Sillycat1957 Posted January 4, 2020 Share Posted January 4, 2020 Happy New Year to all! little late but none the less, I am still above dirt and that is a wonderful thing LOL! I had infusion #10 on Monday no problems all is well on that front Yay me! However, my personal life is in the toilet, I would use other words but they would most likely get edited or whatever they do to people who curse! (ban me) LOL! for awhile from posting! I filed for a divorce end of October, was final end of November. I had to do Pro Se since I could not afford an attorney, but we own no property or have anything of value so no big deal. I did have to put in the papers that I would be able to stay in our rental, rent and utility free until the lease is up in April,2020, since I am also on the lease. I am on a small SSDI, I had to withdraw my small pension, and paid as many of my debts as I was able too, but am still left with a considerable amount of debt! My ex is now my ex, because he was never a fair person, well, that's not the only reason, they say there are two sides to a story, well his ain't pretty 😃 anyway I believe my next step is chapter 7. What cancer patient wants to go thru this nonsense not me I tell you. But I thank the good Lord I am a strong and resilient woman. And I will somehow make it thru, maybe win the lottery LOL! I can always dream! Barb, Your getting there! I blame EVERYTHING on Durvalumab, my Oncologist just looks at me and says I understand, but really, I do have those itchies, they drive me insane, they come and go, I have an arsenal of lotions. One will work one day another a different day, go figure. I do know a mixture of the 5 mgs prednisone and the Gabapentin has taken care of my back pain muscle pain, tingly hand and foot feeling and pain. So I am grateful 🌺 DFK, Thank you for that hauntingly lovely poem! I hope you hear from your Oncologist before that root canal, if not best of luck. I started losing teeth a few years before my diagnosis, I mean, normally healthy teeth just falling out of my mouth, I was so malnourished, which was the only symptom my cancer presented. I had no shortness of breath, no coughing, no pain, just the weight loss, so it remained undetected for years. So I ended up with dentures which are the worst thing ever to get used to. So take good care of them there teeth madame 😃 Tomm, Glad your still boring LOL! Oh and BTW, a new medicine added to my mix, a much needed anti-depressant I finally relented Take care everyone, Roseann Barb1260 and DFK 2 Link to comment Share on other sites More sharing options...
DFK Posted January 4, 2020 Share Posted January 4, 2020 Roseann, As you navigate through your travails, know that you have a community of peeps here that will support you. As ludicrous as this may sound, your cancer sounds like the one aspect of your life under control and stable. Here's hoping the rest of your challenges will be met head on too. Great job on getting started on antidepressants. Hang tight, DFK Tom Galli and Barb1260 2 Link to comment Share on other sites More sharing options...
DFK Posted January 8, 2020 Share Posted January 8, 2020 Good Wednesday to all, Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole. Enjoy your day and greet it head on with gratitude. Take Care, DFK Rower Michelle, Opal, Tomm and 3 others 6 Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 9, 2020 Share Posted January 9, 2020 Well my friend, as I read your post for some reason it conjures up an image of Wonder Woman using those magic bracelets to deflect the “evil C”. There isn’t a light at the end of the tunnel- it’s a BONFIRE! Your perseverance is inspirational to all the future Durva Club members. Almost to the finish line, as we say in rowing, good racing! Michelle DFK and Eagle13 1 1 Link to comment Share on other sites More sharing options...
DFK Posted January 9, 2020 Share Posted January 9, 2020 Thanks Michelle, those are some sweeeet "atta boy's" you gave me. I am blessed. My son and his girlfriend, upon hearing of my diagnosis, sent me a care package to see me thru my chemo and radiation. Along with the usual arsenal of comfort potions and lotions, they included a small stuffed rag doll of Wonder Woman. The note in the box simply said, "You are our mom, you got this. Time to pull out all the stops and be the Wonder Woman we have always known you to be". Still brings tears to my eyes.......DFK P.S.-Wonder Woman is our Bedroom Ceiling Fan Pull......a little bit on the clunky side but the grandkids get a kick out of it. Sillycat1957 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 9, 2020 Share Posted January 9, 2020 Congratulations for reaching the end of this long journey. DFK 1 Link to comment Share on other sites More sharing options...
Opal Posted January 12, 2020 Share Posted January 12, 2020 DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished. I vote you and Rower get together and take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on. Giving thanks, Opal Sillycat1957, DFK, Tom Galli and 2 others 4 1 Link to comment Share on other sites More sharing options...
DFK Posted January 13, 2020 Share Posted January 13, 2020 Dear dear Opal, What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder. As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along. Take Care, DFK Tom Galli, Curt, Sillycat1957 and 2 others 5 Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 13, 2020 Share Posted January 13, 2020 Aw, Opal! Thank you both! Sillycat1957 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted January 15, 2020 Share Posted January 15, 2020 Hi Just joined . Stage 3B adenocarcinoma left lung and mediastinal nodes. Completed radical radiation and chemo with Cisplatin and Etoposide and await commencement of Durvulamab. Interested in others experiences Link to comment Share on other sites More sharing options...
Tomm Posted January 15, 2020 Share Posted January 15, 2020 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 Tom Galli 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted January 15, 2020 Share Posted January 15, 2020 Thank you Tomm I have yet to speak specifically with the oncologist about the process and management plan for Durvulamab. Just wait 6 weeks post radiation and chemo before start. Any thoughts on concomitant use IV vitamin C thanks Grahame Link to comment Share on other sites More sharing options...
Grahame Jelley Posted January 15, 2020 Share Posted January 15, 2020 Anyone else have an issue with tapatalk. Won’t accept my lungevity log on? For use in this forum thanks Grahame Link to comment Share on other sites More sharing options...
Tomm Posted January 15, 2020 Share Posted January 15, 2020 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? Link to comment Share on other sites More sharing options...
DFK Posted January 16, 2020 Share Posted January 16, 2020 Hi Grahame, I joined Lungevity in August of 2019 (8 months into my Durvalumab tx's) and found the support and information from everyone invaluable. I started my Durvalumab infusions exactly three weeks from my last chemo/radiation treatment which made discerning side effects interesting. I wasn’t entirely sure if some of my bothersome symptoms were from the initiation of Durvalumab or from my lingering chemo/radation treatments. One bit of advice I would impart to anyone starting on this Durvalumab journey is to be the best advocate for yourself and address any concerns you may have ASAP to your health care team. The wheels of medicine can move slowly so it's best to start the dialog early. Best of luck to you. Take Care, DFK Link to comment Share on other sites More sharing options...
Tomm Posted January 17, 2020 Share Posted January 17, 2020 I got #20 yesterday and was fatigue for the rest of the day, recovered today. No other side effects. My glucose is up a bit and so was my ice cream intake. CT results yesterday... still NED Barb1260 and DFK 2 Link to comment Share on other sites More sharing options...
DFK Posted January 17, 2020 Share Posted January 17, 2020 Tomm, You are slaying it....what an inspiration. Thank you for sharing. BTW, Mensa club member I will never be....took me a couple minutes to get your Hippie joke for Michelle....scheesh, I'm so embarrassed....good one! Take Care, DFK Rower Michelle 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted January 17, 2020 Share Posted January 17, 2020 #18 is done. Just tired last night. No other side effects. Tomm glad you’re doing well. Only 6 for you and 8 for me. Have a good weekend all. Tomm, Opal, DFK and 2 others 5 Link to comment Share on other sites More sharing options...
DFK Posted January 18, 2020 Share Posted January 18, 2020 Great job Barb on bagging #18. It's so sweet doing the countdown. Enjoy your well deserved weekend. Take Care, DFK Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 18, 2020 Share Posted January 18, 2020 Way to go Durva Club! Two more members getting ready to cross the finish line! That’s awesome! Tomm- great news on your friend NED! Rock on! Whoo hoo! Opal 1 Link to comment Share on other sites More sharing options...
Opal Posted January 18, 2020 Share Posted January 18, 2020 Barb and Tomm, you're almost there! You're doing great. You got this! Tomm, nice going on NED! Wanted to share, I remember I was really feeling the fatigue more and more, as I got closer to #26. My joints were screaming a little more too, and at #22, I just wanted to stop! BUT.... Now 10 weeks post infusions I am happy to say the fatigue is just about gone and my joints feel much much better. I think part of the secret is to move more, motion is lotion. Once you get moving cause it's hard to start, it gets easier on the joints and feels better. As for fatigue, take a nap if you need to, you deserve it. For a little achy joint or muscle I take an ibuprofen and it helps. For those who gained a few, I will report I'm having to work at losing the pounds I seemed to pick up. It's my current challenge. Wish you both and everyone else counting down on Durva the best. Opal Tomm and DFK 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 18, 2020 Share Posted January 18, 2020 Opal- What an awesome timely post! This morning I woke up lethargic, feeling fat, with achey alectinib ankles. Then I read, “motion is lotion” so here I am at the gym doing my thing. Thanks for the little push, I needed it today!!! Go Durva Club Go! Michelle DFK and Opal 2 Link to comment Share on other sites More sharing options...
DFK Posted January 18, 2020 Share Posted January 18, 2020 Thanks so much Opal for your "post" Durvalumab report. Questions have been floating in my mind about what kind of return to normality I can expect. I remain hopeful that most of my annoying side effects of fatigue and joint/muscle aches will be minimal. You have given me something to look forward to. Did you have a port for infusions? If yes, have you had it removed? Take Care, DFK Link to comment Share on other sites More sharing options...
Opal Posted January 18, 2020 Share Posted January 18, 2020 DFK I did not have a port. It was my onc's decision and I was good with getting a stick every other week. One in the hand for labs then in the arm for infusion. I'm a big sissy for needles too. I'm repeating myself, mostly from joy, but the lack of fatigue is most noticeable and I am so glad it's gone. I feel pretty much my old self pre Durva, pre diagnosis except for the extra weight. I never had a weight problem so it's a bit annoying. Any other questions, ask away I don't mind. DFK 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted January 19, 2020 Share Posted January 19, 2020 Hi everyone I have had little in terms of information from oncologist about regime for Survulamab and presume at next appointment I will get some further information . Would appreciate your understanding of the typical regime and routine . It appears fortnightly infusions over 42 weeks ? from Opals post pre infusion bloods each time . I guess around an hour per infusion. Any other monitoring ? thanks Grahame DFK 1 Link to comment Share on other sites More sharing options...
Recommended Posts