Who's on Kadcyla/TDM1?
Comments
-
Thank you ladies for replies!
another question.... when you have your Kadcyla infusion... do you have to remain after your infusion is finished for another half hour to be monitored ? My nurses informed me that I do/will have too. so after each half hour kadcyla I will need to remain another half hour to be monitored. The nurses said it is the only drug that they require the patients to stay after.
0 -
I still stay for the 30 minute observation after the infusion.
0 -
I think that I am still supposed to stay for 30 minutes, but they do let me go soon afterwards. I am probably still there for another 15-20 minutes by the time the flush my port, give me my upcoming schedule, etc.
For my first infusion I had to stay for 90 minutes!!!!! There were only 2 nurses there by then and the cleaning crew....and me.
I finally convinced them to let me go after an hour.
0 -
Hi there,
Been lurking awhile. Encouraged to hear about the tolerability and long-term effectiveness of Kadcyl. I've just had my second Kadcyla infusion. Well, this is my second time starting it. Had it earlier in the year but was taken off due to possible lung progression. Did a few months on Taxol and then the progression was ruled out. Of course, glad it was determined that my lungs actually were clear (I just had inflammation) but it was a bummer to be on Taxol again. Lost my hair - again. But worse, I got a fair amount of neuropathy in my hands and feet. Not so much painful as just the uncomfortable feeling of numbness.
So, my question to you lovelies is whether, based on your experiences, I can expect improvement of neuropathic symptoms on Kadcyla or does it aggravate it? Incidentally, I am also required to wait 30 minutes after infusion in case of allergic reaction - after the first one it was 90 minutes! Thanks!
0 -
Welcome Margarita!
I have been on Kadcyla for 2 years and I only have brief numbness in my hands depending on what I am doing...nothing that I can really explain. It lonly lasts for a few seconds.
And my feet get slightly numb when I am laying in bed.
But I have been on chemo for 14 years, so I guess some complications are to be expected.
0 -
Wow! Denny you are an inspiration! Yes, at night in bed or anytime I put my feet up is when the numbing really kicks in.Thank you for your quick response. I'm definitely glad to get off Taxol and back to Kadcyla. My first go around with it was very doable so if this blasted neuropathy improves, I'll be delighted.
0 -
margarita- I haven't experienced significant neuropathy but do get some occasional fleeting numbness in feet and tingling or cool sensations a couple days after each infusion. No one has been concerned, and it's mild and remits quickly.
0 -
CJRT, that's good to know. I'm now almost two weeks past last infusion and feet are feeling better. Perhaps this is something that will be cyclical between infusions - worse right after and then improvement until the next one.
0 -
Hi everyone,
I have been on Kadcyla for almost 2 years (in December that is) and I am on cycle 31 now. No progression in various mets so far. Very rarely do I feel really bothering numbness in my hand and feet and only for a short period of time. The more I do, the less I feel it. Swimming and walking has helped. Also, I do not ever stay for post treatment (maybe I did the first one in December 2014?). Side effects have been manageable and mild compared to taxotere, carboplatin or doxcil. Some headaches, some low platelet (a little nose bleed here and there) and some serious fatigue fior a couple days every cycle. The only problem so far in my liver but I keep my finger crossed and each time hope I will still be able to get my treatment. I skip 2 so far because of liver enzymes. I am wondering if any of you heard what other drugs are or might be in the pipeline after kadcyla has stopped working or if there are too many dangerous side effects?
0 -
Thanks Margarita!
Marl5900-I posted this same question earlier and hve been doing research of available chemo combos. So here are my future choices....
Halaven alone
Tykerb & Herceptin, Halaven or Xeloda
THP combo- Taxotere, Herceptin & Perjeta
Perjeta, Herceptin and Navelbine
Avastin & Xeloda
Abemaciclib Inhibitor with Letrozole, Arimidex or Tamoxifen.
~~~~I have had Herceptin and Taxotere. Perjeta is a first-line chemo, so I don't know if I would qualify.
I do feel better since there seems to be a lot of future choices.
0 -
Today was CT scan day for me. I am Praying the Kadcyla keeps my lung mets stable or even better. .... they are gone. and ... that I have no other mets that have developed.
How are you ladies doing?
(((hugs)))....
0 -
DL3-prayers for a great scan!
I am the same but horrified that Trump won because I am so afraid that he will end our health insurance and the pre-existing clause.
This totally makes me sick.
0 -
I think Trump wants to keep the pre existing condition clause
http://money.cnn.com/2016/03/03/news/economy/trump-health-care/
0 -
-
it would be catastrophic for millions of Americans to lose coverage because of pre existing conditions.
0 -
I agree. Yahoo just published something that sounds better. I geuss we just have to wait and see what damage he will do.
As if we don't have enough to worry about.
0 -
I share your worries about what will happen to health insurance under a Trump. Not to mention the SSDI and Medicare that so many of us rely on as well. You said it Denny, "As if we don't have enough to worry about"!
Good luck on the scan, DL3!
0 -
I will get results from scan on Monday during my Onc visit.
speaking of ..... do you ladies see your Onc prior to each of your Kadcyla infusion? I have labs, then see Onc then next day go back (sigh..wish all was same day) for my kadcyla infusion.
0 -
DL3-I don't see my onc until before or after my PET scans.
The only time in 14 years that I had to see him before my treatments was in 2004 when I was on the clinical trial phase 2 of Gemzar and Herceptin.
There were 25 ladies in the USA on that trial, including me. So we had to be watched carefully.
But Kadcyla has been around for about 3 1/2 years, so it has been proven safe. But if your onc feels better to keep tabs on you, that can be a good thing.
0 -
Hi Denny123, while i was on THCP AND then herceptin only.... I had an Onc Dr appointment prior to each of those infusions. My Onc must LOVE to see his patients before all infusions I guess. .... sigh.
0 -
Thank you Denny123 and MargaritaMI for wishing me luck on my scan results.
Have a great weekend everyone.
0 -
DL3-I am surprised that your ins company pays for so many onc appointments. But it can't hurt.
0 -
Hi, i will like to know how Many are with katcyla triple positive MBC.
Thanks.
0 -
Meeeeee (waving my hand wildly)
0 -
Hi ladies, had my labs today ,,tomorrow is kadcyla, and my follow up was today with oncologist for my CT scan i recently had. All is great. labs remain great. actually showed slight shrinking on the noduule's .... as one was 5 mm it is now 4 mm and the other was 10 mm it is now 9 mm after 3 kadcyla's . and nothing new popped up... which was my BIGGEST FEAR. my SE's right now is a sort of dry mouth nothing bad just lil dry and some foods taste dry. have a little bit of nasal drip too which I had that on herceptin.
Wishing a cure of all of us~ Hugs.
0 -
DL3, congrats on those great scan results! For the record, my Onc sees me before every infusion too. Basically, I see her every three weeks. But, she did say recently that she may reduce my visits with her to every six weeks so long as things remain stable and I feel good. In my case though, I've switched infusion cocktails 5 times in the 1.5 years since I was diagnosed so I think the dynamic nature of my treatment has led her to keep a close eye on me. I don't mind it as I always have a few new questions for her.
0 -
Hi ladies. I introduced myself about 6 weeks ago. Had progression on Herceptin and Perjeta with brain mets. Finished radiation therapy last week and met with the MO today. I will be starting T-DM1 next week. I noticed that one of you had a question about the observation period after your infusion. Genentech recommends an observation period of 30 minutes after your infusion and most infusion centers will follow that standard.
I'm looking forward to joining your discussions. Here's hoping that all of us have stable disease for many years to come.
0 -
Hi Ladies,
Thank you MargaritaMI..
Welcome .. pwilmarth .. yes it was me that mentioned I have to stay 30 min after each infusion.. and I tell ya what my nurses time it too.. lol they wont let me go a minute early. giggles.
Wishing you the very best pwilmarth... actually wishing all of us the very best on Kadcyla. just had my 4th infusion Tues this week.
0 -
hi Denny123, how are you doing?
How are all the beautiful lady's doing?
i will like to introduce my selft.
I am triple positive MBC, after almost a year with Herceptin , Perjeta, and tamoxifen , I have a small progression in my bones, last September,
So my doctor decide to change to Karcyla, I just have my first infucion one week ago.
I notice that has been long time since your first prognosis(,denny123)
I will like to hear about more success histories ...
Have a great day everyone!!!!
0 -
Welcome ESCORPION!
0
