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Tough time last couple of days


JamesB

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 I have had 4 rounds of chemo and this last one is kicking my butt. Stomach problems on toilet all day yesterday. Took meds for it helped somewhat. Have had no appetite and basically doing nutrition drinks. Just had nurse come out and give me an iv bag of nutrition which they will take away tomorrow morning at 6. Tried to wear a mask while she was here got all hot and nervous and stressed and couldn't wait for her to leave. Made me paniked.

My SO is here I don't know how he takes it.I don't know if I would have the patience. All I see is another round coming on Thursday and then 1 more after that.Had CT scan Thursday they said it takes 10 days to get results!  I feel like i'm in limbo land and can't seem to calm down without the help of meds,which I am realizing I really need to take so I don't flip all the way out.

Anyone else reach the end of their rope? I know I need to tie a knot and start climbing back up but I just feel so overwhelmed with everything.

Thanks for letting me vent.

James

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James,

My LC was treated with surgery only so I can't share any experience with chemo or its effects.  But I really do hear and sense the physical turmoil you are going through.  Others will surely jump in soon, perhaps with some advice based on personal experience.  I surely do understand the anxiety and even panic, that is a basic part of what we all share around this disease regardless of the treatment protocol.  You're correct to take any meds prescribed to help you thwart side effects as well as to keep you calmer.  My hope is that these symptoms will be diminishing.  I've heard others also talk about their loss of appetite and some went to ice cream while others ate different foods.  Ten years ago I had some serious surgery and my senses of taste and smell were affected where everything smelt and tasted like some terrible chemical.  I couldn't get anything past my nose or lips.  Finally, I came on grilled chicken and white rice.  However I was able to tolerate it I can't tell you, but it kept me going for weeks before I was able to eat again.  So please keep trying different foods.  Something will hit you and keep you going until you feel better.   I pray that will happen sooner rather than later.

Lou

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Hi James,

So sorry for how you are feeling right now. Yes, please tie a knot at the end of that proverbial rope and hang on tight. It will pass. Maybe not today or tomorrow, but it will pass. Take all the meds they offer, to help you calm down. I took them. Plus I tried yoga, meditation, reading, walking, watching TV. whatever I could to try to take my mind off of what my body was feeling! It is extremely grueling this chemo crap! I know. You can do it! Stay positive, focused and remind yourself that you can make it, one day at a time. My daughter was my support system, while I was going thru chemo and radiation, cheering me on when I just wanted to die!

But I didn't, I'm still here Yay! So, our family is much stronger than we think, and want us to be well once again, so they so everything they can to see us thru these dark days.

I wish you health and happiness, on your journey James

Namaste,

Roseann

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Hi James,

Hang in thereo! You can do this. Take whatever meds you need to for anxiety and diarrhea. My lung cancer needed surgery only, but I had an earlier unrelated cancer for which I had concurrent chemo and radiation--radiation field included my lower digestive system- plus additional chemo, so I hav some idea of what you are going through with chemo. I also had bouts of uncontrollable diarrhea and at times needed adult diapers to avoid disasters. Well they weren't really disasters, but they were certainly awful.I second Lou's suggestion of rice and chicken (mine was boiled or poached). Also white bread with nothing on it, crackers, and any other starchy, low fiber, low fat thing you can think of. Boost Soothe was not available at that time, or I would have tried it. It's a clear protien/carb drink that supposed to be to lerable for cancer patients for whom other foods/drinks are aversive.

For me, it was worth going through all this. I had a very aggressive stage 3 cancer and a "dismal prognosis" (quoting my medical record). My diagnosis was in 2011. I've been NED since the end of my treatment. I 'm sending positive thoughts that you'll be able to say the same in 9 years.

Bridget O

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Hi, James,

I'm so sorry this is so tough/painful for you right now. I've been extremely fortunate in the side effects department, so I can't claim to know exactly what you're going through, but I know enough folks here who have to believe you can do this. 

Please seek out and accept all the help and support you need right now--I, for one, will be cheering you on.

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Vent away, James!  This is the place.  I had that kind of time with Round 3 - severe constipation followed by the opposite, which turned out to be immune-mediated colitis from the Keytruda.  Just getting over all that (thank you, prednisone!) and facing Round 4 on Wednesday already.  If I can do this, you can do this - and I am a very high-anxiety person (just ask my husband)! 😁 

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Hi James: After my first round of Chemo I thought I reached my limit due to side effects. Then little by little things improved to a point where I did not have any. Then I went on maintenance with only Alimta and Keytruda  and unfortunately I started feeling sleepy and tired. You would think not taking Carboplatin eases the side effects. Bottom line I am learning to cope with side effects as they come and go and refuse to capitulate. I am determined that when I reach "the end of the rope"  a big sign reading N.E.D is waiting for me. I am hope to meet you there.

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Well put, Gary!  I am hoping to meet you both there, too! 😊  

BTW, has your oncologist said how long he/she is planning to continue the Alimta?  Mine originally said maintenance would be Keytruda only, but has since changed his mind and gone with both.  Didn't say for how long, though.  I am planning to ask on Wednesday.  No scans planned this trip, so expecting them on Dec 2 after this Round 4 has had a chance to do its work.  

Headed to Kings Bay, Georgia for the winter after leaving Duke on Thursday morning -- it will be a longer trip each time (6.5 hours instead of 4), but worth it.  Our condo is a much more relaxed lifestyle and warmer!  

Susan

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James, I'm glad you had a nurse come over. Nutrition and hydration are so important. Please be sure to tell your chemo nurse about your side effects, including anxiety. Take whatever prescriptions you need to. And if one prescription doesn't work, ask for something else. They also have meds to increase appetite. You don't want to lose weight. 

I got very sick from radiation and chemo, and it can take you right to the brink. But there is daylight ahead, keep believing in that. I know it's hard to see now, but the day will come when you start to feel better. 

One of the principles of caregiving is to not stress your patient out. So while your SO is most likely worried about you, just be happy he's there to support you and rely on him. Your focus is to get better.

Hang in there. If I overcame everything and survived, you can too. 

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Hi James,

I am sorry you're having these side effect.  Hang in there because it will pass!  I recognize it can be hard - so hard that it can be discouraging.  I seemed to be able to manage the first 4 with side effects - felt sick days 4-8 after that I gradually got my energy back and even played a little tennis between treatments.  The carbo was dropped and I thought the same thing as Gary...it would be so much easier - but then the fatigue set in big time.  After my 9th treatment I notified my oncologist that I didn't think I could manage it any longer.  I am taking 2 weeks off and will return for treatment (Keytruda only) a week from Tuesday.  Still, I feel tired and I couldn't play tennis now - but I do go for long walks.   I guess I thought the fatigue would all go away after the Carboplatin was dropped.  I should also mention that I was told I was  in REMISSION after I completed the 4 weeks of Carbo, Alimta and Keytruda.  So hang in there!

Best,

Deb

 

 

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I thought the same thing till I heard from you and Gary!  Actually just taping off the high-dose steroids for my Keytruda-related colitis and have really felt the fatigue the last two afternoons.  I *have* been doing more because I got so far behind during the previous 2 weeks AND have to get ready for the move south.  I'm hoping that's the reason but suspect it's not.  

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I forgot to mention that after the triplet for 4 treatments - the plan was to stay on Alimta and Keytruda - I did that for 5 treatments, but then the side effects became more than I felt I could handle.  That's when I called and asked for a break.  My oncologist was fine with that, and I am taking the 2 weeks off.  When I return for treatment, he said I would only get Keytruda.  I'm not sure if he's planning to add the Alimta back in because originally he said I'd go off it in October, but then he said he was recommending to keep it Alimta until December.  I'm not certain how we'll move forward.

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13 minutes ago, Judy M2 said:

James, I'm glad you had a nurse come over. Nutrition and hydration are so important. 

Judy is right!  Especially with diarrhea, it's hard to stay hydrated and dehydration can make you feel a lot worse.  My oncologist recommended Gatorade - I think that, like Pedialyte, that keeps up your electrolytes, which is critical.  

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14 minutes ago, Sabacat said:

Well put, Gary!  I am hoping to meet you both there, too! 😊  

BTW, has your oncologist said how long he/she is planning to continue the Alimta?  Mine originally said maintenance would be Keytruda only, but has since changed his mind and gone with both.  Didn't say for how long, though.  I am planning to ask on Wednesday.  No scans planned this trip, so expecting them on Dec 2 after this Round 4 has had a chance to do its work.  

Headed to Kings Bay, Georgia for the winter after leaving Duke on Thursday morning -- it will be a longer trip each time (6.5 hours instead of 4), but worth it.  Our condo is a much more relaxed lifestyle and warmer!  

Susan

Hi Susan: My oncologist did not commit to the exact number of times because he wants to see how much tumor is still present.  My guess is that decision will be made by the tumor board instead. My next scan is on the 19th so I will make sure to ask. I love the area of Kings Bay, Georgia especially in the summer. I once had property on lake Seminole Georgia. Have fun in Kings Bay and I hope the drive will be manageable.

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You're probably right.  In which case, I won't get an answer until after the scans on 12/2.   We used to have a lot on a canal between Lake Orange and Lochloosa years ago.  Thought that was where we would retire, but that was during Andy's 'fishing phase.' 😊  Once he returned to golf (and got me hooked) all our plans changed.  With two Siamese cats to transfer twice a year, we decided not to go all the way to Florida and found the place at Kings Bay.  Andy used to sell paper chemicals to the mill there before it closed down, so he was familiar with the area.  

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JamesB.

I'll make a deal with you. You vent to me and I will vent to you!

Me first....I feel like crap but get my nextt scan next week so will be patient. Actually I hope they find something because I should be feeling good. Been three months since treatment ended.

Wish you the best

Peace

Tom

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13 hours ago, LouT said:

James,

My LC was treated with surgery only so I can't share any experience with chemo or its effects.  But I really do hear and sense the physical turmoil you are going through.  Others will surely jump in soon, perhaps with some advice based on personal experience.  I surely do understand the anxiety and even panic, that is a basic part of what we all share around this disease regardless of the treatment protocol.  You're correct to take any meds prescribed to help you thwart side effects as well as to keep you calmer.  My hope is that these symptoms will be diminishing.  I've heard others also talk about their loss of appetite and some went to ice cream while others ate different foods.  Ten years ago I had some serious surgery and my senses of taste and smell were affected where everything smelt and tasted like some terrible chemical.  I couldn't get anything past my nose or lips.  Finally, I came on grilled chicken and white rice.  However I was able to tolerate it I can't tell you, but it kept me going for weeks before I was able to eat again.  So please keep trying different foods.  Something will hit you and keep you going until you feel better.   I pray that will happen sooner rather than later.

Lou

Lou thank you so much for your encouragement and support.It really means a lot to me. Take the meds. I guess I was looking at my self as weak to take something anxiety reducing when it's what I really need. Covid is on the uptick here in Sweden and that doesn't help either. I will keep searching for the elusive food. 

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12 hours ago, Sillycat1957 said:

Hi James,

So sorry for how you are feeling right now. Yes, please tie a knot at the end of that proverbial rope and hang on tight. It will pass. Maybe not today or tomorrow, but it will pass. Take all the meds they offer, to help you calm down. I took them. Plus I tried yoga, meditation, reading, walking, watching TV. whatever I could to try to take my mind off of what my body was feeling! It is extremely grueling this chemo crap! I know. You can do it! Stay positive, focused and remind yourself that you can make it, one day at a time. My daughter was my support system, while I was going thru chemo and radiation, cheering me on when I just wanted to die!

But I didn't, I'm still here Yay! So, our family is much stronger than we think, and want us to be well once again, so they so everything they can to see us thru these dark days.

I wish you health and happiness, on your journey James

Namaste,

Roseann

Roseann,

Your support and encouragement means so much to me. I am going to try to see if I can clean up the garden a bit in my building. I live in a flat but I have been the one who does the garden. I also haven't meditated in about a week.Something I have done for over 30 years.  This chemo pushed me off the wagon but I am getting back on .Hugs to you

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11 hours ago, BridgetO said:

Hi James,

Hang in thereo! You can do this. Take whatever meds you need to for anxiety and diarrhea. My lung cancer needed surgery only, but I had an earlier unrelated cancer for which I had concurrent chemo and radiation--radiation field included my lower digestive system- plus additional chemo, so I hav some idea of what you are going through with chemo. I also had bouts of uncontrollable diarrhea and at times needed adult diapers to avoid disasters. Well they weren't really disasters, but they were certainly awful.I second Lou's suggestion of rice and chicken (mine was boiled or poached). Also white bread with nothing on it, crackers, and any other starchy, low fiber, low fat thing you can think of. Boost Soothe was not available at that time, or I would have tried it. It's a clear protien/carb drink that supposed to be to lerable for cancer patients for whom other foods/drinks are aversive.

For me, it was worth going through all this. I had a very aggressive stage 3 cancer and a "dismal prognosis" (quoting my medical record). My diagnosis was in 2011. I've been NED since the end of my treatment. I 'm sending positive thoughts that you'll be able to say the same in 9 years.

Bridget O

BridgetO,

Thank you so much especially in the honesty in what you shared with me. I will try the white bread and keep in mind  that it is all worth it. I'm so glad that you are doing well and are sharing your info and support with other people. Hugs.

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14 hours ago, LexieCat said:

Hi, James,

I'm so sorry this is so tough/painful for you right now. I've been extremely fortunate in the side effects department, so I can't claim to know exactly what you're going through, but I know enough folks here who have to believe you can do this. 

Please seek out and accept all the help and support you need right now--I, for one, will be cheering you on.

Thanks so much,your posts are alwaays so informative and inspiring. What a great bunch of people.

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Hi Susan: Switching from fishing to golfing I can understand but  where do you find the time for two Siamese cats ? I fished a lot as well and gave it up when I got older. Cancer changes a lot of things in our lives. I sold my house in Orlando where I lived for over 40 years and moved to Tampa near Moffitt Cancer Center where I receive treatment. I gave up almost one acre of land where I had a beautiful garden and moved to a townhome with zero maintenance. Side effects do not come just from chemo.

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Hey Gary - We had two for many years (actually, 3 pair over 47 years) but our last gal passed away a little over a year ago just before her 20th birthday.  We had plans for overseas travel (cancelled by Covid) and decided to consider not adopting again.  After my diagnosis in July, that turned out to have been a good decision because dealing with travel every 3 weeks would have been a nightmare with cats.  Miss them terribly, especially my Saba girl.  We have over an acre on the mountain top in NC, and I am probably going to have to resort to hiring some help with that next spring.  

Susan 

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