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Thank You very much for the Information. I’ve read the Johnson Family Blog. Such a serene sunset and the expressions of love for Sam can be felt in this man’s heart. God Bless !
Thanks for the wish of luck. I’ve got my fingers crossed and my toes, legs, and eyes! Ha! I,m not sure if it is IMRT therapy or not. They were considering cyberknife but because mass is over 5cm they decided regular therapy targeted directly on the tumor. Normally they would not consider doing this due to mets in the lungs. However, beings I have only the one tumor mass on the liver and have been dealing with it for so long, they (Oncologist and Radiologist) decided to try it to relieve the pain and maybe because of it’s low grade and low density, I’m Hoping it will do a little more than just shrink, Who knows until you try it? I have had a couple night sweats but no temp. Just the pain because the location is right on the crown of right lobe and when ever I do anything physical It creates pressure on nerves. I was told they normally shy away from radiation of the liver as there is high risk of bleeding, or actually killing the liver due to over radiation. Pros and Cons every where. I’m going to be doing the treatments at Wesley Med Ctr, in Kansas. Actually I’m hanging out waiting for their call to set things up. As far as your Mom’s fevers, cancer and/or chemo can cause them to come and go even after the facts. I’m the weird one with temps that were sub- normal except for when I had a sinus infection. When I first started chemo I was told to keep an eye on the temp and if reached 100 to take IBPROfen 800mgs and keep checking temp. If it didn’t go down within 12 hours or if it spiked upward to go get checked out by the doc or ER. What chemo regimen is your Mom on? Is she getting treatment at a clinic or actual Cancer Center. Not that it matters, I’ve just heard of so many great reviews for certain hospitals and negative for others. Well ya got me rambling again. Ha! just kidding.
P.S. I just remembered when I went to the ER for my fever my blood work didn’t verify any reason either. It was figured out that I had a low grade sinus infection only afterI told them I was all blocked up and pressure around my eyes.
All off my discussions about treatment in Mexico has been very questionable. These are discussions I had on line at other sites and with my Oncology Nurses who have told me some pretty scary events. They also mentioned that there is less control over trial drugs and aftercare is extremely poor. Most people with cancer go there due to lower cost.; and once they have your money; well lets put it this way you get what you pay for. This is not a personal experience just chit chat that I’ve had with others.
Just want to wish you the best of luck with your challenging fight ahead. Think really positive and turn this bully around. Congratulations as well! You know I visited Long Island when I was a teenager. I took a Tractor-Trailer ride with my neighbor in Maine and I think we delivered a load of penobscot frozen chickens somewhere . Skipped school to do it Ha! Mom said just this time. Of course I missed a few more days. It was fun riding the big rigs back then.
God’s speed Jerry!
Just wanted to say thanks! This is a a very user friendly site. You know your right about the 7 years; I had to stop and count the time again. How time just zooms along. Well, I guess I’ll shoot for a decade who knows? You know, I emailed Dr. Nagorney about 4 weeks ago to see about some more resection surgery and he basically told me that it is a systemic situation now and nothing he could do surgically. Excellent Chief of Surgery at Mayo in MN. Thought I would mention if anyone is looking.
Thanks! Gods Speed to you all!
The tea was Eissiac (sp) tea I used to drink x2 daily a couple of ounces mixed with filtered water.
The Soup was called Sun Farm Vegetable soup. Nasty tasting! I also tried their dehydrated vegtable packets. You can mix that with sugar free applesauce and is less expensive.
IP-6 with Inostol powdered formula developed supposively by a group of Oncologists to help boost the immune system and kill off cancerous cells. Can buy at most Health stores or on line. Again, some swear by it others don’t. I use for about 3 months.
Multivitamin/Minerals with lycopene I get at Walmart The equate brand half the price of big company brands. I take a couple tablets in the morning with my Bran flakes and bananas and blueberries all mixed together. Again, Bran Flakes Vitamin enriched generic brand at Walmart.
Otherwise I eat what I want when I want. I love Italian food. I feel a loaded pizza with exra sauce and cheese is a healthy meal. I make my own; puts Pizza Hut to shame Ha! I eat a lot of veggies and fruits actually canned more than fresh as everything in cans has been peeled and cleaned reducing pesticides a bit. I’ve got green tea in the cupboard but never tried it. My wife has a cup now and then.
You know Geoff, I’ve search High and Low and tried many different things. I finally decided to do it my way as I got tired of paying out too Companies who are making billions on these alternative remedies. If you get a blood test CBC wDiFF and Metabolic you can see whats L or H and research yourself just by using your search; I feel it’s so much less bias.
Sorry, I have a habit of Ramblin on.
Keep on Trucking Geoff! Chat anytime!
Hi Alison and Mike,
Just letting you know I’ve read your Mom’s intro and see that you guys are right on with your support. The Only thing I could add to my rambling is cisplatin is harsh and that to take anti-nausea pills every 6 hours during the day and don’t wait to take PRN (as Needed). Cisplatin will cause nueropathy in the feet, toes, and fingers after a few treatments; but nothing compared to what she has already been through.
God’s Speed to you all!!!
Initially the Mayo Clinic in MN thought only the left lobe of my liver was involved, but during surgery my gal bladder was cancerous and removed as well. At the time, I was told all else appeared okay and that I would be fine. I moved from ND to ME where I was born and raised. About 12 months after surgery CT showed something on the right lobe of my liver. A surgeon from the Maine Medical Center wanted to take and do another resection, but after coordinating with the surgeon and oncology tumor board at Mayo, they felt it was a hemoginoma and surgery was cancelled 3 days before Christmas. Six months later another CT and spots on both lungs. Biopsy proved mets. At that time My Oncologist in ME stated there has been no treatment to date that has cured this type of cancer and it was up to me as he stated it could be months or years, that it’s growth is so individual. I chose quality over quanity. I pressed on tried some special tea, soup, IP-6, I ate wild blueberries and bran flakes and a lot of fish. We then moved to KS as my daughter was having our first grandchild. Was followed by Kansas Cancer center for two years having CT’s done every 3-4 months. Spots continued to grow slowly but surely and Oncologist thought it might be a good time to try something. The last two years I’ve been getting treatment at the VA Medical Center as I’m retired military. I have had no radiation yet and I don’t plan on it. The only thing I’ve done consistently is stay busy, eat daily bran flakes, blueberries and bananas. Also take Multivitamins and minerals. I also take 1mg tablet of clonazepam usually once before bed to ensure I get agood nights sleep; basically slow down my nervous system. I strongly feel the nervous system and adrenalin makes a difference on how quickly it grows. Got to keep calm. In hind sight, I’m sure the cancer had already mets but just could not be seen. If I had maybe done some chemo after surgery would it have helped ? who knows? I pray and do a lot of visualization and listening to healing CDs. Again everyting keeps pointing to restful mind and body that includes nutrients, minerals, and exercise with a lot of bubble baths and aroma candles. I think I have really rambled away! Alison, This cancer reacts so differently on different people that I got my affairs in order years ago and just pressed on with life and learned to live with the big”C”. I’ve had my share of up and downs and all arounds believe me; But Your Mom has to be in control not the big”C”. Again , I’m sorry for rambling. If you have any other questions or doubts about treatments feel free to ask, my modesty went out the window quite a while ago.
God Bless You and your Mom!
P.S. I’m going to go read your Mom’s Intro now. Stay in touch if you like. It has been a blessing in disguise just being able to talk openly with people about this challenge of life.
I was on Gemzar and cisplatin for 9 treatments. Very rough with lots of abdominal pains and other side effects. I have nueropathy in feet and hands because of it. Oncologist changed from using cisplatin to carboplatin. A mark difference. I will say that some tumor shrinkage occured while on cisplatin but only short term effect for me. Definitely let your Oncologist know. You should be able to swap to less harsher carboplatin without interupting treatments.
Keep Your Chin Up! Jeff
Same as introduction. Sorry I replied to myself. Must be the chemo -brain effect. Ha!