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Everything posted by Tomm

  1. Hello All... I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions. How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L. Get your Pd-L1 checked too. I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 years now. I want people to know there is hope and Durva does work for many. Stay safe. old joke ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab
  2. SteveD.. more on PDL-1 PDL1 (Immunotherapy) Tests What is a PDL1 test? This test measures the amount of PDL1 on cancer cells. PDL1 is a protein that helps keep immune cells from attacking nonharmful cells in the body. Normally, the immune system fights foreign substances like viruses and bacteria, and not your own healthy cells. Some cancer cells have high amounts of PDL1. This allows the cancer cells to "trick" the immune system, and avoid being attacked as foreign, harmful substances. If your cancer cells have a high amount of PDL1, you may benefit from a treatment called immunotherapy. Immunotherapy is a therapy that boosts your immune system to help it recognize and fight cancer cells. Immunotherapy has been shown to be very effective in treating certain types of cancers. It also tends to have fewer side effects than other cancer therapies. Other names: programmed death-ligand 1, PD-LI, PDL-1 by immunohistochemistry (IHC) What is it used for? PDL1 testing is used to find out if you have a cancer that may benefit from immunotherapy here is the link https://medlineplus.gov/lab-tests/pdl1-immunotherapy-tests/ and a joke... Atheism is a non-prophet organization
  3. SteveD sorry to hear about your bad reactions... I suggest you try CBD oil in a tincture, it's good for a lot of your problems. Do a search about it and talk to your doctors 1st. Most people on this Forum that had to stop Durva because of side effect did start again after a pause. Do you know your PDL-1? good luck on your journey
  4. Lindsay.. real life after Durva, as Doctors tell us after we find out we have cancer and we ask what to expect they tell us we are all different. I was NED when I started Durva and stayed that way during my entire treatment year. I finished in March and still have some fatigue but am now able to mow my lawn and harvest my garden and go to the grocery for my curbside pickup. My onc tells me non of his Durva patients has had a recurring cancer after Durva is done. So real life after is great, your future is Bright. I got results from my CT last week... still NED Good news! There are well over 100 labs in America working on developing a vaccine. Just wait til they get the German shepherds involved! .
  5. Roseann, my last infusion was in March and I still have my port, they use it for my CT with contrast every three months (tomorrow) and the doc said if it isn't a bother to me he will leave it in. Why did the chicken cross the road? Because the chicken behind it didn’t know how to socially distance properly.
  6. Roseann congratulations on joining the Done with Duva club. A year of your life is a big investment and it appears it paid off for you. A link on Naltrexone .. https://khn.org/news/naltrexone-addiction-medication-chronic-pain-treatment-small-doses/ and this link is about it's use for cancer treatment https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6126779/ I get it from my naturopathic oncologist. I was once bitten by a rabid female deer. Now, every time there's a full moon, I turn into a weredoe.
  7. Barb .. I hope the results show you are cancer free down to the cell level. Good news! There are well over 100 labs in America working on developing a vaccine. Just wait til they get the German shepherds involved!
  8. Barb Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva. Grahame .. enjoy the wedding and the cake that goes with it . That's really fast good news on you progress. Lindsay ...Hope you get great CT result .. #10 already ..your on your way thanks everyone for the good wishes ..I hope you all enjoy the season Q: What do you get when you combine an elephant with a fish? A: Swimming trunks! Q: Why don’t oysters share their pearls? A: Because they’re shellfish!
  9. I got a surprise phone call today from my onc nurse today. The results from yesterdays CT is NED. I was NED during my year of Durva. It managed to keep my cancer away ... good news for all patients. What do you call seagulls that live near the bay? Bagels.
  10. Hi Barb.. I have never gotten a Pet scan and when my last Durva. treatment was cancelled because of Covid in March so was my CT to see if I was still NED. Today I finally got a CT and a port flush. My thinking was (is) if no one says I have cancer then I don't. Roseann ..Good to hear your almost in the Done with Durva club Summer is here, so I'm moving all of my bad habits outside.
  11. Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it" I like that feeling and now I have scan scanxiety again. My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5. I got meds to fix it and in a month or so I was down to 3.6. I did not gain any weight during the entire treatment. Now that treatment is over I have itching from my knees down to my ankle at night. We are all different... take care all..enjoy the season What did the little corn say to the mama corn? Where is pop corn? How do we know that the ocean is friendly? It waves!
  12. Lisa66 enjoy the greatest new lung cancer drug with curative intent this is true at my house
  13. Ron ..this new information sounds good to me, my last CT stills shows post treatment things in my lung. When you wake up in the morning you know your still here and you have a large team watching after you. Barb congratulations on making it to #26. I'm starting to feel much more energy now that I'm done I hope all the Durva club has a great spring and nice gardens Stay Safe Do you want to hear two short jokes and a long joke? Joke, joke, jooooooooooooke.
  14. Barb ..nice to hear your almost ready to join the I'm Done with Durva club. I get out of my house but not out of my car. These are the places that I ordered and paid on the phone and when I get there I call and they put it in the back of my car. Garden store, hardware store, pizza shop and grocery..my dog enjoys ride and I like the no traffic. Watch a doctor demonstrate how to safely bring groceries home during the coronavirus crisis. enjoy spring everyone A photon is going through airport security. The TSA agent asks if he has any luggage. The photon says, "No, I'm traveling light."
  15. Barb... did you get your thursday infusion?
  16. infusion #26 for this Thursday canceled today. The CT due after the final canceled, port will not be removed.. canceled. Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? I wish the best for my fellow travelers on this journey ..Stay Safe Why do they call it the novel coronavirus? It’s a long story…. Why didn’t the sick guy get the joke? It flu over his head. Why don’t chefs find coronavirus jokes funny? They’re in bad taste. I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it. Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there. Finland just closed its borders. You know what that means. No one will be crossing the finish line.
  17. #25 done with good blood work and some fatigue When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19. All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients. I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. good luck to my fellow Durvies.. Joke #1 I know a great joke about Corona Virus, you probably won't get it though. Bonus joke... Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice. ,
  18. Hi Judyp .. The fact that your mass shrunk 20% so fast is great progress in a very short time. This the place to vent anything, I tried to do that at home but my wife says I'm lucky to be able to get treatment that was not here 26 months ago. This is a re-post I made before.. I had radiation next to my esophagus for 30 days and I ate a spoon full of Manuka Honey on the way to treatment and another later in the day. I did not get esophagitis or have any problem with my throat. If you can't get Manuka honey any honey should help. It may help with your cough.. Good luck on your journey with us
  19. #24 today with normal blood work and some fatigue. Kate and Barb ...Great news to hear NED from two today. I know Barb was concerned about the side effects before you started to get Durva and you got the best one NED!! "Why do cancer patients love puns? They have a great sense of tumor"
  20. DKF I've already heard like seven cancer puns today... If I hear tumor it's gonna benign
  21. Grace Ann NED means no evidence of disease .. this is a link to dispensarys in North Dakota where I hope you can get what you need. https://www.health.nd.gov/mm/dispensary-locations
  22. He Grace Ann.. In Sept. 2016 when I found out I had stage 3a lung cancer I started taking 1000 mgs of oil a day in caps. 333 mgs of pure CBD in the morning, 333 mgs of 1/2 thc and 1/2 cbd at dinner time and 333 of thc at bed time, 8 hours apart. A theory is to take as much as you can as soon as you can. After chemoradiation I was NED for 2 years and had a recurrence that put me in stage 3c. I did the same thing and got the same results of NED. Now on Durva. for 3 more infusions. I had no side effects except fatigue, no pain, no loss of appetite, no sleep loss, no neuropathy.. did have some hair loss. I now use a tincture of CBD 200 mg. in the morning and 200 THC at night. If you do a search for Cure Your Own Cancer you will find more info. If you use tincture start with a low dose and increase until it works for you. Good luck on you journey... "A clear conscience is usually the sign of a bad memory."
  23. Babs ... turmor scar tissue and no signs of cancer cells is great news. I am NED and the scar tissue still shows on my CT. It is advised that we all get our thyroid checked, it was the cause of my fatigue. I was given levothyroxine and in about 6 weeks fatigue much less. Have your husband take notes so you can read them at home, it helped me. "When tempted to fight fire with fire, always remember… The fire department usually uses water."
  24. Hi Babs ..Please complain.. this is the place to do that and it helps to inform others that may think it's just them. My side effects started to go away after infusion #9, my thing was fatigue because they were not checking my TSH and I went up to 130+, now down to 5.1 with medication. Tell you doc of your side effects, he may be able to help with that. Hope you get great CT results.. "A TV can insult your intelligence. But nothing rubs it in like a computer."
  25. Hi Polly it's good hear your on your way with Durva and your killing your cancer. I look at side effects as part of the battle going on in your cells with the Chemo and radiation still in the fight and now getting help from Durva. It's OK for you to call your Doc anytime you have a worry and he-she may have some help for you & or ask here and someone may have an answer. keep us posted and drink lots of water "I have a lot of growing up to do. I realized that the other day inside my fort."
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