Who's on Kadcyla/TDM1?
Comments
-
Hi Ladies. I have not posted on here before but I am delighted to have found some Kadcyla sisters!
I am on my 21st infusion and doing well and many side effects you are talking about i can relate to as you say compared to previous treatments they are minimal! The only other issue for me is nose and gum bleeding, has anyone else experienced this??
Also your thread on AST and ALT numbers I had to look this up and then realized my Comp Panel still refers them to SGOT (AST) 48 and SGPT (ALT) 40. My numbers seem to be stable in this count.
Do you scrutinize every number with your blood work, my husband freaks out at me as I am paranoid about everything! I get my CA15-3 number every 6 weeks now and that sends me into a panic but thankfully this has also been stable at 27 for a year now 😊
0 -
Hi, ScottishThistle. I have a slight bleedy nose but my gums stay mostly fine. I am diligent about oral health and have used Periogard (you can get it from your dentist) off and on through both kinds of chemo. So glad you are staying stable; these are the stories I need to hear! I do stress about my markers but try not to look at them, and my oncologist is very encouraging (OH, that's still in normal range, etc. etc.). Hang in there.
0 -
Magarita - Funny you mention capilitaritis, as I have tiny bright red dots, mainly across my abdomen. My MO and dermatologist say it's normal and are not the least bit concerned. I also get nosebleeds on Kadcyla and had found some rare bleeding condition that could have broken similar spots, along with nosebleeds, and mentioned it to my ENT (since apparently this rare disorder is usually first diagnosed by ENT's); he said I did not have the disorder and echoed the lack of concern of the other two doctors. My platelets also fall but not too low and don't stay there for too long. I've just added the red dots to the list of weird, innocuous issues I attribute to the Kadcyla.
0 -
welcome everyone,
I glad everyone is doing well,
No bleeding for me so far, my only SE, is my legs hurt allot when I get the treatment .
Stay strong
0 -
well my first dose kinda knocked me on my ass. I had a reaction during infusion- uncontrollable shaking, low grade fever. In total ended up being a 5 hour day. Oh and nausea after.
I am hoping someone can tell me that with pre medication, this will go better for me. I wasn't expecting this.
Hoping it's good my body had the reaction and it means that it's killing the cancer cells.
0 -
aww sorry leftfoot! It does get better. I had a kind of allergic reaction with my first treatment and now I get a pre-med for that.
For nausea, I get Emend and Aloxi. They are much better than the Kytril that I had gotten at first. At home, I take Compazine for a week if needed.
I can't take Zofran for the first week since either Emend or Aloxi has the same ingredients as Zofran.
I used to be offered a Tylenol as a pre-med, but never needed it for a fever.
Don't know if anyone else heard this, but there is a shortage of saline since it was produced in Puerto Rico and the plant has been destroyed. So I had one of my pre-meds as a push to save on saline.
I asked about my Alt again, and mine is shown as SGOT for the AST which is 44, and SGPT for the ALT which is 40. My nurse said it is fine.
0 -
CJRT, that's interesting that you also have red dots on your torso. How many infusions have you had? I just had my 21st- didn't realize it's already been so many - but the dots only showed up about two or three treatments ago.Anyway, it's reassuring that your doc also says not to worry about your dots. Agree that they are likely just another weird side-effect.
Leftfootforward, sorry to hear you had such a hard go of your first infusion. I've not experienced such effects but I do also get compazine as a pre-med. Occasionally I take it a day or so after infusion but usually not needed.
Denny123, haven't heard about a saline shortage but I'm going to ask.
I have a thyroid biopsy tomorrow- just another reason for stress and anxiety. Wish me luck!
M
0 -
Margarita- hope your biopsy goes well and that you get relieving news soon. I don’t know exactly the number of infusions but probably in the 80’s. I started Kadcyla in 2013. I don’t remember when the dots showedup
0 -
Thinking of you MargaritaMI... sending Hugs~
0 -
Thanks CJRT and DL3. My neck was pricked like a pin cushion- they gave me 2 or 3 lidocaine shots followed by 8 needle samples so hopefully they at least gathered enough cells for definitive results - which won’t come for a few days.Ah, the waiting. 😉
0 -
hey I started kadcyla last Friday and am suffering with sickness. They have given me a anti sickness drug but it doesn’t even have an affect. Everything else is ok. Just tired due to not eating as being sick. Does anyone have any advice? X
0 -
Jules-good luck with Kadcyla! What kind of pre-med did you get? When I started on Kadcyla 3 1/2 years ago, I had Kytril which did not help at all.
Then I read on here to ask for Emend and Aloxi and that made a big difference. If needed, I can take Compazine at home.
And I have also found Emetrol-an OTC liquid med that also helps.
0 -
Denny - my nosebleeds are rearing their ugly head again. How have yours been? Any tips or patterns you’ve noticed? Since my are only from one side, my MO now seems reluctant to attribute them to the Kadcyla, though two ENTs say they are related (and blame my slight deviated septum with it being one-sided).
0 -
CJRT-
I found that the best way to curtail he bleeding was to lay flat on my back for a month in a nursing home with a broken leg and shoulder
) . It hardly bled at all then.Since I have been sprung from the home and am finally getting around, the bleeding has started again, but not as bad as it had been initially, 3 1/2 years when I first started the tx.
What I read on a Kadcyla site is that it thins the membranes of the nasal linings, thus bringing the capillaries closer to the surface...so, yes it is an SE!
My nose did bleed more the first 2 years of my tx with Kadcyla and last Thanksgiving, for some reason, it bled copiously all day! And most of the bleeding was originally on my left side, but now it is also on the right side. I did have sinus surgery a few years ago for the deviation.
Anywho, I have found that Afrin dripped onto a Q-Tip swabbed into the nasal passages really helps. If not, I drop a few drops into each nostril which finally stops it. Sometimes I have to lay down until the stuff finally clots.
0 -
Denny- Thanks so much for your response. I was so caught off guard by the comment that it didn’t seem like a side effect people were mentioning with Kadcyla when I know I have heard so many complain and read the percentage with nosebleeds. Thank you for clarifying about the nasal membranes. I think that’s what my ENT originally mentioned, as did my MO’s PA. I was just caught off guard with my MO responding as if it wasn’t a known side effect in the absence of low platelets.
I prefer to just live with the nosebleeds rather than go the flat on my back in a nursing home route. 😉 However, I didn’t start my nosebleeds until six months into treatment and just assumed it had taken a while for it to affect me. However I had a hip replacement two days after my first infusion, so perhaps I had some of that lying around benefit initially too. Hadn’t really considered that component.
Hope that you’re healing well at home. Thanks again for your response, and have a great weekend
0 -
CJRT-there are only a few gals on Kadcyla at my chemo center, and I don't know if they have the bleeding problems. But I told my onc nurses about the Q-Tip and Afrin and they will tell their patients who have bleeding on other chemos.
Forgot to mention, in case you didn't read it on here, that if the bleeding is heavy and won't stop....squirt Afrin (I use generic Wal Mart stuff) on a bit of cotton and stuff it up that nostril. Hold it shut for 10 minutes. When you remove it, you will have a big clot, but it does stop it. Wish I knew this 2 years ago when I ended up in the ER and no one could stop the bleeding. Had to get it packed-ugh ugh ugh.
0 -
Denny - I might have been the one who told that little trick to stop them after learning it from my ENT. I just had the frequency increase and the comment by my MO left me questioning things after. I’m using saline gel all the time but looking for anything else that might help with prevention. Thanks again!
0 -
Flu shots while on Kadcyla? My MO doesn't have a preference. What has been recommended to you ladies?
0 -
Hi CJRT- My MO was in favor of me getting a flu shot (keeping in mind that I work in a school which is a hot bed of germs-lol). Surprisingly, the nurses administered the flu shot immediately following my Kadcyla infusion (talk about a double whammy!). However, the SE were no worse than in previous infusions. I'm scheduled for treatment #12 this Thursday and all appears good so far. Wishing everyone a good week ahead!
0 -
Thanks, Fran! Good luck Thursday. Have a good week
0 -
Hi ladies~!
I hope you're all doing well. Had CT scan 10/16 so this morning (mon 10/23) was my follow up... plus labs. All is good/ stable. i did have 2mm growth however oncologist said may not really even be growth could be in measurement . so continue on with kadcyla. I believe tomorrow will be #20 for me. I was so worked up to walk in and get CT results. I almost get nauseous. wish I wasnt like that. my onc and I have discussed my next game plan would be tykerb (when needed and I Pray that wont be for very long while) maybe add herceptin to tykerb. he said he wouldnt want to put me on tykerb and xeloda at same time until/unless necessary ... we would only start out with one drug. I know there is a new drug in trial for HER2+ gals which is what I am )... probably wont see it til next year 2018 ... DS-8201 it will be the next drug after kadcyla fails. supposed to be a "super" kadcyla. showing remarkable results as they say. hoping I remain on kadcyla tho for a long while yet ...as I do for you ladies.
My Onc has not recommended flu shot ...yet but my GP has discussed it...suggesting it. I have never had a flu shot in my life.
0 -
Hi DL3,
Just wanted to thank you for passing on the info. about DS-8201. I just looked it up and it does look promising!!! Happy knowing they are working on it!
0 -
you're welcome Fran! i hope it is approved for our pink sisters soon.
0 -
DL3-thanks so much for the DS-8201 info! Printed out the info and will give it to my onc the next time I go for tx.
Sure gives me hope!!!
0 -
I also had my flu shot with my Kadcyla tx, and felt worse the next day than I usually do.
Next year, I will ask my PCP to give me the shot in a separate appointment, since I won't have to wait as long to b seen with her appt.
I have to have it in my thigh because I have bi-lateral lymphedema, but controlled, thankfully.
0 -
you're welcome Denny123 ! Let me know what your Onc says. I too printed out... took to my Onc on MOnday... he said this is really good news. FDA approved now as I read. I read somewhere... might be here April 2018 ?
so very grateful we have another drug
0 -
DL3, very interesting info about the DS-8201 drug. In reading through the info on it, I was taken aback by this line on the manufacturer's press release: “there is no current standard of care for HER2-positive tumors after treatment with trastuzumab, pertuzumab and T-DM1." What? Is that accurate? My MO has always said not to worry because there are still many tools in our toolbox but I've never pushed her to name what will come next if/when I fail Kadcyla. Have been hoping not to need to discuss it any time soon but will definitely ask about this drug. Btw, I am happy to report that my recethyroid biopsy came back benign. Hooray for small things.
0 -
Great news on your biopsy MargaritaMI !!! WOOOOOT!!!
myself... I have discussed my next step and as your onc said ... my onc said same thing... we still have tools. saving the harder iv chemo...later... much later if needed. my next step would be tykerb. possibly tykerb with herceptin since I am a HER2+ gal. i am hoping to remain on kadcyla for long while tho as I know the rest of you girls are too. not sure why the manufacturer said what they said about no current standard care for HER2+ . maybe they mean in the neo adjuvant (sp) tools?
when you ladies discuss this drug DS-8201 with your onc let me know what is said.
Have a beautiful week everyone.
0 -
Yay Margarita! Good news!
I know that there are other options for us if Kadcyla fails. I figured that Tykerb might be my next one. But I love the fact that there is now a super-Kadcyla.
I get my chemo this Friday and will give the nurse the info.
Also just read in the CURE latest info that a new anti-nausea drug has been approved....IV Varubi.
0 -
i never get an anti nausea drug with my kadcyla. have never been offered it either... however my tummy never bothers me when I get the kadcyla infusion. i only get saline with kadcyla.
Have a Beautiful weekend ladies.
0
