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Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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Author | Topic: Living with Cancer (from Cancer Survivors) | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Today we move to different bnb, a dry run for packing to leave. Some laundry to get home.
A few loose ends to tie up, dr appointments to make for back home. Some site seeing. Should be good by our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Well it's been a month since this started (or longer, there were signs I ignored before leaving), but we are getting settled into a new normal here at home.
Been in hospital twice here to get lung cavity drained (total 8 1/4 L or over 2 gallons) of fluid. It seems I am accumulating the fluid at a rate of ~1/2L per day, due to lymphomic production and blocked drainage. I've started a new chemo regimen, periodic trips to hospital for an infusion, and in between taking nasty pills at home on a strict schedule (at least it is at home). A nurse comes by every 2 or 3 days to drain the lung cavity (I have a catheter in my side). The trip home was fun at first. The first morning we went through Glacier National Park on a bright sunny day with snow draped mountains and blue sky. Glacier is one of my favorite parks. But then we hit the plains and it was snorzeville. Chicago was a madhouse, and the run down to Washington has to be one of the oldest tracks we traveled. Bumpy and lurchy, and that didn't add to comfort. Food was good (I could even get a rare steak), but I am glad I had my earplugs along. From DC to Providence was on the Acel fast train, but no meals. My remembrance of the Canadian trains we took in the 70's was much smoother and more space. May have to test that out. My (old ready to die) Android tablet broke and I took advantage of son's knowledge to get a new ipad. It does what I wanted the tablet for, but I am frustrated by picture and file sharing limitations. I'll have to use web application to cloud net and get all my pictures together from phone and ipad and the chip from the tablet. Maybe later today. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
Well that plan went out the window. I have now spent more time in hospital than out since 13Feb.
Started chemo 21Mar and was dealing with after-effects when I fell getting out of my chair. We went to ER by ambulance,and while waiting for them to determine there were no head or neck injuries I spiked a fever, so admitted again, now with added joy of urinary catheter ... which means I now have an additional issue to deal with an enlarged prostrate shutting off flow. Discharged 30Mar, and now will have to reboot the chemo plan. More to come. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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This link has been in the news streams for a while now since the historic legal case where Monsanto lost to the victim with Non-Hodgkin's Lymphoma ...
Here is more evidence
quote: Now I know I used Roundup occasionally pre 2005 when I was diagnosed with Non-Hodgkin's Lymphoma ... That's the bad news. What I don't know is whether it was sufficient exposure, nor how hard the causal link is. Hope to have a further update soon. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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I noticed that you have been posting frequently lately, which sounds like good news regarding your overall health. Are you back on track after Spring and Summer? Well Phat (et al), this has been the year from hell. Started in March, I had been a little tired and out of sorts, but we went to Portland Oregon to see our son and significant other, and that's when it hit me. We stayed at an airBnB and 3 blocks away was a Japanese Botanical Garden, we thought we walk over and see that while the kids were at work. The entrance path zig-zagged up a mountainside. There was no way I would be able to walk up there. On the way back there was a walk-in clinic, so we walked in and told them I was short of breath. They took an xray:
and sent me to hospital, where I spent a week. They drained 4 litres of fluid from my lung cavity (imagine putting a gallon jug of water in your chest) and tested it for infectious disease (pneumonia etc) but in the end it was all lymphatic fluid ... the cancer, back after 5 years remission, was trying to drown me from the inside. After a couple days with the kids, once out of hospital, we took the train back to RI. Through Glacier Natl Park. With clear blue skies and 6ft of snow on the ground, it was spectacular. One of my favorite parks. Back in RI and back in hospital, I emerge a week later with a drain tube in my lower back and a picc line in my arm for chemo infusions, as I am now back on treatment. Weekly visits to infusion center, weekly visits from visiting nurse to drain the chest as I am producing liquid at several cc's a day. Then in June I apply to join a study at Dana-Farber to test the CAR-T treatment on people with non-Hodgkin's lymphoma. We had an interview, and the only restriction against getting in was the chest fluid -- I would be eligible if I could get that stopped. This is big, because it is a possible cure:
quote: The chemo-therapy I was getting did not seem to affect the fluid production, so we switched to an alternative. Then I had high white cell counts and went into hospital again with a slight fever. A week later, no cause for fever found, I was discharged. That night I started throwing up, harshly. So back in hospital where ultrasound showed I had a twisted intestine and had (my first ever) surgery (25 staples to close) and the surgeon said that in another 2 days I could have died. Spent another week in hospital for observation. At that point I weight 50 lbs less than in March, mostly muscle loss, so weak and tired, and I was going to build new back porch. Lined up a contractor to do it, but 2 or three weeks before he could start ... that turned into 4 as his other jobs were delayed by incessant rains. Then he told me he had too much to catch up on and would understand if I looked elsewhere. It's now end of summer, I've spent most of it inside and inactive due to condition. So I line up a couple friends to work on it, and it is now almost enclosed for coming winter. Lots left to do. So I get Physical Therapy to rebuild muscle mass and energy, which goes fine ... and then I get a post operation blood clot (another hospital ER visit) ... When all the dust settles I check back with Dana-Farber, the liquid has stopped filling my lung cavity and things look good ... but now the blood clot is an exclusion from the study. The good news is that Dana-Farber has had such good success with the study that they are considering fast-tracking it for approval for treatment, and the restrictions (like blood clots) would not apply. And it's November ... where did spring/summer go? Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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so tired.
weak, no energy. walk across the room, out of breath. Starting regimen 4 for the past year, the last 3 each taking a chunk out of me, but barely touching the cancer. No sores, except aches and joint pains. a struggle to dress, make breakfast. thankful for partner to pick up slack, an angel. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Seems I missed something ... new server?
Would you like your razd subdomain moved over to the new server? Yes please -- the links to it from threads will work? Thanksby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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To bring all you lovely people up to date,
My current treatment involves two therapies, one a pill I take at home the other an infusion done at hospital. The pill I take one a day for 21 days, then 7 days off (the intermission), then repeat. It hammers me, and by day 21 I have almost no energy to do much more than read small bits. I am now on day 5 of my first intermission, and am amazed how much energy and interest I have regained -- been getting out some, instead of being housebound. The effect had built up so gradually I hadn't really noticed it. Monday I start round 2. The infusion I get once a week for the first 3 weeks and then once a month. Just finished the third one, so next week I get a free day. Whee. The other symptom/s of my lymphoma is that it is producing a lot of liquid that gets lodged in various places. First in the lung cavities between lung and surrounding tissue, reducing my ability to breath. This happened first in my left lung and now in my right. I get it drained regularly, and the left has pretty much stopped, while the right is getting less. Unfortunately I am left with ~20 to 30 % permanent loss of lung capacity due to scar tissue buildup, and it will take a bit of cycling to overcome that. Then it filled my right leg with (lymphodema) fluid, and medication to address this can cause low blood pressure and fainting. My normal blood pressure is already low (110/65) so that is out. The solution we found is to put on my cycling tights and push back on this liquid. In two days I lost ~8 lbs, which is about what a gallon of water weighs, and the leg looks much more normal. Overall I feel okayish today. Weight now down to 145 lbs for first time since high school, so some muscle buildup is recommended, and I have physical therapy 4 days a week. So if I fade away again, look for me in ~28 days. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Starting pills again. Had my 2^3x3^2 birthday during the intermission, which was nice.
I also started a fund raiser for The Leukemia & Lymphoma Society
quote: You can access on facebook herethere's a donate button on the page. Thanksby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Time sure flies! Here it is the end of March, nearly April. What phase of the 21 day/7 day cycle are you in? The 21 days of pills concludes tonight.
... but why not rate your strength on a scale of 1 (weak) to 10 (strong) so we know. ... 2. I lost 50 lbs in the last year, most of it muscle mass due to lying in bed so much. Home physical therapy has ended. I graduated to get outside therapy, and have chosen the local Y. First time on stationary bike I managed to ride 1 virtual mile (vm), and have increased that to 4 vms. I try to go 3 times a week. I want to be in shape to ride my cycle buddies annual birthday ride -- 70 miles -- in August. I'll keep you posted. Enjoyby our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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So I now have the results from 2 days of extensive testing to see about being admitted to the CAR-T treatment study.
The bad news is that I did not qualify for two reasons. The first is that my platelet count was too low (600 instead of 750 minimum). This study is now no longer open (I was the last person to be considered). This means waiting 2-3 years for it to become approved for use. The second reason is also the good news. The PET scan found no active sites to gather cancerous cells from to make the DNA targeted T-cells to attack just the cancer cells. In other words, at this point I am in remission, and continuing the current pill treatment should maintain that condition. This does not mean the cancer is cured, just that it is not killing me at this time. It has taken a year to get here. This also means it is a good time for another stem cell transplant, with more likelihood of success. I will be meeting with my oncologist to discuss moving forward. Paul, aka RAZD Sent from my Samsung Galaxy smartphone. Edited by RAZD, : .by our ability to understand Rebel☮American☆Zen☯Deist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
quote: Fairly innocuous Enjoyby our ability to understand RebelAmericanZenDeist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
Still planning on riding the bike again? ... Been riding some. My longest this year so far is 12 miles. Better than the 4 miles last year. The YMCA here has a LiveStrong program for cancer survivors, and it has helped be gain strength and endurance. Mostly with stationary equipment and weight training. Endurance is my main issue at the moment. Last year with all the hospitalization etc I lost 50 lbs and now have 25 back. A lot of that is/was muscle mass (especially in the legs -- when I first tried on my bike shorts they fell off, now they stay put). Have to take it easy for a bit, as I just had hernia surgery. Next week we're off to Portland OR to see the kids and their new house, and to visit with old friends who are now professional house sitters and just happen to be in Portland. Then train into Canada and through the Canadian Rockies (Jasper park). Should get some good walks in. Enjoy by our ability to understand RebelAmericanZenDeist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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... It has for me as well. ... Wonderful news.
I hope that you enjoy your trip through Canada. I drove back out to Alberta during the summer through Jasper and it is sure a beautiful part of the world. My home town is Medicine Hat and as beautiful as it is here in Victoria ... We lived in Cadboro Bay for a (too) few years and loved the area and all the available hiking trails.
... I still feel more at home in big sky country ... For me it has to be coastal, and rocky preferred to floodplain flats. It the salt smell in the air. I'll wave (waft?) in your general direction when we stop in Vancouver. Enjoyby our ability to understand RebelAmericanZenDeist ... to learn ... to think ... to live ... to laugh ... to share. Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)
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