LexieCat Posted November 20, 2020 Share Posted November 20, 2020 Sitting here in the chair for what I hope is my last dose of carboplatin, after which I will switch to maintenance on Alimta and Keytruda. Asked about the next scan, and was happy to learn I will be getting another scan and visit with oncologist before they switch me to maintenance therapy. NP says doses of Alimta and Keytruda will be the same; they will just eliminate the Carboplatin. I will be getting the Zometa (for bone met/s) every 90 days by infusion, starting today. She tells me the most dangerous potential side effect of Zometa to watch for is jaw necrosis, so I need to be alert for jaw/dental pain. She recommended I start back with my dental visits—these are just for cleanings and X-rays, because I have full-mouth dental implants. And I will get my scans and visit the week of 12/8, before my daughter heads back home—which I think will make us both feel better about her going back home. Link to comment Share on other sites More sharing options...
Sabacat Posted November 20, 2020 Share Posted November 20, 2020 Sounds like it's all under control! 😊 Link to comment Share on other sites More sharing options...
LexieCat Posted November 20, 2020 Author Share Posted November 20, 2020 Yeah, we all know how unpleasant uncertainty is. Of course, I will experience uncertainty to some degree until I get my next scan results. Still, it's reassuring that "the plan" is what I was expecting, not what it sounded like a couple of days ago. And the scheduler knocked herself out to get my visit scheduled before my daughter leaves--the doc's schedule looked full but she said she'd see what she can do and she personally came to find me in the infusion room to tell me she successfully got it on the schedule. Oh, and I told her I loved her sweatshirt she was wearing. It said, "I want it all. And I want it DELIVERED." Link to comment Share on other sites More sharing options...
MBinOregon Posted November 20, 2020 Share Posted November 20, 2020 LexiCat, MB 😁 Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 20, 2020 Share Posted November 20, 2020 I'm taking all of this as good news. Are you having any side effects from the carboplatin? Link to comment Share on other sites More sharing options...
LexieCat Posted November 20, 2020 Author Share Posted November 20, 2020 Surprisingly few. I wind up needing to take 3-4 doses of anti nausea drugs each cycle--usually the first few days. When I was taking those meds more often I had an issue with severe constipation, which I can now head off by taking a nightly dose of Miralax 2-3 days before and after infusion. Still got all my hair (so unlike you, I didn't have to tip my oncologist for his styling services)--it hasn't even thinned. The only effects that have really troubled me are fatigue and brain fog, as well as a bit of increased neuropathy (I've had mild peripheral neuropathy for over 15 years--cause unknown, despite a bunch of neuro testing). My NP is hopeful that that will decrease again once I'm off the carbo. I've had a great appetite, no issues with my sense of taste, and have gained over 10 pounds. Which I don't want to keep as a souvenir, lol, although I should be grateful I have a good appetite. Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 21, 2020 Share Posted November 21, 2020 Ah yes, chemo brain. That was one side effect I was really happy to see end. I am happy that you are doing well with this treatment. Link to comment Share on other sites More sharing options...
LouT Posted November 22, 2020 Share Posted November 22, 2020 Lexie, So glad you're coming to the end of the treatment and your descriptions in your posts surely have helped others to better cope with that treatment protocol. I can't wait to hear about clear scans and then stability...fingers and toes crossed. Lou Link to comment Share on other sites More sharing options...
JamesB Posted November 23, 2020 Share Posted November 23, 2020 Oh no! I just saw this about the bone mets.I am suspicious about mine as I saw something on Patient portal that didn't look good.Trying not to panic but hope to speak to the doc today. I just want to say you are one tough cookie and an inspiration.Thanks! Link to comment Share on other sites More sharing options...
LexieCat Posted November 23, 2020 Author Share Posted November 23, 2020 Are you getting any special treatment for yours, James? They didn't start me on Z right away, since I already had a supply of Boniva (for the next 3 months), to strengthen my bones due to pre-existing osteoporosis. When I fractured my clavicle and there was some possibility at least that it might have fractured due to an undetected bone met, I convinced the docs to start the Z now in lieu of the Boniva. Right now, my oncologist isn't concerned about the bone met/s--even if there is one on the clavicle. He says everything is responding well to the chemo/immunotherapy and there's no reason to think it/they won't be adequately treated with the systemic drugs. The only bone met we're fairly sure about is the one on my sacrum, which lit up during the PET scan and was very small--about 7 mm. Link to comment Share on other sites More sharing options...
JamesB Posted November 25, 2020 Share Posted November 25, 2020 On 11/23/2020 at 12:28 PM, LexieCat said: Are you getting any special treatment for yours, James? They didn't start me on Z right away, since I already had a supply of Boniva (for the next 3 months), to strengthen my bones due to pre-existing osteoporosis. When I fractured my clavicle and there was some possibility at least that it might have fractured due to an undetected bone met, I convinced the docs to start the Z now in lieu of the Boniva. Right now, my oncologist isn't concerned about the bone met/s--even if there is one on the clavicle. He says everything is responding well to the chemo/immunotherapy and there's no reason to think it/they won't be adequately treated with the systemic drugs. The only bone met we're fairly sure about is the one on my sacrum, which lit up during the PET scan and was very small--about 7 mm. Sorry for the slow response. I didn't know I had any bone mets until I was snooping round on the patient portal. The thing here at Karolinska Is I have so many doctors which can be good and bad of course. I was told I had no mets at my first session so was in shock this weekend when I found this. I think we might be similar in the doc's approach. I saw the doc on Tuesday and she said that my most recent scan while I was in hospital last week showed great improvement and on the bone mets.I am on the triplet and they are very happy with the shrinkage taking place and that these drugs are taking care of the mets too. Good news is they are so happy with this that they are taking me off the other 2 drugs and putting me on Immunosupessive as maintenance every 3 weeks for 2 years or how long it works and I can tolerate it. Other good news is >I get a 3 weeks to heal before they start with this as I was in the hospital for 10 days from the side effects. Link to comment Share on other sites More sharing options...
LexieCat Posted November 25, 2020 Author Share Posted November 25, 2020 Great--that sounds very good. My doc isn't even worried about the bone met(s). (I am, but he knows a lot more about it than I do.) Part of me wishes there were an endpoint in sight (my doc intends to continue me on the Alimta and Keytruda basically forever, unless it quits working). But hopefully, eliminating the Carbo should make it all more tolerable. Just have to wait & see, I guess. Link to comment Share on other sites More sharing options...
GaryG Posted November 25, 2020 Share Posted November 25, 2020 Lexie: I hope eliminating the Carboplatin works better for you. Unfortunately it did not for me. I had an infusion of Alimta and Keytruda on Thursday. The following Sunday and like a clock I went into automatic sleeping mode. I slept all day Sunday, Monday, Tuesday and to less extend today. This was the first time I had infusion using a newly installed port on my left side. The port area and all the way to the right is itchy and uncomfortable. I also lost my appetite. Lucky for me those are the only new side effects since I discontinued Carboplatin 3 weeks ago. Last time it took at least one week to return to normal so there is hope. Your outcome could be different but apparently less is not better. Good luck! Link to comment Share on other sites More sharing options...
LexieCat Posted November 25, 2020 Author Share Posted November 25, 2020 Well, shoot, Gary, that's gotta be disappointing. I did have a longer bout of fatigue this time (fourth round with Carbo) than previously. Before, Day 4 knocked me out and I was always much better the next day. This time, I had two full days of being zonked out and sleeping much of the day. This morning, though (Day 6), I woke up feeling MUCH more energetic. I was able to get my food/dishes/etc. out and ready for tomorrow's cooking. I'm not being terribly ambitious--just roasting a turkey breast and making three simple side-dishes. Still, I figured best to drag out the implements of destruction today to spare myself some energy tomorrow. Oh, and I hope your port area feels better soon. Every time I get an infusion I'm grateful for mine--it's so great not to have all the bruising, etc., that goes with the often-futile attempts to get my veins! Link to comment Share on other sites More sharing options...
Judy M2 Posted November 26, 2020 Share Posted November 26, 2020 @GaryG, is your skin still bandaged? It could be an allergic reaction to the adhesive on the Steri-Strips (which happened to me). The itching was unbearable. I couldn't wait to take them off. When they came off, I used Benadryl anti-itch cream, which helped. I hope you feel better soon. Link to comment Share on other sites More sharing options...
LexieCat Posted November 26, 2020 Author Share Posted November 26, 2020 Ooh, you know what, Judy may be right about that. Now that I think about it, I had some pretty uncomfortable itching while my port incision was healing, but it went away as it healed. Plus, I would assume that you have a big bandage over the infusion needle, and that usually tears at my skin when it's removed. As far as I'm concerned, it still beats the ordeal of getting stuck in the arm, but it may take some adjustment. It seems easier for me each time. Link to comment Share on other sites More sharing options...
GaryG Posted November 26, 2020 Share Posted November 26, 2020 Judy: Thank you for the advise. I will need to get some Benadryl anti-itch cream. Hopefully it will help. Link to comment Share on other sites More sharing options...
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