Lin wilki Posted September 23, 2020 Share Posted September 23, 2020 So I did get my electric bike- a blast! But even a short ride and I’m exhausted. So treatment yesterday. Saw my nurse and PA and gave them the laundry list of pain, exhaustion the ever annoying dry mouth, coughing. They were concerned and ran more thyroid tests — thyroid is fine, darn it. It seems like side effects are constant. I never get any energy back. If I do basically nothing besides one very short walk the next day might be better. But any excursion just wipes me out! So the suggestion was to prioritize what I want to do then take it easy. Limit phone calls to 20 minutes cuz that increases dry mouth and cough. Life is small! I pray it gets better Scan before next treatment so see where we’re at. If Kadcyla is still working I guess I just put up with it for now Been missing the Zoom cuz I’m too much pain. Hope to see you all soon HAPPY BIRTHDAY 🎂 Tom!!! Link to comment Share on other sites More sharing options...
GaryG Posted September 23, 2020 Share Posted September 23, 2020 Don't give up on the bike. It takes few days to get back to normal. As for the dry mouth, swabsticks help a little bit. Hope things get better soon. Darn those side effects! Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 I won’t give up on the bike! I love it But I’ve been at this treatment thing for 16 months and the only time I kept feeling worse was on immunotherapy and it wasn’t working! My nurse said this target chemo is cumulative so that might explain not getting a break at all on side effects Time will tell Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 24, 2020 Share Posted September 24, 2020 Hi Linda, So glad you got the e-bike! Body movement is so important during treatment it’s time to get really brutal with tasks. Dishes can sit in the sink, dust can pile up, phone calls can wait. Have you ever seen this: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ Yesterday I was totally wiped after my video doctor appointment and I still went out for a walk which meant Tim came home from work last night with a sink of dinner dishes and recycling to take out. Fingers crossed for good scans. Hope you can Zoom this week! Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 Thanks for the article. Coincidentally my PA mentioned the spoon theory yesterday to prioritize my day Going to give it my best shot! Link to comment Share on other sites More sharing options...
GaryG Posted September 24, 2020 Share Posted September 24, 2020 15 hours ago, Lin wilki said: I won’t give up on the bike! I love it But I’ve been at this treatment thing for 16 months and the only time I kept feeling worse was on immunotherapy and it wasn’t working! My nurse said this target chemo is cumulative so that might explain not getting a break at all on side effects Time will tell Hi Lin: Glad you mentioned the word cumulative. I am on my 4th infusion of the triplet. Till this one I was lucky enough to avoid side effects, eat well and sleep well. This time though, I felt tired, struggled with appetite and had a dry mouth. This should be my last Carboplatin infusion and I hope and pray the cumulative effect of 4 carboplatin infusions is what did me in. Maybe it stands a reason why they don't recommend 6 Carboplatin infusions any longer. I will be on Keytruda and Alitma going forward so your comment on immunotherapy got my attention. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 24, 2020 Share Posted September 24, 2020 Lin, In my time of treatment misery, I had to neck things down to just getting beyond the next hour. I vividly recall the exhaustion and pain you speak of and I can report life gets better after treatment. For me, job one was to destroy the persistent lung cancer tumor that threatened my life and everything else in terms of diet, exercise, career to a back seat to job 1. When job 1 was complete, I started focusing on life expectations. Don't get me wrong. I think it is wonderful that you are exercising during treatment. Indeed, you should continue. But, try and moderate your performance expectations; exhaustion and pain are very common side-effects in active treatment. They resisted all my efforts to counter or manage. Thank you for the birthday wishes and I do look forward to seeing you on a future zoom call. Stay the course. Tom Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 21 minutes ago, GaryG said: Hi Lin: Glad you mentioned the word cumulative. I am on my 4th infusion of the triplet. Till this one I was lucky enough to avoid side effects, eat well and sleep well. This time though, I felt tired, struggled with appetite and had a dry mouth. This should be my last Carboplatin infusion and I hope and pray the cumulative effect of 4 carboplatin infusions is what did me in. Maybe it stands a reason why they don't recommend 6 Carboplatin infusions any longer. I will be on Keytruda and Alitma going forward so your comment on immunotherapy got my attention. Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 Alimta is much easier but I never had Keytruda. My first line of treatment was a trial. SBRT followed by opdivo and Yervoy. Lots of side effects started then and continue and I add more as treatment changes! Good luck! Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 The most distressing thought is I will never be done with treatment! That is never mentioned and I guess I always thought I would have some treatment for maintenance. It’s a long haul! Link to comment Share on other sites More sharing options...
LexieCat Posted September 24, 2020 Share Posted September 24, 2020 Hi, Lin, The exhaustion and inability to concentrate are the effects troubling me the most (also a bit of constipation, but not too bad). Thankfully, I've had NONE of the nausea/appetite issues so many people have. Food still tastes good and I'm eating well. Whether it's the Zofran or just a lack of nausea I can't say (I've been taking the Zofran regularly and so far so good)--I did ask the doc for a version I could swallow. The tablet that dissolves grossed me out--too sweet and the chalky sensation was awful. So now I just swallow one on schedule and I'm good. I bought an ebike RIGHT around the time I was diagnosed. I've been out on it only a couple of times. Now that the weather's better and I've stopped working, I'm hoping to get out for at least a few rides here and there. I'd actually ordered a second bike (to ride with friends) but realized I probably wouldn't be riding enough to justify the second one so I canceled. What kind did you buy? I bought a Rad Power Bike (RadCity) and it's terrific! Link to comment Share on other sites More sharing options...
Lin wilki Posted September 24, 2020 Author Share Posted September 24, 2020 I bought an Aventon step through 350. Plenty of power for me! Around our subdivision I couldn’t do any hills which left me with looping around the cul-de-sacs. First e bike ride in subdivision my husband couldn’t keep up! Empowering! Firrst ride on trails- it was a windy day. I worked almost all the assist levels to keep up with husband Ok he put me to shame! Anyway I enjoy it and hope we can ride still in November. A blast! Link to comment Share on other sites More sharing options...
MarieE Posted September 25, 2020 Share Posted September 25, 2020 23 hours ago, Lin wilki said: The most distressing thought is I will never be done with treatment! That is never mentioned and I guess I always thought I would have some treatment for maintenance. It’s a long haul! This is what is most concerning to my husband and me as well. The drugs have completely destroyed his quality of life. Fatigue, nausea, lack of appetite and taste, and major weakness and weight loss have taken away most of what we used to enjoy doing. We are just hoping that the next scans show some improvement to make it all feel somewhat worth it. Link to comment Share on other sites More sharing options...
Lin wilki Posted September 25, 2020 Author Share Posted September 25, 2020 Exactly. Worth it? Let’s hope so!! Link to comment Share on other sites More sharing options...
GaryG Posted September 25, 2020 Share Posted September 25, 2020 Today cancer patients are lucky to have many new and successful drugs. The missing link is the exact sciences determining what drug works best for each patient. Target therapy is a good step forward but individualized cancer care is a long way away. We all need to push our legislators to create a common data center where clinical trials and patient data are stored and shared. Link to comment Share on other sites More sharing options...
LouT Posted September 27, 2020 Share Posted September 27, 2020 Lin, Coming to this late, but i hope you are feeling a bit better each day. The symptoms surely sound disturbing, but you are stronger than they are. Lou Link to comment Share on other sites More sharing options...
Lin wilki Posted September 27, 2020 Author Share Posted September 27, 2020 Thanks for the encouragement. I am mostly worried about the cough which has certainly gotten worse. My last scan was August Onc said tumors dying. Next scan in early October. I am a little worried what they find My PA did say I should check in with her and let her know if I’m feeling better. Hopefully by next week I can tell her I am. Time will tell Link to comment Share on other sites More sharing options...
Lin wilki Posted October 22, 2020 Author Share Posted October 22, 2020 Marie. So I was right Kadcyla not working. Now on oxygen (sure feel old) and need PET and biopsy oncologist mentioned one chemo or Maybe? trial. Nothing promising So will have to decide - trying to kill cancer is really beating me up! Worth it? At least I am somewhat maintaining my weight But the pain and exhaustion is very limiting. How’s your husband doing? Link to comment Share on other sites More sharing options...
MarieE Posted October 22, 2020 Share Posted October 22, 2020 56 minutes ago, Lin wilki said: Marie. So I was right Kadcyla not working. Now on oxygen (sure feel old) and need PET and biopsy oncologist mentioned one chemo or Maybe? trial. Nothing promising So will have to decide - trying to kill cancer is really beating me up! Worth it? At least I am somewhat maintaining my weight But the pain and exhaustion is very limiting. How’s your husband doing? We are in a similar situation. My husband's recent scan showed the drugs are not working and my husband has dropped another 10 pounds in the last month. He, too, is now on oxygen. He is okay at rest, although the cough is still very bad, but his O2 drops immediately if he is active at all. We are waiting for the PET scan to be scheduled, and once we have the result we will decide where to go from here. I know exactly what you mean about whether trying to kill the cancer is worth it. Twelve months ago my husband had zero symptoms. Now, after 12 months of a combination of surgery, targeted radiation, chemo, and targeted drugs he is only very much worse off. To say it is discouraging would be a severe understatement. I'm happy to read of so many who have had amazing results and surpassed the odds, but I fear we are not destined to be among them. Link to comment Share on other sites More sharing options...
Lin wilki Posted October 22, 2020 Author Share Posted October 22, 2020 Right there with you Marie! Treatment has considerably messed me up. My life is so small now! i still hope I can make it to summer so I can see my son and kids from Arizona but I’ll be a shell of my former self. Don’t think there’s any miracles in the plan for me ill be praying for you and hubby Link to comment Share on other sites More sharing options...
MarieE Posted October 22, 2020 Share Posted October 22, 2020 1 hour ago, Lin wilki said: Right there with you Marie! Treatment has considerably messed me up. My life is so small now! i still hope I can make it to summer so I can see my son and kids from Arizona but I’ll be a shell of my former self. Don’t think there’s any miracles in the plan for me ill be praying for you and hubby Prayers being said for you as well. We have a young grandson we haven't seen in 11 months now; we had planned to visit this past spring. We miss our son, DIL and him more than anything. Thank goodness for Facetime, although of course it's not quite the same. Link to comment Share on other sites More sharing options...
Lin wilki Posted October 22, 2020 Author Share Posted October 22, 2020 This has been the worst year ever! Dealing with cancer and Covid. I sure hope you get to see you son and family soon! At least I have one married son with 2 small boys that are local. We got to spend outdoor time with them over summer. Now we’re closed in Link to comment Share on other sites More sharing options...
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