LilyMir Posted March 9, 2023 Share Posted March 9, 2023 Thanks RJN! Matter of fact I went to ER the other day to see a doctor about the slight abnormal urine test results I got (was ordered by my GP to investigate fatigue, ER said no worries- GP was away), the (female) ER physician was sympathetic to my sleep deprivation/fatigue issues. She advised that it may well be menopause related, not sleep apnea etc. I believe there is truth to that. I will keep seeking answers. Zopiclone worked for me during chemo, will see if it works again this week. I am sooooo sleepy and dead tired, exactly like you say, as if I am jet lagged after traveling 2-3 days without sleep ALL the time. Exhausting beyond belief. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 9, 2023 Author Share Posted March 9, 2023 Thanks lily and rikke, I think anything is worth a try this is a nightmare trying to stay asleep I'll try anything, As for the hair specialist people that was a no go, until I finish my treatment they can't do the system I want I can only have a full wig so not really for me, I just wondered if anyone has experienced a really sore mouth and lips during chemo Many thanks Justin x LouT, Tom Galli and Izzy 1 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 9, 2023 Share Posted March 9, 2023 Lily - I know many women who have become menopausal after chemo, even at very young ages, so it wouldn’t be surprising. For men, the picture is less clear and there is very little robust scientific evidence. However, it is well-establishment that older men can suffer from hormonal imbalances, and given the battering you have had, Justin, I think it is worth getting checked out. I really only started to feel normal/not sick again when my sleep became better, so as you say, explore all options. LilyMir, LouT and Justin1970 1 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 9, 2023 Share Posted March 9, 2023 8 hours ago, Justin1970 said: I just wondered if anyone has experienced a really sore mouth and lips during chemo Many thanks Justin x Justin, I had sore throat sensations with chemo, red tongue tip and general discomfort. Tagrisso gave me a full blown very painful sore. It was painful to chew or even speak as the movement rubbed it. Managed those with magic mouth that my oncologist prescribed. I think it has anti fungal and steroid in it. Some have anti bacterial and local anesthetic, but mine does not. I still use occasionally when my throat feels off, like last night! Ask for some from you care team. LouT and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 9, 2023 Author Share Posted March 9, 2023 Hi lily The care team have put me out some mouth stuff they said its oral thrush, it's really painful, it really is relentless isn't it always something to contend with, I hope it isn't 12 weeks of feeling like this lol, I just feel lousy, I'm trying catch up with my sleep through the day that seems to be working I've been asleep nearly all day lol, Take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 9, 2023 Share Posted March 9, 2023 I had the mouth thrush medication too, onc. told me to swallow it after gargling. I did not like it but also think I never had thrush (do you have a white sheet of stuff on tongue and inner cheek, throat? that indicates thrush as I was told- I interacted with doctors by phone so they never saw my mouth!). I had 'normal' red mouth but soreness, that's why the "magic wash" adds a few more ingredients to anti-fungal medication like steroids. Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted March 10, 2023 Share Posted March 10, 2023 FWIW, one of my docs suggested I add melatonin to my collection of pills. I take 5 mg slow-release at bedtime. Where I used to always wake up in the middle of the night, now I rarely do. You might see what your doc(s) think. Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2023 Author Share Posted March 10, 2023 Yes I do have the white sheet of stuff all over the inside of of my mouth throat tongue and my lips are really sore, I think they were right about the side effects peaking by day 4 or 5 I felt terrible last night but not quite as bad this morning, Last night I was all for giving up fighting this and stopping all the treatment, I only want a break and be able to do some stuff but I know I can't stop fighting my family and friends and myself, All the best Justin LouT, Tom Galli, Izzy and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 10, 2023 Share Posted March 10, 2023 Justin, I can only imagine how hard this is for you, but my hope (and yours no doubt) is to come out of this brutal treatment better and healthier. I have not had these treatments, but others have and as you've heard from them it is surely a rough road. My prayers go up for you to adapt to this treatment and to have positive results. Lou Tom Galli and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2023 Author Share Posted March 10, 2023 Thanks lou I do feel a lot better today they did say it would peak on the 4th or 5th day maybe that's what happened, Hopefully it will get easier as time goes on and this time it may work , many thanks Justin Izzy, RJN, Tom Galli and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 11, 2023 Author Share Posted March 11, 2023 Hi everyone I got it wrong they said it will peak on the 14th day then start to feel better for the last week of the cycle, I really feel rough I'm on carboplatin and pemetrexed has anyone else had this combination and did you manage to relieve any of the side effects many thanks in advance Justin Izzy, LilyMir and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
JuneK Posted March 12, 2023 Share Posted March 12, 2023 Hi Justin, Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it. Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down. Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin! Take care, June Tom Galli, Izzy, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 12, 2023 Share Posted March 12, 2023 What's your worst side effects Justin? For nausea, I was on Akynzeo which worked very well. I was also on Dexa. For constipation Sonokot, for pain Tramadol. For sleep occasional Ativan or Zopiclone. Hang in there! Tom Galli, LouT and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 12, 2023 Author Share Posted March 12, 2023 June thank you for your message atleast I'm not the only one who has been through this, all of what say is happening to me,I do have all the meds to help me through it, my mouth is really sore but I do have a treatment for that, hopefully it won't last the 14 days maybe it's just my body getting used to it, thank you so much for sharing your experience with me it really does help, Hope your well take care Justin x Tom Galli, LouT and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 12, 2023 Author Share Posted March 12, 2023 Hi lily I can't really pinpoint the worst side effects I just feel lousy,I don't like having no strength and not being able to use my right side so I can't even do physio hopefully I will get it back once this is over, thank you hope your well take care Justin x LilyMir, LouT, RJN and 2 others 5 Quote Link to comment Share on other sites More sharing options...
EMandM Posted March 19, 2023 Share Posted March 19, 2023 Hi Justin, that was my chemo combo. I totally get it. I kept a log of my symptoms after each cycle, because they followed the same pattern each time… and it kind of reassured me to read them back when I was going through it, so I knew I’d be out of it again soon (if that makes sense). I had gastro/tummy issues, fatigue, nose bleeds, but the think that bothered me most was a generally crappy feeling. It is difficult to explain… but I just felt like my brain and body just didn’t work properly. I couldn’t think/process much… and I also felt really down. On about Day 6 I felt my worst mood-wise. But by Day 12 I was back to normal again. It was really tough, but also really effective at killing the cancer cells. So hang on in there!! Gini x Tom Galli, Justin1970, RJN and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 23, 2023 Share Posted March 23, 2023 How are you feeling now Justin? Hope getting better! LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted March 23, 2023 Share Posted March 23, 2023 I’m wondering the same Justin…hope you are doing better. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 25, 2023 Author Share Posted March 25, 2023 Hi lily and pam I'm not doing so well really I had a 35 minute seizure and rushed to A&E yesterday, I wasn't expected to come out of it, the swelling has got worse the oncologist has put the steroids up, and she said that I've only possibly got weeks to live but I'm determined to prove her wrong. I do have a wheel chair coming, hopefully then I can get out and make some memories with my family, I hope that you both are doing well, I just hope that I can beat this for a little bit longer, I'm devastated because of all the fighting I've done, seems as though nothing has worked. All the best Justin x RJN, Tom Galli, LouT and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 25, 2023 Share Posted March 25, 2023 I am heartbroken reading this Justin, you have gone through so much and it is so unfair that you are not getting a break. Having said that, many on this forum told of stories that their doctors said they had XX time to live and they beat the odds by a large margin. Please focus on that and try to fight this monster disease one more round. Have they scanned your head and seen the cancer increase? Could your brain swelling just be from radiation after effects? I am wondering what basis your doctor had to give you such a prognosis... What about clinical trials, why aren't they searching for a trial that could fit your case? You/your family should push for that. We are all pulling for you Justin, hope things turn around somehow. Please do not hesitate to keep writing us, even if you are feeling depressed, this is what this forum is for. Justin1970, LouT and Tom Galli 2 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 25, 2023 Share Posted March 25, 2023 Oh Justin, I am really terribly sorry to hear this. You’ve had such a hard time of it, and I would have hoped you caught a break. But as Lily says, nothing is certain with this disease, and it is great to hear that you have the will to go out and enjoy your family. We are here for you and wishing you all the best, Rikke Justin1970, LouT and Tom Galli 2 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 25, 2023 Share Posted March 25, 2023 Justin, You remain in my prayers. Stay the course. Tom Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 25, 2023 Share Posted March 25, 2023 Justin, You are also in my prayers and you've been so brave so long. Life is always worth fighting for. Lily is correct, there are many stories here of people told to "get their affairs in order" who survived and continue to do so. Please explore any and all options available to reduce these symptoms and know we are all on your side. Lou Tom Galli and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 25, 2023 Share Posted March 25, 2023 I'm so sorry to hear this Justin but I agree with the others. So many people have been told they have weeks or months to live but they prove the doctors wrong. Do they know if the treatment is having any effect? Have you had any scans? How can they tell you that you have weeks if they don't know whether or not the treatment is working? Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted March 25, 2023 Share Posted March 25, 2023 Justin, Ugh, I am so sorry you are going through this, Justin. I understand why you would want to give up. At the same time, a woman in my local lung cancer group has been in the same boat as you for a long time now. It is very very hard, but today she sounded better than she has in months. She is planning a small birthday gathering for next week. Even though it will be short and she will need to rest immediately afterwards, she is getting a hum-dinger of a cake and looking forward to it. I hope there might be a small thing that brings you pleasure today. Thinking of you often, Karen LilyMir and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
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