Sillycat1957

Hello all! Been awhile since I've posted here. Glad to hear all is well with you guys! Sheesh! I went straight to 6 month CT scans after I completed my durva ride. Now I'm waiting nervously for my yearly which isn't until December! My 3yr cancer ned was in May of this yr. My oncologist says I'm fine 🙃 righto! Lots of drama in my Life past 8 months started stupid smoking cigs again tried to stop with all the regular methods nothing is working for me. Oh well hells bells, I'll just keep trying! Congratulations to all and since summer is coming to an end I hope everyone had an enjoyable one! Namaste Roseann

Happy New Year to all! Still kicking the rocks around, gratefully. Everything is stable, since last scan I had in December, except a small 7mm tumor (probably a cyst) the radiologist quoted, my oncologist said no worries, all's good 👍 hmmm. Sometimes I wonder. But hey, been ok so far. So I'll take it. Glad to see everyone is doing pretty ok too. We seem to all be staying ahead of the curves for now. God Bless, stay safe, Namaste 🙏 Roseann

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 💜

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

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

Sounds good to me! Thanks for the article Barb, 👌

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 🤣 Have a great day Roseann

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

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 😃

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

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

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

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.

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 💥 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

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

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 🤪 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

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

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

Tommy, Yay you 🤗 Have a great 4th and wonderful summer! Bagels, ha! Your too much! Take care, Roseann

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 🤗 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

Barb and Polly, I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL! Enjoy your summer! Take care, Roseann

Hey Lindsay, Good news on going forward with #4! I Just had #21 on Monday. I'm getting there! Still every 2 weeks, I wouldn't want it any other way, thank you LOL! I, myself noticed side effects almost right away. By my 2nd treatment I started getting all outta whack. I was getting shortness of breath, severe muscle aches, tingling in both my hands and feet, wicked back pain, headaches, stupid crying all the time. I was just a hot mess! My Oncologist had me skip treatment #3 and most of those issues resolved, so we knew it was from the Durvalumab. She put me on a low dose of Prednisone 5mgs, I wanted to stop treatment all together, because I was pretty scared, but I trusted her so I started the steroid and pretty much have had a few side effects the scared me but were resolved quickly! Now, I still am freakin tired for the first week, recover then back in for my infusion. My tumor has gone down and according to my scans no activity in my lymph node, or anywhere else! So the stuff which I refer to as "nasty *ss crap" is working Yay! So since I'm getting close to the finish line I'm happy, but also nervous as to whats next? Take care, Roseann

Hi Michelle, nice dress! Thanks. I'm more of a dress type of a gal anyway, much more forgiving what with the fluctuating hips and what not LOL! Looks very comfy and the price is something I can afford too! Do you know if the curcumin will mess around with my gallstone? I was taking Fish oil for a long time, but I stopped, can't remember why hmmm. I will have to ask about these combos, so far my weight has pretty much stabilized, I go between 154 up to 158.9, they tell me it's hormones! Haha! I'm 62 yrs old what hormones I say. Anyway, I have to go have a look see on Amazon and order 1 or 2 of those dresses they look so comfy. Thank you again Michelle, I Hope all is well with you❤️ Lindsay, Glad to hear things are A-Ok so far, we are here for you, if you have any questions or concerns, remember no question is ever a stupid question, one or all of us have probably experienced the same thing at one time or another 😃 Take care Roseann

Hi Lindsay Welcome to the Durva Club! I live in Connecticut, so far I still am getting my treatment every other week. I wouldn't want to get a double dose! How does that make you feel, getting it like that? I hope your feeling ok with your treatments going forward. Take care 😃 Roseann

Hi all, Just had #20 this past Monday! So far I'm handling it all ok. I say it's the low dose steroid getting me thru this. My Oncologist agrees. I still have weird aches and pains, and my Onc just shrugs her shoulders and says thyroids good, bloodworks good we will continue with your treatment yes? Well duh! Of course. Gotta love her she is a wonderful Dr, my Dr Chang. Had a virtual or whatever you call them thar telephone face to face visits with my Pulmonologist yesterday, well that was strange if you ask me, he too is chinese, I had a difficult time understanding him, but we got through the visit ok. He said "Oh you gained weight this is good!" Yes I gained 40 lbs! I was 118 when I first saw him in May of 2019 I now am 158, I've been whining because nothing fits me from last year! Bright side I can get some new clothes, down side, I have to order online, Ugh! Oh well, this will be a trip. Polly, so sorry to hear about all the crap you've had to go through! I hope everything works out for you, I'm sure your oncologist has something up his/her sleeve Please keep us posted Hi Jack! Well take care everyone, have a great night 😃 Roseann