LilyMir Posted June 6, 2022 Share Posted June 6, 2022 A little update dear friends. June 1 was my first infusion, Cesplatin and Vinorelbine. The first night my pulse went so high at home (160!) we had to call an ambulance. All tests at ER were OK but they gave me fluids and nausea meds. Today was horrendous, I felt like the worst I felt in my life, entire body painful and I almost could not move, got thrush in mouth, constipation, don't feel like eating... After trying more hydration, I got a bit better but still feeling so so down. Also my ears are acting up all day, pressured and tinnitus already is here from first dose. I am having second thoughts about chemo. Should I ask for reduced dose? To go on Tagrisso directly? I am so so exhausted, how can I take this for 3 months?! I am so deflated tonight! ChiMama, Justin1970 and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted June 6, 2022 Share Posted June 6, 2022 Hi lily I had the same combination of chemo as you are having alongside radiotherapy, my first infusion wasn't great either and I experienced all the symptoms you have but after a couple of days it does honestly get easier, try and stick with it if you can my lung tumor and lymph nodes have significantly shrunk and I feel quite well now, All the best Take care Justin x Tom Galli, LilyMir and Izzy 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted June 6, 2022 Share Posted June 6, 2022 Lilymir, I'm so sorry to hear about the side-effects you are experiencing. Unlike Justin I have not had chemo, so I can't speak from experience, I would normally recommend posting in the "Chemotherapy" section of our forums but I see that you already are taking advantage of that. The only thing I've heard people say is 1. Let your doctor know about all the side-effects so that they can offer solutions to many of the symptoms. 2. Consider adding a "Palliative Care" person to your medical team. They are particularly focused on helping patients get through treatments that are difficult. In the meantime my hope is that these symptoms ease up for you and that the treatment does what it is meant to do. Lou LilyMir and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted June 6, 2022 Share Posted June 6, 2022 Lily, Stay the course... Tom LilyMir, Justin1970 and LouT 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted June 6, 2022 Author Share Posted June 6, 2022 Hi all, another miserable night. Terrible all over pain and I became so faint and almost lost consciousness with very slow pulse this time around. Ended up in ER again. They said my tests are good except liver acting up and it must be harsh reactions to chemo causing all this. I have to talk to my oncologist. This is beyond tough. Thanks for your thoughts. Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted June 6, 2022 Share Posted June 6, 2022 I'm sorry you're having such harsh side effects. I wonder why they aren't switching you to Tagrisso directly? Bear in mind that Tag can affect the liver too and can cause its own side effects. But from my own experience, Tag is much easier than chemo. I agree with Lou that palliative care would be a good addition to your care team. Take care. LouT, LilyMir, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 6, 2022 Share Posted June 6, 2022 Oh dear, this sounds very hard. Sending strength and hope that your oncologist will have solid suggestions. Justin1970, LilyMir, Tom Galli and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted June 20, 2022 Share Posted June 20, 2022 Hi lily hang in there it will get better take care Justin x LilyMir, LouT, Tom Galli and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted June 21, 2022 Author Share Posted June 21, 2022 21 hours ago, Justin1970 said: Hi lily hang in there it will get better take care Justin x Thanks a lot Justin! Today I had my followup appointment with my oncologist (she never once got back to me when I called multiple times during my 3 weeks of troubles after first infusion). Instead of reassuring me, the oncologist sent her resident to talk to me, then came for a few minutes and insensitively stood there with no mask near the open door, told me she is changing my regimen to Carboplatin instead of Cisplatin, and 3/4 the dose of Vinorelrine. The oncologist scared the hell out of me telling me that all my symptoms indicate toxicity and can be life threatening, that more of the same will leave me deaf or even dead. She also said my white blood cells are low and they are pushing my 2nd cycle by a week. I was so shaken and still am. I don't know what they teach at med school but my gosh what a disaster of bedside manners. I don't know what to do and started crying like I did when I was first diagnosed when I got home. I can't stop crying. Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted June 21, 2022 Share Posted June 21, 2022 Lily, I wasn't there with you so I can't swear for how the oncologist came across, but I trust your narrative. Based on what you said I believe it may be time for you to have a straight talk with your oncologist and/or look for a new one. It's possible that she is overworked, uncomfortable with patients (it happens) or just not qualified to deal well with cancer patients. Regardless of the reason you need people on your medical team that you are comfortable with and confident in. Please speak with your PCP (primary care physician) and see if you can get another oncologist. I'm not familiar enough with the Canadian medical system to know how that works, but you do deserve better. This medical team is your personal group responsible to restore you to health, make sure you have all the best players. Lou ChiMama, Justin1970, LilyMir and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted June 22, 2022 Share Posted June 22, 2022 Lily - I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did. Keep us posted. Justin1970, Tom Galli, LilyMir and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 22, 2022 Share Posted June 22, 2022 Sending hugs, Lily. I had carbo and had a bit of nausea, but nothing unmanageable, or even noticeable after some meds. Karen LouT, Justin1970 and LilyMir 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted June 23, 2022 Author Share Posted June 23, 2022 Thanks everyone for the very kind support and advice, it means so much to me. I did ask for change in oncologist, and it seems I will have a new one next week! Now I hope it will turn out a better experience than that with my first oncologist! I am now resting, i.e., delaying this week's chemo. My white blood cells are quite low and my neutrophils are almost wiped out. I am terrified of having an infection. Anyone had neutropenia? It seems dangerous but as you all know, my oncologist never bothered to say a word of advice or reassurance (or even wear a mask) . I am now dreading next week's infusion... I hear Carboplatin is even worse in affecting the blood count. This lung cancer nightmare keeps on giving, eh? Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted June 23, 2022 Share Posted June 23, 2022 Lily, can they give you Neulasta? That's often used when WBC/neutrophils are low. I also had carbo (and taxol) and lost my hair but otherwise was manageable. Hope your new oncologist is a better fit. LilyMir, Tom Galli, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 28, 2022 Share Posted June 28, 2022 Hi Lily. So sorry that the chemo is hitting you so hard. I was supposed to start with cisplatin but was switched to carboplatin because my kidney values were slightly increased. My only side effect with the carbo was hair loss like Susan. My white count did decrease but I think all chemo drugs will do that. Praying that this second round goes smoothly for you. LilyMir, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted June 28, 2022 Share Posted June 28, 2022 Hi lily I'm really sorry your having such a rough time, when I had my chemotherapy the blood cells were low I ended up having a blood infusion which helped a lot I think it's a very common problem, I really hope everything starts to get better for you, this cancer is certainly a nightmare your right All the best Take care Justin x LilyMir, LouT and Izzy 3 Quote Link to comment Share on other sites More sharing options...
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