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Everything posted by Sillycat1957

  1. Hey Michelle, getting to be that time of year again 🍂 nice to be in your thoughts, I just got some emails from Land's End with the new Fall promos 😉 Hey Barb, hope all's well with you too 😁 Life goes on, for that I'm grateful 💜
  2. Congratulations Tomm! I'm still here and kicking life around! One year after Durva. Last scan was in May, tumor still at 8mm so, yay! I come on here once in awhile to see what's happening, usually not much. Fall is just around the corner. It's great to be alive! Namaste 🙏 Roseann
  3. Hi there Terry B, So happy to hear your on the mend. Our bodies do strange things to us while on Durva. I completed al 26 infusions, with a mirad of side effects. I did, however, call my oncologist whenever something didn't just seem right. I was always screened by the nurse first, which in my opinion was best, because they deal directly with us and could tell me better if I should be concerned. My Dr would then call me. With that being said I wish you well and continued luck on your Durva journey 🙏 Namaste Roseann
  4. Hi everyone 😃 Thanks for the updates, I too, Barb have anaphylaxis, penicillin and a most common one Tylenol which is acetaminophen, it's in everything. So I'm still waiting for everyone to get their shots first. A nurse where my daughter works has gotten her first and second shot of the vaccine, side effects were minimal, however she has now contracted the virus! So go figure! She was one of the first group of nurses at her facility to be vaccinated because she is a critical care nurse. So that does scare me too! Well, still a wait and see game for me. I wish everyone the best! Have a wonderful day, Namaste 🙏 Roseann
  5. Golfman, Sorry to hear of your recurrence, but am glad to hear that you have a new treatment plan in place. Best of luck to you! Take Care, Namaste Roseann
  6. Lou T So sorry to hear about your wife's reaction to the vaccine. I hope she continues to improve. And the best of luck to you when you get yours! Take Care, Roseann
  7. Yeah, I guess it's just fear of the unknown. I will go with what my Doctors recommend. If I have a reaction, I hope it is not a bad one, If I don't I'll be very happy 😊 thanks everyone, for your valuable inputs, I'm just in no rush to get it Lol 😂
  8. Well, I choose not to get it. I never got a flu shot in my life! I'm allergic to penicillin and acetaminophen, so I'm very sceptical of any of that stuff. I shouldn't be right ðŸĪĢ I had all kinds of crap chemo, immunotherapy, pain killers Lol! But my Dad died the day after he got a flu shot back in 1995, first time he ever got one 😭 so no I don't think so, not at this time. Just my humble opinion 💟 Roseann
  9. Sounds good to me! Thanks for the article Barb, 👌
  10. Michelle, I love Lands End, they are next on my list for their beloved turtlenecks. I gained so much weight XS just does not work for me anymore, I think I need a M. I have since learned to order both a M and a L and return the one that doesn't fit. Getting smart in my old age, well retail savvy anyway ðŸĪĢ Have a great day Roseann
  11. Hi everyone, I just realized I never hit the submit button on my last post LOL! My shopping trip was very fruitful, fun and very gratifying! Barb, my last PET scan in November showed an SUV uptake of 2.2 down from 15.6 so I guess we both shoould do a happy dance eh! I am just disappointed that Durvalumab didn't do the work that I thought it would, my tumor is still 8mm after Chemo/Radiation combo. I know that is great but I can't help but be bummed, spending a year of being sick and fatigued and in pain in places and having to take stupid pain pills and whine whine foe what seems like nothing! But then again it did halt any progression right? Ugh! now I have to wait until the 24th to see my Oncologist, because our state was put bake in the stage 2 zone because of an uptake of Covid outbreaks, my appt was cancelled til then. Oh well, I'll remain as calm as I can 🙃 Roseann
  12. Hi Barb, Thank you LexiCat and Barb, that helps a LOT, however, I am on my way still to some much needed reatil therapy, the waiting for the results has done fried my brain, So off I go 😃
  13. Barb, still hoping for them great results, saying prayers and sending positive vibes your way! On another note, both of my results are in. My Bone scan came back and everything looks good on that Yay! My CT Scan was confusing, my tumor George stayed the same, 8mm, ok so he just wants to hang around been that size since last Pet scan in Nov of 2019. It also showed 2 nodules that were 2mm on my left lung that were there on previous scans but were not mentioned, WTF! Also I have a nodule on my Thyroid, from my previous scan, that should be followed up with an ultrasound, again WTF! I read through all my previous PET and CT scans and it doesn't mention anythin about nodules in my left lung anywhere, is this kept like a secret in invisible ink until it reaches a certain size? As for my thyroid, I have had multiple small cysts there in the past that have come and gone, but still, if they have been there shouldn't they have been on my report? Also, I should mention, my reports have been read and dictated by the same radiologist. So, did Durvalumab work for me? I'm not feeling very confident that it did right now. On the one hand it shrank my original tumor from 1.7cm to 8mm, but also chemo and radiation was still doing some heavy duty work in my body as well. Hmmm. I am going to do some heavy retail therapy today! I guess I will wait to see what my Oncologist says on the 24th, she is the expert, and I hope she can explain my year of torture LOL! Take care, Namaste, Roseann
  14. Barb, No, no, no, but yes I do understand the scanxiety you are feeling! Wholeheartedly, we want them so badly, yet, then, we are terrified of the what ifs. With that being said, we are better off with the knowledge of knowing exactly what those what ifs actually are, if anything. Could be a wonderful outcome like NED! Or if it isn't, well then, we can get our team of Docs on the ball right quick and get a plan in motion I say 😃 I had my bone scan on Monday, I go for my CT scan on Thursday. Ugh! I don't see my Oncologist until Nov 24th! But I get copies of my scans emailed to me, so I will be sure to be asking for an interpretation from my fellow Brainiacs lol! I will be thinking of you tomorrow Barb, I will say a prayer that your scan will be a clean NED one Take care 🙏 Roseann
  15. I'm always bouncing around reading different threads, and came upon this sandwich question, well my favorite is turkey and salami with provolone cheese, topped with red roasted peppers, drizzled with some olive oil, and some mayo on Italian bread Yum! I hate liver no matter what shape or form it comes it bleh! Take care everyone Roseann
  16. Barb, Never had a bone scan in my life. Last PET scan was Dec of 2019, and MRI was Jan 2020, I was surprised that my Onc was just doing a CT scan and not a PET scan, she said this visit was for re staging my cancer. I'm confused on that front as well, how the heck does the stage of cancer change? Aren't we still... In my case 3A until I progress hopefully I never will. Unless my scans are just NED? IDK I just hope that's the case hoping and praying that Gods' will is that Durva has did it's NED magic 😃 Oh well still a cancer newbie I guess Take care all, have a nice evening Roseann
  17. Tomm, you are just too much lol! glad your still NED and getting back to a normal pace once again 😃 Lindsay, my post Durva life is coming along, as I wait for my scans in November I'm starting to get a little squirrely here though, the scanxiety is starting to kick in! But, I am returning to my job part time next week Yay! so that will keep me occupied (Covid be damned) it will be a safe place to work, and I will be amongst friends and I just can't wait! Question? Anyone else have a bone scan after they completed Durva treatment? I've never had one, I read up on them and I'm just curious, I do have arthritis, and I read an article that stated that ICIs' can cause it to become problematic and cause some cancer progression. I did not like that, at all. This is a short excert of the article from MedPage Today dated Oct 9th, 2020 I can't fit the whole article, and there is no link to share it, so should I be worried? Thanks and Take care Roseann ***Cancer patients treated with immune checkpoint inhibitors (ICI) who develop severe arthritis may be at risk for progression of the malignancy, a single-center study suggested. Almost 90% of patients treated with ICI develop immune-related adverse events, which can include pulmonary, gastrointestinal, dermatologic, and rheumatic events. Arthritis has been reported in almost 4%, with the most common presentation being a rheumatoid arthritis (RA)-like phenotype characterized by small-joint involvement. In a cohort of 42 patients with ICI arthritis whose baseline Clinical Disease Activity Index (CDAI) was 15 and who were followed for a median of 7.4 months, the median time to arthritis onset was 2.8 months, according to Karmela Kim Chan, MD, of the Hospital for Special Surgery in New York City, and colleagues. In a multivariable analysis that adjusted for time to onset of arthritis after initiation of ICI therapy and for the use of disease-modifying antirheumatic drugs (DMARDs), each one-point increase in baseline CDAI was associated with a 9% increase in the likelihood of cancer progression (HR 1.09, 95% CI 1.00-1.19, P=0.05), the researchers reported online in ACR Open Rheumatology.
  18. Wow, It's a good thing you found this out now, before it became a bigger than life kinda of issue, which can sometimes happen with These types of things. Good luck! Roseann
  19. Thank you all for your input, I have some pondering to do, I reckon. Tomm, when I have CT scans they use a vien, guess they are not skilled in using a port. Barb, I kinda feel like you do, why tempt the cancer monsters at rest Opal, you brave woman! You must be Wonder Woman in disguise! You go Girl ðŸ’Ĩ Eagle13, hmm, I am happy, you are happy! Continued blessings Namaste 🙏 Michelle, meant to say in my earlier post love your photo, so nice to put a face to a name. You are lovely my dear! Good Day all! Roseann
  20. Thank you everyone, yes I'm a well baked done Durva Queen LOL! Hopefully now on to somewhat of a normal life, not being tethered to a cancer center every other week! Just a port flush every 6 weeks until I can have it out, as long as all goes well after my scans. Question, to others that have finished? Did you have your port removed? Or were you one of them there brave souls who went the straight in the vein route? I shudder when I think of those that have done that! Tomm, yes you are a weredoe lol! Good day all Roseann
  21. Barb, a little late, but good for you! I hope every cell comes back cancer free! On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club ðŸĪŠ I can be quite dramatic at times! But all's good. I had a few hic cups along the way. I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't? Guess I will just wait for my scans and appointment in November 😁 Have a great weekend everyone Take care Roseann
  22. Lindsay, That is Wonderful, Fantastic, Great news! I would definitely have a celebration of some sort today! Durvalumab has shrunk my nasty tumor whom I refer to as George as well. Take care, Roseann
  23. Just had #23 today, getting there! TSH levels are climbing, Onc going to do a more in depth work up, Ugh! Always something huh 😃 Michelle, SSDI is a long drawn out process, good news is it's retroactive, I really don't understand the hold up Stage 4 should be automatic. My original diagnosis of Epilepy is on the list of automatic qualifications, but it still took me 3 yrs to get approved! But I still had to get an attorney, then I had to agree to only 1-1/2 yr of retro pay go figure on that one too. He of course got his 1/3. My approval was very quick when he got involved! Also before my cancer diagnosis, when we are on SSDI we are able to work and make up to $1,280. p/mo I went over a few months by approx $50. and $80, and a few small amounts, due to my commissions, I had to pay back my full months benefits! Just a heads up if you decide to get a PT job out of sheer boredom. Needless to say, after my cancer diagnosis, I was reinstated to my full benefit rate. Cancer is also an automatic qualification, I think these people reviewing SSDI claims are clueless, sometimes I think they feel like they are doing the government some sort of services by denying claims when actually, it is money we and our employers have paid into the system burns my butt! Barb, Like Michelle said, I too, only listen to my Oncologist when it comes to my cancer, she says I'm ok, so I must be right? Everyone enjoy your week, New England is being a little touchy right now, doesn't know if it wants to be sunny, rainy or what 😃 Take care, Roseann
  24. Tommy, Yay you ðŸĪ— Have a great 4th and wonderful summer! Bagels, ha! Your too much! Take care, Roseann
  25. Hi Barb, Insurance companies stink! I'm on Medicare, so maybe there's a difference, I was diagnosed in March of 2019 started treatment in May. I had 2 PET scans in 2019 both were covered 100% also MRIs and I think, 4 CT scans, I also qualify for extra help because I'm low income. With that being said, I worked in the insurance authorization department awhile ago, I would tell people to just keep calling back until they get a rep who knows what to do to get an approval. Hopefully your Oncologist can get an approval for you using a diagnosis code like a suspicious symptoms that require further testing, such as a PET scan ðŸĪ— I'm praying for you, hopefully this gets sorted out quickly. There's nothing like not knowing if the torture we've gone through has been worth it right? Stay strong 💊 there my fellow Durva friend 💜 Take care, Roseann PS bagged #22 YAY
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