp-content/uploads/AACR_2021_ePoster_IOV-LUN-202_TiP.pdf
The initial surgery to harvest the sample of my tumor would be a VATS wedge resection--and the surgeon would be my favorite surgeon! I'd be in 2-3 days (and hopefully without the crepitus that got me last time). After that, they send the sample off to have a customized immunotherapy manufactured--that takes about 3 weeks.
About 5 days before the immunotherapy drug is ready to be infused, I would be admitted to the hospital for the chemo to deplete my lymphocytes. That takes about 5 days. Then the custom immunotherapy is infused over the course of a couple of days, and then it's topped off with infusions of IL-2, which apparently gets everything revved up. The doc says I wouldn't be discharged until my immune system was back to normal (albeit new and improved).
One of the biggest upsides to this is that IF it works, that's it, in terms of treatment. No more chemo or other drugs, at least until something changes.
To me, it seems worth the shot.
I'm seeing my own oncologist tomorrow morning for evaluation for the other (tumor-injection) trial, just in case something goes wrong and I can't complete this one. I'll let him know what I found out, and the research nurse at Cooper used to work with him at Penn. She told me to have him call her while I'm there if he has any questions about this trial.
I think it's sounds super-exciting.
Tom Galli reacted to LexieCat in Unpleasantly Surprised...
Well, I had my implants done by a world-class implant dentist--he trains others all over the world and is a professor at U. Penn Dental School. My implants cost the equivalent of two new cars--it was $75,000. I took out a personal loan, put all the payments on my travel rewards card (accruing enough points to pay for my RT airfare to Vietnam for vacation) and took a medical deduction on my taxes. That offset a bit of the financial pain.
That said, you can get them for less money but I'd advise researching the dentist carefully.
Mine were done in two procedures--first lower then upper. All teeth extracted, implants placed same day and temporary teeth (which weren't dazzling but they served the purpose) the same day. You can chew and eat right away. No BS. The lower and upper were a month/6 weeks or so apart.
The implants continue to heal for a few months. During that time, you would be fitted for the permanent teeth--make sure color, shape, etc. are all good. Final teeth were probably about 4-5 months from the initial procedure. But NEVER without teeth. And the cost was all-inclusive--all the visits, creating the new teeth, etc.
The only serious pain was with the initial extractions. I looked like I'd gone a few rounds in the ring for a few days after each set of extractions. But I healed relatively quickly and the pain/bruising resolved in a week or so.
I couldn't be happier with mine--seriously, one of the best things I ever did for myself.
ETA: You will be able to eat right away, but not everything. They told me I couldn't eat anything that went "crunch" until it was completely healed (a few months). But certainly not restricted to mushy/liquid diet. I could eat meat, sandwiches, etc, but not apples, nuts, carrots, etc.
Tom Galli reacted to LexieCat in A Phase 2 Multicenter Study of Autologous Tumor Infiltrating Lymphocytes (LN 145) in Patients with Metastatic Non-Small-Cell Lung Cancer
I was trying to remember where I originally saw this.
I just signed the consent form for this trial--I have an appointment with the surgeon next week (full details in the "Updates" forum, under "Clinical Trial Decisions"). I'm really stoked about participating in this--I honestly think this kind of personalized immunotherapy is where cancer treatment is headed.
Thanks, Katie/Lungevity--I probably would not otherwise have known about this trial (which is being conducted at the hospital where I was originally diagnosed and had my lobectomy).
Tom Galli reacted to Steff in Clinical trial decisions
LexiCat - I'm just getting caught up with your situation. It sounds like your immune system and blood cells (red, white, platelets) may be affected by this proposed treatment??? If so, feel free to reach out to me, my mom's leukemia treatment resulted in neutropenia with all 3 doses. She pretty much had no immune system for 4 months and is now in the same boat due to relapse. There are simple precautions to take that all leukemia patients and their caregivers are given. If you end up going that route, I can give you some information based on my mom's treatment.
Tom Galli reacted to ChiMama in Scans coming up!
Thanks! I don't usually have much scanxiety, I've been getting so many the past 5 years (chest abdomen pelvis, thyroid nodule ultrasound, clavicular lymph nodes, breast scans ultrasounds and surgical biopsies, etc) that I just try to stay focused on the science and stay as positive as I can rather than the emotion. I was fully expecting the lung biopsy to come out as benign and be able to reduce the frequency of scans. 😳
The past year it's anxiety about the process more than the result - I'm already a bit of a germophobe and the place I've been getting my scans all these years had horrible covid protocols (small jam-packed waiting room, bad ventilation, no distancing) so I didn't want to go back there.
Judy, I got my 2nd pfizer dose 3 weeks ago which is another reason i pushed the scans out to the end of the month. If there's not a place on the form for it I will write it in! And hopefully it won't affect it.
Lexie - yes I just reached my 5 year "all clear" on the the colon scans and am now on the full rotation for the lung scans. I'm feeling better about going in now, and my oncologist is super proactive, he won't let me put them off for long!
Tom Galli reacted to Jesse L. in Scans coming up!
Oh wow...you have had and still have a lot going on. I'll tell you this though, you're still staying on top of everything and as such you're catching things early and winning out. Keep up the good work at being your own best advocate. At some point, you'll be the champ!! I have every faith.
I myself went from a 1a to a 3a after they found two affected lymph nodes while they were removing my RLL back on 2/25. Well now because of that "stage upgrade", I am now in the midst of adjuvant chemotherapy and for sure it's no picnic; doable but no fun at all. As much as I would like to believe that I will never be faced with cancer again, the chances of that happening are not in my favor. But like you I will forever now be on it like a duck on a june bug if it ever shows up again.
One thing I would recommend is to try and relax...scansxiety is a real thing and it can be bad. What will be will be and worrying dosen't help. If anything shows up, you'll just deal. After all, what are the choices...none!!
Tom Galli reacted to ChiMama in Scans coming up!
My next set of scans are coming up on Monday. I skipped my 3 months post-surgery scans that were supposed to be in January because I didn't feel safe in the COVID surge that was happening here and I just couldn't mentally deal with scans at that point. I get Chest/Abdomen/Pelvis, plus a mammogram and ultrasound of the breast where I had biopsies last year.
So... tomorrow is the 5 year anniversary of the colonoscopy that revealed I had colon cancer, which started this whole ball rolling. The first news I heard on the way home that day was that Prince had died. What a day. 💜😢💜
The first CT I had after the dx spotted a 9mm upper left nodule. I found the Colon Talk forum early on in the journey, and learned about how people handled the surgeries, the recovery, the walking, the supplements, the success stories, the research, and what to bring to the hospital. In that forum, there's a subgroup where people talk about what's happening with their lung nodules - because one of the places colon cancer metastasizes to is the lungs, so it's an area of concern and watchfulness when "lung things" are discovered. Four years later, when my lung nodule had grown to 1.1cm and the biopsy came out as non-small cell adenocarcinoma, I learned about this board from them too.
The good news in all this is that my colon cancer was stage 1, they got it all, and because of the scans I was getting in follow-up, the lung cancer was revealed early enough to also be completely removed and stage 1a, it was primary lung cancer and not a metastasizing from the CC which is a very good thing, and I am pronounced by the surgeon to be "cured."
I do have another small 4mm nodule in the right middle lobe, and as we know, it could be just a random "lung thing" of no concern. Fingers crossed!
I also see my oncologist and pulmonologist next week. And, lucky me, on Friday of next week, I'm having surgery on my nose to remove a spot of squamous cell skin cancer. It's gonna be a busy week! 😎
Tom Galli reacted to LexieCat in Sclc extensive
Hi there, and welcome! I'm sorry you've got so much going on right now.
I don't know much about cardiac issues--even as they relate to lung cancer. But somebody here may have experience that will turn out to be helpful.
If you've been lurking awhile, maybe you know about our SCLC forum, which is here: https://forums.lungevity.org/forum/5-sclc-group/. You are certainly welcome to post anywhere on the forums, but you might find more folks familiar with your treatments there.
Hope the docs can get you back on track.
Tom Galli reacted to Trailwalker in Sclc extensive
Hi all. I have been lurking since February and decided it was time to introduce myself. I am 62 and was diagnosed in February with multiple masses in right lung and liver. Also in lymph nodes. I tried to get in to see PCP in November due to increasing SOB, coughing and wheezing. But because of covid it took until January to be seen. x-ray showed mass in lung. Started treatment( etoposide,tecentriq,and carboplatin) March 15th. Was supposed to be 3 days but ended up in hospital with heart failure after 2nd treatment. Turns out the SOB, wheezing and coughing were not a result of the cancer but rather heart failure. I had never had heart issues before and in fact was very active hiking and trail walking with my dogs at least 15 miles a week. Although the distance was getting shorter and shorter since September when coughing and breathing issues first started. Turns out the echocardiogram the pulmonologist ordered in February showed I had an EF of 15% (normal is 60%). Unfortunately Pulmonologist missed it and despite repeated complaints about worsening breathing issues said it was caused by cancer and to bring it up with my oncologist who said that pulmonologist needed to address it. At that point I just gave up, I was so tired and weak. Luckily my daughter insisted I go to ER that day or I probably would have died that day. Needless to say I now have a new pulmonologist. The chemo caused me to retain so much fluids my heart couldn't handle it anymore. Once they started meds to reduce fluids and treat the heart I could breath better than I had in months. Coughing and wheezing went away and other than being very weak and fatigued I felt like a new person and like maybe I had a chance to fight the cancer. So now until the heart issues are settled doing just 2 days of treatment every 21 days to keep fluid retention down. Unfortunately saw my cardiologist yesterday. The news was not good. Basically it comes down to a race to see what will get me first, the cancer or heart failure. Both limit the treatment that can be used for the other condition. So plan for now is to keep trying different meds for heart till we find something that will stabalize it without causing kidney damage. Trying not to get too discouraged till I talk to oncologist Friday to get his opinion on it all. I am hoping to hear from someone else who is dealing with both cancer and Heart failure. Any information on how you dealt with it and what to expect would be greatly appreciated. Thank you!
Tom Galli reacted to ChiMama in Wedge resection question
Hi Cin - I'll add another voice to your thread here. 😊 I had a RATS (Robotic VATS) upper left lobectomy last summer. They tell you not to drive for 2 or 3 weeks (depending on who is giving the instructions) so I had family pick me up from the hospital, and take me places when I needed to go for appointments or whatever. Other than that I recovered at home by myself. They also tell you not to lift more than 5/10 pounds or even vacuum, which gave me incentive to get everything done before I went to the hospital.
I also bought snacks, pre-made meals, protein drinks, bottled juices, and a bunch of frozen fruit & veggies so I'd have a selection ready. I put all the things I thought I might need to use on top of the counters instead of in the cabinets, in anticipation of not being comfortable reaching or pulling some of the heavier things out. As it turned out, getting all but the heaviest things out of the cabinets wasn't very difficult after the first couple of days. I also had my dog stay with my mother for 3 weeks to avoid the temptation of lifting her or her jumping on my chest which she does regularly. That was hard because she's such an emotional comfort to me!
I got the wedge pillow too which helped. I had an unusual experience in that trying to get up from a reclined position caused extreme pain no matter how I tried to do it. The pain was mostly in the wounds where the drainage tubes were, not the surgical incisions. So I got a barcalounger and slept in it so I could just push a button and be upright, then use my hands to push myself up without involving any of the torso muscles.
Lou posted some tips that are really helpful, you may have already seen it but here is a link: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/. One other thing for the hospital is to bring an extension cord to plug in your phone. Some hospital beds these days have built-in electrical and even USB but the hospitals near me don't, and the outlets are always behind and out of reach of the bed. And of course, do your walking and breathing exercises.
Will keep you in positive thoughts!
Tom Galli reacted to Cin in Wedge resection question
Lexie, I hope to retire at 65 (I'll be 62 in June), sell my condo, buy a 24-foot RV, and travel full time. There are so many National forests, parks, and land owned by the BLM (Bureau of Land Management) you can stay for free (I will need solar for that). This might make me speed up .y plans, but on the other hand I need a good medical plan. I currently work at MIT and have BCBS which is hard to beat.
Thanks for responding, you seem like a wonderful person.