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Tomm

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Everything posted by Tomm

  1. Grahame, I was getting 50 grams IV of C before I had my recurrence but was told not to use it now as it is an antioxidant and it may conflict with Durvalumab as it is an oxidant. I got it while I was waiting for durvalumab to start once a week. I also use some THC tincture at night and some CBD (not hemp, whole plant) tincture in the day. I found out that my Vit D was low after a few months, get it tested too. Probiotics have been found to help things work better with this treatment. Do you know what you PDL-1 expressions is?
  2. Welcome Grahame, I'm sorry you have to join us but you are in a group that does share. This group was started last August, you might start on page one to see what a lot of us have learned. There is one thing that has effected most of us: Primary hypothyroidism was the most common abnormality, occurring in 12% of patients before, 38% during, and 23% after immunotherapy. It is important to have your TSH tested before and during treatment, unchecked my TSH went up to 139! I also use a Naturopathic Oncologist that has me using over 12 natural supplements to help, she knows which ones are safe with Durva. If you ask a question you will find someone with the answer here.. good luck on you journey
  3. #19 infusion yesterday, no side effects and onc asked me to stay boring. Still taking some CBD tincture in the day and THC tincture at bedtime. Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help. Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden
  4. DFK ..Great news!! I think you are the 1st person on this site to become NED while getting Durva, anyone else? Enjoy your time off and thanks for sharing your great news. DarlaK Welcome to a great place to learn and teach, thanks for your information on blood pressure, a good read. My naturopath has me taking Nicotinamide riboside for my raising blood pressure and to treat my Afib. It effects your NAD level.
  5. Hi Folks, thanks for all the feedback on blood pressure, I guess no one is alone here with any side effects. I also have chronic Afib but am asymptomatic for 4 years, I see my cardiologist once a year and with no other health issues She does not give me any medication. If my blood pressure is still up next month when I see her again that may change. I hope all scans are clear and side effect a memory
  6. Sillycat good to hear your doing good with side effects, I don't think Durvalumab is given to you for as a maintenance drug, it is given with curative intent and you are #8 infusions on the way. DFK .. I just did some research on my rising blood pressure and found this. Heart Problems: Investigating the Cardiac Side Effects of Cancer Treatments https://www.cancer.gov/news-events/cancer-currents-blog/2018/cancer-treatment-heart-side-effects My OC is watching this and said he may address it soon if things don't improve. take care all... .
  7. infusion #17 yesterday, still boring with all blood work in normal range, no side effects. My blood pressure has been going up for a few weeks, is this a side effect?..anyone else? hope everyone had a good turkey or?
  8. I'm sorry to read about everyone's bad side effects. infusion #16 yesterday. Still boring. All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust. Some people take Diazepam -Valium everyday to help with anxiety. enjoy the season
  9. Eagle 13, DKF, Sillycat ... thanks for the feedback on having a beer Eagle ... hope things are going well for you ... I'd like to read an update on your progress after getting off the Durva journey DKF .. I hope you get some positive results and a treatment plan from your many upcoming tests. Sillycat .. I'm what I call a dry alcoholic and have not had a drink for 5 years, but I want one. My ONC said go for it and I follow doctors orders. I hope you get good results on your Pet Charles ..It sounds like good news to me, keep up the positive attitude and get some sunglasses, your future looks bright. Barb.. I hope your time off has been healing for mind and body
  10. #15 infusion yesterday, all blood work in normal range & TSH 3.71. No side effects, no weight gain, no fatigue, no other health issues no other medications except levothyroxine 150 mcg. I take 12 natural supplement and 1/2 gram CBD (not from hemp). Doctor says I'm boring. I read that no alcohol was allowed with Durva but this week the Doc says I can have a beer but don't drink enough to have a hangover. He said alcohol will not interfere with Durva, I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer? A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others. enjoy the season
  11. Barb ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat .. you may find this interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/ I got #14 today, blood work all good ,most fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights CT says I'm still NED!! enjoy the season
  12. Hi Barb I got my TSH back down from 139 to 4.4 and that ended my fatigue. I take 150 units of levothyroxine and CBD caps at night. I'm busy in my garden 5-6 hrs. a day ..fun time tomorrow when I get a CT. The CBD seems to really help with fatigue..it is legal everywhere. enjoy the season
  13. Ron H sorry to hear your results but it sounds like you have a team looking out for you, I vote for stereotactic treatments, it worked for me twice. When you get your Bio-test back they may have another targeting drug for you if you need it. Keep blazing the trail with us.
  14. DFK This is the brand I used East Cape Te Araroa Premium Manuka Honey UMF Certified 15+ ...Whatever Brand you get make sure it is Certified by the New Zeland govt. This was their liscense # UMFHA Licence # 1024 but this # may change. I could only find the +15 on line, I also used this kind ... Kiva Raw Manuka Honey, Certified UMF 20+ (MGO 850+) hope this helps
  15. Roseann and Kate.. I forgot to ask. If you don't mind what is your PDL-1 expression? thanks
  16. Hi Roseann, Welcome to a place to get information and to share your info. to help others. Good to hear that most of your side effects are going away, you sure did have a WTF bunch of things at once. Getting treatment means you believe in your future, keep blazing the trail with us. Hi Kate, Welcome .. two new folks in one day helps all of us.. thanks for joining and sharing. Fatigue seems to be the most common side effect. It appears that the thyroid gets affected by this drug and most are not tested until the fatigue really sets in. My TSH was 139 when they finally checked me and gave me some meds to correct it (now 63) and many others are or were 45+ TSH. This may be the cause of your fatigue. Believe in the future and be here now and enjoy the season.
  17. Barb .. sorry to hear your having a bit of the unknown waiting for more tests. I use CBD to help with anxiety and sleep and it helps me. this is from the NCBI site https://www.ncbi.nlm.nih.gov/pubmed/30624194 Cannabidiol (CBD) is one of many cannabinoid compounds found in cannabis. It does not appear to alter consciousness or trigger a "high." A recent surge in scientific publications has found preclinical and clinical evidence documenting value for CBD in some neuropsychiatric disorders, including epilepsy, anxiety, and schizophrenia. Evidence points toward a calming effect for CBD in the central nervous system. stay positive
  18. Bob ..unless you know different at this time I believe you are cancer free, enjoy your freedom. I may have asked before but if you don't mind telling what your PDL-1 expression is?
  19. more info on Manuka honey.. the label UMF rating is the most reliable grading system for Manuka honey. The brands have to meet extremely strict standards of UMFHA to obtain the license. UMF certified honey brands are generally expensive but trust me, it’s worth it. Below are the individual benefits of each UMF level: UMF 5+ to 9+ : Doesn’t have a high Methylglyoxal count, meaning very low antibacterial activity. Best for regular use as a healthier alternative to refined sugar and artificial sweeteners. UMF 10+ to 14+ : Honey rated above 10+ is known as Active Manuka Honey. The range between UMF 10-14 possess mild therapeutic effect and is suitable for treating minor cold and fever. UMF 15+ to 25+ : If you are purchasing Manuka honey for treating specific health issues, don’t settle for anything less than 15+. From heartburn, painful sinusitis, high cholesterol, tooth decay to heartbreaking skin breakouts, a high UMF rated Manuka honey is a one-stop solution to all these problems. RonH... Please keep us informed and join in anytime.. your more than welcome, you paid your dues and your in the Club. Barb.. way to go on #10 , your port didn't let them draw blood and when I finished my last infusion and took out the port and started to go home and felt something wet, blood just going down my shirt to my pants.. easy fix but the opposite of your issue? They got a bit upset when I put some on my face... I'm a bit of a smart a**.
  20. DKF Good to hear #17 done for you and your living a "normal" life. 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.. I can tell you that my radiation Doc was very surprised. This may help, do a search on Manuka honey. and this Most conditions that plague your stomach—including small bacterial intestine overgrowth, acid reflux, and low stomach acid—can be mitigated with manuka honey. ... The substance works to balance out the acid in your body. enjoy the season
  21. I got infustion #10 yesterday with no new issues and less fatigue. I did discuss getting some prednisone and my onc said I need levothyroxine to replace lost hormons, it is working. blood work from 4 weeks ago and yesterday glucose from 188 to 128 Bun from 25 to 15 creatinine from 1.5 to 1.2 TSH from 139 to 56.59 .. I'll be getting this test every two weeks for awhile getting ready to watch Pac 12 football, go Ducks...
  22. Ron, good news on your Brain, sorry you need to do the test dance again. I took Atatvin to help relaxe me before radiation and it did help me. I still see things in my lung CT that they say is scare tissue, hope for the best for you. If you don't mind I'd like to know what your PDL-1 expression is?
  23. Charles and Barb.. my onc has not suggested or given me prednisone but I'll ask this week. He started me on levothyroxine 75 mcg. My TSH was 139 and it dropped to 113 in two weeks with this dose, I will get it tested every two weeks for awhile and assume my dose will be adjusted this thrusday. I really want to avoid prednisone if I can. Thanks for the suggestion
  24. Barb ..I'm feeling somewhat better but still dealing with TSH 113 and extreme fatigue. I can still do the grocery shopping, picking food from my garden and making all my meals and then I'm done. Happy to hear all your blood work is normal and your feeling good. DFK It sounds like your doing really well killing tumors. I agree with you that scan every 3 months should be done, it's standard where I am .. on the other hand we really don't want more radiation than necessary. Keep posting for all the watchers to see Durva is working and the year investment is worth it.
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