Judy M. Posted August 1, 2018 Share Posted August 1, 2018 Louisa I just had trouble with the web site again recently. I have 'remember me' on it, but occasionally I'll still have to sign in. EVERY SINGLE Time I go through a few days of frustration before I remember I put a period after the M when I signed up, so I guess what I actually have is a problem with the web site user. Lol. Sure that isn't the case with you. Just find it a good joke on myself. Never claimed to have techie smarts. Judy M. Link to comment Share on other sites More sharing options...
LexieCat Posted August 1, 2018 Share Posted August 1, 2018 LOL, yup, Judy, I noticed that about you the other day when I sent you a p.m. I typed "Judy M" and found there were two--I had to check to be sure which Judy you were. Happily for me, my periods are well behind me. #TooMuchInformation Link to comment Share on other sites More sharing options...
Judy M. Posted August 1, 2018 Share Posted August 1, 2018 Like I said.... the reason I have to just tell new members the various things available on Lungevity and wait for you to give them a link. Also the reason Tom had to send 150 messages to help me find the forums. Judy M. Link to comment Share on other sites More sharing options...
LouiseB Posted November 16, 2019 Author Share Posted November 16, 2019 Aloha all, Yup, I'm back! :( The latter part of last year and most of this passed relatively uneventfully. Steve recovered well from the chemo, regained his strength, got back to his regular golf and golf buddies. We had a fabulous week's cruise in Alaska end-April, celebrated a year out from surgery early May. Scans got pushed from 3 months to 6 months. You know the drill. Ticking along nicely...last year fading into the past as just a memory and a dodged bullet...until... September's PET showed some small dark marks that our oncologist felt needed a double-check. She didn't seem overly concerned, at least not in front of us, but she ordered a more detailed CT scan which showed that same kind of cloudiness that the original adenocarcinoma displayed last year. Back to the pulmonologist, CT needle biopsy, cancer recurrence confirmed. At this point, we were hopeful it was still contained in what remains of his right lung, and Steve optimistically stated: OK, another cut-it-out-and-throw-it-away surgery, some chemo again and I'm good to go, right? Not so fast, my love!! Another PET scan and brain MRI in early November to check everywhere. Nothing in brain, nothing in lymph nodes, thankfully, but dammit it has now spread to the left lung, so further surgery is not an option. The report also showed how aggressively the nodules had grown between the September and November scans. Our follow-up meeting with the oncologist was an utter shock. She talked in terms of average survival expectancy of two years, though she has a patient 6 years out and doing well. Two years! That hit us like a ton of bricks! I remember what's been said here about taking statistics with a pinch of salt, and every year survival rates improve, and I know that Steve is a lot healthier and stronger than many facing this, so of course I'm positive and optimistic and determined and...and... but try as I might, that number TWO keeps popping into my head. My brain is yelling: please start treatment like yesterday! Please get going before it invades his lymph nodes and gallops all over his body! He doesn't have any markers that would make him a candidate for immunotherapy drugs such as Keytruda/Opdivo. There are no trials that are suitable. So, the only next step is more chemo, and to hope to keep the cancer under control. This time six 3-week cycles of Carboplatin/Alimta (last time was four cycles of Cisplatin/Alimta). However, the six cycles will also be followed by an indefinite maintenance course of Alimta. Of course, before any of that can happen, he had to get started on at least a week of folic acid, and get his B12 shot. Plan is for him to have a port fitted 11/26 and first treatment 11/27. Oh, jeez, the waiting! This time around it all feels so much worse. Part of me feels like, OK we've done this before, we can do it again, and yet this time it's for the long haul, with the long-term concern that his body might eventually not continue to cope with the treatment. Then there are the different side effects of Carboplatin. Steve tolerated the Cisplatin/Alimta cocktail remarkably well, with the most debilitating issue probably the nausea and subsequent lack of appetite. So, of course I was pleased to read that nausea is often not as much an issue with Carboplatin...until I read of the other problems like reduced blood cell counts, infections, allergic reactions... Everyone here is so supportive, I know you'll give me some encouragement and hints as to how to cope, but right now this is as scary as all get-out. I remind myself of all the posts I've read from those of you who've been living with lung cancer for oh-so-many years, and dealing matter-of-factly with issues, infections, and side effects. So, I know this is all doable, and we'll just take it one day at a time, but I'd be so grateful to hear from those of you who have walked a similar path, especially your experience with Carboplatin/Alimta for a recurrence. So, now I've dumped all this down, I'm taking a deep breath and thanking you for having this forum for me to vent and to research and to prepare for whatever comes our way. Onwards, Louise Link to comment Share on other sites More sharing options...
Tom Galli Posted November 16, 2019 Share Posted November 16, 2019 Louise, A recurrence is indeed a nightmare. I've had lots of Carboplatin but paired with Taxol. Side effects vary from person to person but my most troubling was joint pain. Thankfully it is a rare symptom. You might consider consulting with a radiation oncologist. This discipline is getting very aggressive treating multiple tumors with stereotactic body radiation therapy (SBRT). This form of treatment can at the least reduce the tumor burden and may help future recurrences given the Abscopal effect. One of our members, Judy M., wrote of her experience with SBRT given her stage IV disease. Of course, SBRT if appropriate would need to be performed in concert with his chemotherapy. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 16, 2019 Share Posted November 16, 2019 I’m sad to say welcome back Louise. We had a similar visit with the oncologist last year so I do get the utter devastation. My Lungevity family has been with me every step of the way. There is where the Beatles with a little help from my friends takes on new meaning. One of the gals in my support group has been on Altima for three years now & doing well. One of the essays that pulled me through the darkest days was Stephen J Gould’s The Mean isn’t the Message. Every day people defy the odds. Michelle Link to comment Share on other sites More sharing options...
Louise B Posted November 17, 2019 Share Posted November 17, 2019 2 hours ago, Tom Galli said: Louise, A recurrence is indeed a nightmare. I've had lots of Carboplatin but paired with Taxol. Side effects vary from person to person but my most troubling was joint pain. Thankfully it is a rare symptom. You might consider consulting with a radiation oncologist. This discipline is getting very aggressive treating multiple tumors with stereotactic body radiation therapy (SBRT). This form of treatment can at the least reduce the tumor burden and may help future recurrences given the Abscopal effect. One of our members, Judy M., wrote of her experience with SBRT given her stage IV disease. Of course, SBRT if appropriate would need to be performed in concert with his chemotherapy. Stay the course. Tom Many thanks Tom. We have an oncologist meeting on Monday, so I’ll ask if SBRT might be appropriate. Link to comment Share on other sites More sharing options...
Louise B Posted November 17, 2019 Share Posted November 17, 2019 1 hour ago, Rower Michelle said: I’m sad to say welcome back Louise. We had a similar visit with the oncologist last year so I do get the utter devastation. My Lungevity family has been with me every step of the way. There is where the Beatles with a little help from my friends takes on new meaning. One of the gals in my support group has been on Altima for three years now & doing well. One of the essays that pulled me through the darkest days was Stephen J Gould’s The Mean isn’t the Message. Every day people defy the odds. Michelle Thanks so much, Michelle. Good to know Alimta as maintenance may be tolerated well for multiple years. I’ll check out The Mean isn’t the Message. Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 17, 2019 Share Posted November 17, 2019 Louise, I had the Carboplatin/Taxol combo with my first recurrence. Super Doc administered it with a big dose of Benadryl to prevent allergic reactions. I lost my hair and had a few days (seriously maybe 3) of pain from the Taxol, but that was the worst of it. This cocktail did enhance the prior side effects of tinnitus and neuropathy but I've learned to deal with it. We're here for you every step of the way. Link to comment Share on other sites More sharing options...
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