IBC lounge: roll call, support and just a good place to hang out
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Discussion with MO today about whether or not to try a change of treatment since Taxol isn't working yet. I've only had one 3-week dose so far but we were both hoping for immediate response like I had last time, instead things are steadily declining. There's still a chance that it's due to tumor flare, but of course the big concern is resistance, and as all of you know there isn't a lot of time to play games with IBC. He was inclined to change now before things got any worse, but that would mean cancelling today's treatment until we got approval for new treatment and then got the drug in house. In the end we decided to do one more dose as long as I promised to let him know immediately if things continue downhill so he can get everything in place for a treatment change ASAP. Not even sure what chemo we would try next.
He also wrote prescription for milder pain reliever so I don't have to go back on morphine and/or fentanyl. He chose Percocet, still an opioid but a milder one combined with Tylenol, I'll only take it when the pain starts getting on my nerves. Hopefully this will make me less cranky but not as foggy-headed as morphine makes me. This is the first time I've been negatively affected by the crackdown on opioids, my MO prescribed 120 pills for 30 days but insurance company would only cover 84 pills for 27 days (which is a weird number when you do the math - 3.11 pills per day, as opposed to the 4 per day dosage my MO prescribed). I could pay for the rest out of pocket but I told pharmacist to just fill the 84 since I only intend to take it when the pain is really bothering me. In hindsight I should've paid to have it all filled because it's not a bad drug to have on hand.
How is everyone else doing? What are your holiday plans?
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Lori, what a bummer. The taxol just might kick in for tumor diminution, I certainly hope so. What is the new drug and when will it be in house?
Pain relief is an art and you are crrtainly an expert in painmanagement. Percocet is a good drug and will surely work for the pain. I like your policy of using minimum doses, that gives you leeway for later. Yes, stock the opioids, restrictions aren’t meant for people in your state. Best wishes.
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LoriCA I am rooting for you and am also anxious to learn what they will come up with for you for a new treatment. Perhaps Halaven ? I share your philosophy of pain relief. Very best wishes.
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I got so caught up in discussing the pros and cons of trying one more dose of Taxol that I didn't even ask what might be next. I didn't want to cancel yesterday's infusion because the H&P has been working so well on my bones and liver and I already had one short break from it. I have until tomorrow to let him know if symptoms continue to get worse, not much time at all (especially since I'll be coasting on pre-meds until then), then he is out of the office for two weeks for the holidays. That gives us a week before my next scheduled infusion to decide what's next if the Taxol doesn't work. I'm just going to think positively until January. Having the percocet is a big help, at least I won't have the pain dragging me down mentally. He said that he realizes I'm the type who doesn't like to complain and tries to tough things out, but that he can't help me if I don't tell him what's going on and he was really glad that I was the one who asked for help with the pain this time.
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Hi Lori, I just wanted to jump in here to tell you that for me, Kadcyla has been a great follow-on to Taxol. I have a similar IBC profile to you with the HER2+, grade 3, liver, bone mets and skin at the beginning. But I'm both ER/PR - That said, I also had an amazing initial response to Taxol with HP. I had a complete response but my NED only lasted a few months on HP alone before bone progression. So, more Taxol (and then Abraxane) and another good response but lots of neuropathy. So, then on to Kadcyla (TDM-1). I've just had my 40th Kadcyla (every 3 weeks means more than 2 years!). I've had minor progressions along the way in my spine and then my psoas muscle of all places, which were both successfully knocked back with SBRT, allowing me to continue my run on Kadcyla. Of course, I also get Zometa every three months but the side effects of all this have been very manageable (dare I say, minimal!) thus far. Maybe Kadcyla would work well for you too!
Happy holidays to everyone! -Margarita
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Thanks Margarita, we have talked about moving to Kadcyla next for maintenance once we get things under control again. I'm glad to hear that you've had positive results with it and especially that you find the SEs manageable . My mets have been responding so well to H&P that this setback has been very disappointing. I'm hopeful that Kadcyla is going to be the best of both worlds for me since it's a combination of Herceptin and emtansine, hopefully the emtansine is enough to keep the IBC from recurring so quickly again.
Happy Holidays!
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Thanks everyone for keeping the posts going here this year. To the Stage IV folks, especially, I understand how often it must be hard to post, but your contributions are building a storehouse of knowledge with immense value.
Happy 2019 to all of us. Let's hope it's a good one.
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Happy Holidays Traveltext and all of our fellow IBCers. Christmas here was quiet with just the two of us, but it was special and I really enjoyed it. We were hoping to keep our tradition of camping for New Year, but it's been very cold with extremely strong winds this week and I decided I'd rather stay warm at home than huddled inside a tent hahaha!! Chemo makes me a wimp. Hopefully a break in the weather soon so I can get back out in nature, here in SoCal we can go from sub-freezing to 80F in the blink of an eye this time of year.
Wishing all of you nothing but good things for the new year!
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Happy New Years every one :-) Nothing to report over here except a desire to sleeeeeeep and sleeeeeeeeep. As you wrote, Lorica, chemo makes me a wimp, too, nothing seems as wonderful than staying warm at home, preferably under the quilt and several blankets with a good book, or even better, a deep dream ! See you all after the New Year scrapes around the bend.
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Happy New Year! My only wish is health for all of us.
Christmas was quiet, with the family. For New Year's eve we had dinner on a boat and saw a great firework show. Two more days vacation before I go back to work.
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Hey Moreshoes ! Howdy all. Well folks i had a scan today, and well ... it seems the thing has gone into the lungs, and if I am reading this correctly into the (french) "épicarde" == the internal layer of the visceral layer of the sack containing the heart (the pericardium) (!!) That sounds scary all of a sudden. Well I am probably not supposed to have seen this, and the oncologist will explain it all to me on Thursday. I'm feeling kind of hmmm about this; a little scared, but the feeling hasn't totally destroyed my naturally good mood ... yet. Will keep you all posted. It occurred to me that I had several months without treatment which had to have led to all hell breaking loose, but this doesn't tell us if it is worsening or bettering.
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MoreShoes, always nice to hear from you. That sounds like a relaxing Christmas. The best kind!
Amarantha, also nice to hear from you. Since you've been several months without treatment, I'd expect that your cancer hasn't taken a break also. The heart and lungs are often affected together, but I wouldn't hazard a guess as to the severity of your report. Best leave this to the oncologist who will likely have a treatment plan for you. Thinking of you on Thursday.
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Well damn Amarantha, I am so sorry to hear that. I hope you are at least feeling okay physically? Is the progression causing any symptoms? Do keep us posted please.
Taxol isn't working for me this time, doesn't even seem to be slowing it down, I'm scheduled to have my next infusion tomorrow but I'm currently sitting here waiting for my MO to call me back to see what we're going to try next.
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Did you hear from your MO Lori?
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Met with him this morning, he wanted me to come in for labs and vitals anyway. He wants a new scan to verify that the taxol isn't working before we change treatment. My last PET was only 7-8 weeks ago, so it might have to be a CAT this time, depending on insurance approval. My imaging center always gets me in quickly so scan will probably be done before the end of the week, then I'll meet with him a day or two later to discuss. Meanwhile I'm in a holding pattern with no treatment (he cancelled today's infusion), but hopefully it won't last too long. At least I still have my hair, if whatever we choose next doesn't cause hair loss I might actually get to keep it.
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Amarantha, wishing you lots of strength for Thursday and the waiting till then. The MO would have answers.
Lori, that sucks. Hopefully there's a different treatment if indeed the Taxol doesn't work.
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Thanks MoreShoes, he said I still have plenty of options but when I asked he wasn't ready to commit to which one he would suggest trying next, only that it wouldn't be a taxane. He did mention capecitabine (Xeloda) as a strong possibility, which would get me off IV chemo, but in my head I wonder if an oral chemo is strong enough for IBC with a high Ki67. And I'm not very excited about the side effects from Xeloda. I was hoping to move to Kadcyla.
I'm starting to get some surface numbness and he said that he's concerned that even if tumor shrinks it might shrink right into the nerve bundle. Having gone through nerve involvement once already I really dread having it happen again. I really hate IBC.
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LoriCA I certainly understand hating IBC. Please may they find you something easy to tolerate that works. Taxol never worked on me by the way. Hence Halaven being a god-send.
Traveltext, LoriCA, Moreshoes, well, I saw my oncologist today, and she was quite reassuring. She suspects that the lung business might be residue from my recent cold, I am not out of breath or anything, so ... She also suspects that what shows up as mess in the pericardium may actually be nearby lymph nodes. She said my markers are very good so the majoration doesn't make much sense. (Since when are my markers useful ? Hmmm.) We will do another scan in two months to see if things are going in the worsening or the bettering direction with current treatment. Meawhile, I will have my PAC replaced (and moved higher toward the shoulder) tomorrow by my favorite surgeon instead of by the intern butchers in the cancer ward who caused me such grief in 2014. My surgeon might make me suffer, but if he makes me suffer at least I enjoy knowing it was this lovely man who did it, ha.
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That sounds positive Amarantha. Why are you having your PAC moved, are the skin mets getting too close to it? Glad you could get your favorite surgeon, hope all goes well for you tomorrow.
Taxol worked amazingly well for me the first time around, that's why my MO wanted to try it first even though we both understood there was a risk that I had become tolerant.
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Hi LoriCA, the skin mets got too close, but mainly the PAC stopped working altogether after the mastectomy, neither in nor out. I survived the surgery today ! I am sooooo glad I got my favorite surgeon to do it, I totally trust him, and he did not hurt me one bit, it was intense physical work for him pushing and pulling that tube up my neck, anyhow he is so popular with the pretty nurses, and they were there making me feel wonderful. After the local anaesthetic wore off it hurt like hell, so I took a double dose of tramadol (a wonderful codeine thing) and now I love everybody. Enjoying watching Outlander on Netflix and waiting for the pain to go away !
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You've had your PAC for a while now I'm guessing, based on your history? Ugh, I don't think I could go through that with only local anesthesia. I had twilight anesthesia when I had my Power Port put in, much easier for my stress level because I wasn't happy knowing they were going to cut into my jugular vein and carotid artery haha! Hope it heals well Amarantha and that the pain calms down soon.
PET/CT scheduled for Monday with follow-up appt with MO for Tuesday, backup on Thursday in case results aren't ready yet.
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wonderful news Amarantha on getting PAC done by your preferred surgeon. It helps if you can pick who you like.
Good luck on your scan Lori! Praying for good results
Had my first Abraxane infusion today and so far not so bad but I also get herceptin and Zometa So I’m sure illl have body aches this weekend.
I also have MO dr check my wound and they still don’t want to say it’s skin Mets...or wouldn’t confirm since it’s never biopsied. But they gave me prescription for some cream to help. It’s oozing and smells really bad. So I hope that cream helps!
I have really bad Lymphedema on my left arm So it’s been hard to do stuff I have typing with one hand.
Hope everyone will have a great weekend
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Welcome back Minnie. Can they do a punch biopsy to confirm skin mets?
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I was scheduled for a biopsy but never made it because I had to go to the ER the same day due to fluid on the lungs which kept me in the hospital for days and about 3 more ER visits. MO said it's not that important right now since I will be getting chemo and will be treated systematically. I can still ask though since the request was for the needle core biopsy not skin punch.
Thanks
M
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Well thank goodness Minnie that you will be getting systemic treatment. I pray it will clear up your skin.
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Hello, friends, sorry for the long hiatus. We feel like we squeezed through the knothole and popped out the other side after the chaos of the household move from California to Colorado, and then the holidays, traveling to Virginia to welcome our new granddaughter...I have missed you all.
Amarantha, I'm glad the procedure of placing your port is behind you! Mine was done with deep sedation and I don't recall a thing, but I'm pretty sure being awake through it would be miserable.
Lori, I hope this season's fires are finished and there are no deluge rains to destabilize the burn scars. When we departed California my best friend had just been diagnosed with BC and is starting chemo on Monday. It's not IBC but 4 nodes were positive and they're throwing the kitchen sink at her. And now I'm a thousand miles away and can only support her with phone calls and cards and prayer. I hate BC too.
Minnie, nice to see you again. Traveltext and Moreshoes, it's so nice to have friends around the world to support and encourage one another. SB
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SB yes it seems fire season has come to an end finally. We've actually been getting a fairly wet winter thankfully, and it's supposed to rain every day next week. Some mud slides in the burn scar areas (PCH was closed in Malibu during last storm due to a mudslide, then again yesterday with another mudslide,and I expect they will have major problems all this week), but thankfully none of the burn scars are close enough to personally affect me.
Hope you are settling in to your new home and can find some time to enjoy it now. Sorry to hear about your friend. Some of my long distance friends have been my biggest supporters while most local friends have disappeared, so I wouldn't worry too much about the distance. I don't have to tell you how much it means just knowing that someone is there, especially someone who is able to listen and understand.
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Nice to have you back SBE. New home, new granddaughter, it's all happening.
Lori, trust your PET scan went well. Finger's crossed for your MO visit.
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Thank you for asking TT, yes just got back home and the tech didn't even blow any veins this time haha! Although I must admit that holding my arms over my head is quite painful again due to the continued spread into the axilla. They have a rush on the report so I can meet with my MO tomorrow afternoon. The only upside to an IBC diagnosis is that my tests/scans etc are always marked Stat. That's a huge help emotionally because even a week or two without treatment is scary when symptoms are getting worse every day.
Hope everyone else is doing well.
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LoriCA, sending prayer and good vibes your direction for your MO consult today.
I found a new oncologist here in Colorado through another BCO member's recommendation, and met with him last week. He's great. Same philosophy as my UCLA onc, kind, listened to me, the kind of physician I feel comfortable having as a partner in this lifelong battle.
My California friend had her first chemo yesterday. As so it begins for her...wig vs. hat/scarf!
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