Who's on Kadcyla/TDM1?
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Denny123
I wishing you and all of us the best for this year to come.
Keep strong Denny... You really are a fighter....
I know there is no words to say to you about your lost....I only can say that we, all of us are here to support you and to listen to you, even when we don't replay to messages... We are always listening ... And keeping you in our hearts ....
Keep strong..
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Denny-with the holidays and work commitments, I haven't had a chance to "check in" on our group in several weeks. I am so very, very sorry to read your post and your most recent PET scan results. I will have you in my prayers. I do hope that you will qualify for the clinical trial that you are interested in. Please keep us posted as you begin yet another "chapter" in this not so pleasant journey we are in. Big hugs!!!!!
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Thanks Escorpion and Fran!
I shall continue to fight! Got a call on Friday from my Protocol nurse and she was having a hard time finding 16 years of documents from my surgeries & treatments!
I do probably have all of the copies but I guess she has to get them from the doctors.
So if she can get them all together and an approval, I should be starting next week. Meanwhile, this is the first time in almost 16 years that I have not been on chemo and I am getting nervous since I know the cancer is growing.
I will keep you all posted!
Denise
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I finally got the approval yesterday to start on the clinical trial this Tuesday, Jan 9. Being off chemo for 6 weeks for the first time in 16 years has been making me nervous.
I have to get bloodwork on Monday, then will get the two 8mg chemo pills on Tuesday. I also will be given a dose of Immodium to prevent diarrhea and it is provided at the chemo center.
Since my previous Kadcyla has caused constipation, I am hoping that things will just even out.
It was originally thought that I would have to stay at the chemo center for 8 hours for hourly blood draws, but that has changed to only a few draws.
Bitterly cold here in PA with a wind chill this morning of -25 degrees. Ugh
Denise
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We're all praying for you, Denny, and thinking of you.
I know that feeling of being off of TX for a time. I had that in August and September when they found that brain tumor (more metastasis). Still, I was doing OK and they seem to realize that you can miss for abit.
Your success will be ours eventually, we hope. Stay warm!
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haven’t checked in in a while, but wishing all of you a happy and healthy new year!
Denny- Sending positive vibes your way, and hoping the clinical trial brings great results with minimal side effects. Will be thinking of you
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met with my new oncologist yesterday. due to insurance i had to switch ...believe me... i struggled with this. cried with this. it sucks. I loved my onc and team. so.... onward... met with new onc. he was okay. but I was sitting there telling him that I knew there was a super kadcyla in the works... ds-8201 and he smiled ..yes, yes there is he said. then I started letting him know ..i am a researcher... for my future etc if or when needed. told him with my previous onc... that we discussed next drug would probably be tykerb then xeloda etc. he basically stopped me right there said we wont talk about it that far he only focus's on basically the now from the way it sounds we had few other words with the discussion about me talking about side effects of xeloda etc he said well really there isnt that much side effects but if you read into all that and hear all that then you can make yourself psychologically get those SE's. (hope this makes sense). so onward.... he said my next drug would probably be Neratinib. he said it is pill form. I am her2+ gal. (my 2 tumors are very small in lung) I was thinking i read somewhere neratinib is to keep cancer at bay ..does it have a chance to zap/kill the tumors? this new onc also said he had a patienton kadcyla for 7.5 years..she is younger than I he said. I didnt ask what she was on now... wish I had of. my husband said he thought the dr meant she is still on kadcyla for 7.5 years. My new Onc is Indian heritage. I can understand him well but a couple times it was a little hard to "read" him if you know what I mean? Denny123 I am going to research (yes I dont care what my new onc says lol) about your new drug Poziotinib.
I think I would like to eventually be on a pill form. I dont have a port. mine was taken out during breast reconstruction. then we found the 2 teeny nodules during PET/CT scan so I do iv thru am. my arm is tired of this lol
Denny123 I think i read somewhere you are Her2+ gal? are any of you other ladies Her2+ ?
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good to see you ladies checking in ..! Denny123... I have Prayed for you.
to all of you ladies. 0 -
Back on Kadcyla after a year. I tried to read thru all the posts but too many. What do you ladies use for the constant nasal drip? Also noticing a little color as far as blood.
Wanda
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Thanks ladies!
I started the chemo today. I had to go yesterday for bloodwork first.
Today was a long day, as expected. Head nurse was running 2 hours late, so that really put it off. She had to write the orders, I had to have a blood draw, then take the chemo pills.
But they couldn't get any blood from my port. I had 5 nurses trying, and they even lowered my reclining chair so that I was almost tanding on my head. No go. Then one of the nurses tried it, and got the blood going.So I took the 2 chemo pills, along with 2 Immodium pills. 35 minutes later, I got a rush of nausea, but it passed after several minutes.
The original plan was for me to be there for 8 hours having my bloodwork tested, but that change. Good t hing, since it took so long to even get the pills to start.
Had a ginger lozenge for nausea which didn't help, so just took a Zofran.
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Wanda,
I never found any help for the runny nose, but if you start to have a lot of bleeding, put a little Afrin on a Q-Tip and swab the inside of your nostrils.
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DL3,
That would be so hard-to lose your onc and team. I have been with mine for 16 years.
Yes I am Her2Neu +++.
Xeloda is really a good pill, and my eventual option will be Xeloda with Tykerb. Xeloda by itself is pretty easy, with the hand-foot problems. (My new stuff also has this).
I discussed the Super Kadcyla with the head nurse today and she was interested in it.
So at least we have a lot of options. And I will be doing research on Neratinib.
Good luck!
Denise
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Good tip Denny thanks so much.
Wand
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Hi Ladies,
how are you doing Denny123 from new treatment?
Wanda, my nose doesnt drip constantly I would say for 10-12 days after infusion then slows down to near nothing or nothing
there is some confusion on if my now new insurance will take on my onc from last 3 years got a phone call couple weeks ago, ins coordinator said she is sure they are with the provider. i said no they arent as i looked online and called, she called and was told they are. so i am waiting to hear back as I have infusion with new onc tomorrow.
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DL3,
I honestly was on the way over to comment on my new chemo when I saw the email notification of a post.
I have been on Poziotinib for a week, and so far (maybe since I have been constipated for 4 years from the Kadcyla), no diarrhea. I am taking stool softeners, actually.
I had nausea for the first 3 days, but not the puking kind.
So far my side effects are mouth sores, a sore scalp, acne around my mouth, my nose bleeds are worse, loss of appetite, dry mouth, only a few finger cracks.
But the best part is the weight loss! I lost about 5 pounds in a week! If I lose 17 more pounds I will be back to my pre-BC weight, which would be great.
I eat a very small meal every 3 hours.
I take 2 pills per day for 2 weeks, then I will have a week off. Then 2 more weeks of pills, etc.
My home-health psychology nurse daughter inquired about home health care, which will help, since they can access my chest port for the bloodwork that I need to get tomorrow. I am in PA with frigid temps and snow.
And I will have a number to call 24/7 with questions....like on day 2 when I had an allergic reaction in the late evening and my throat started to close up. I took a Benadryl, which helped that, but wasn't sure if I could. Talked to my nurse the next day and she said that Prednisone or Benadryl would work. I prefer the OTC Benadryl.
That hasn't happened again since that first day.
Denise
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hey Denise, I saw your post yesterday but got knocked off internet .. just got back on ...
hope you do well on the new treatment and your SE's lessen quickly. Will you see your Onc every 3 weeks as well as get blood drawn every 3 weeks? I was up and down with my weight when on hard chemo initially in 2015 (TCHP) but it has been slowly creeping up on me that I am now 18 lbs more than before diagnosis. uughh. I worked out like crazy. Avid zumba and boot camp gal... worked out daily . however in last year.... I have lost all desire. I have got to find that desire again ... my glucose has risen slightly.. think I am eating too many sweets and carbs
I am back to my original oncologist a glitch in the new insurance .... when I looked online it doesnt show my Doctor or center. so I called again nope he isnt in system so in meantime my oncology office called asking what new insurance do i have so they can call... sure enough my onc is in my new insurance plan i took the insurance coordinator flowers today because had it not been for her I would be at a new oncologist ... and I actually did meet with a new one last week but life has been a whirlwind this last week for me. so glad to be back with my regular onc i have had for 3 years. course ...he mentions I am ready for scan which I knew i was uuughhhh i get nervous with the scans . as you all do too.
Hugs to you all
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DL3-I am glad that you could get back with your original onc.!!
I think I am done with Poziotinib...took my last pill on Tuesday-so it was 8 pills total. My chin acne has turned into an angry rash-from my nose down to cover my chin. Nose bleeds all day long, ear aches. Now last night I started with another SE- inflammation around the fingernails.
My scalp is covered with a rash that hurts. And now I have thrush. Hurts a lot to talk or chew.
My protocol nurse talked to the chemo mfg and they suggested a break, and then maybe a lower dose. But I can't imagine things getting better.
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Okay, I am DONE with this Poziotinib! I took my last 2 pills on Tuesday and I get worse every day with more side effects. My face rash looks terrible and I refuse to go into public like this.
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Aw, Denny;
So sorry to hear of all those difficult and even gruesome SE's from the Poziotinib. Now that you're done with it, I think things will go back to "normal".
Are they going to do a PET or CT scan to see what it actually did to help? While those SE's are really terrible, if it works internally, then perhaps it was all worth it. Let's hope so.
Again, sorry you're struggling so much with it. Hang in there; your skin will heal but the tumors have to be dealt with.
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Ditto to what Miriamwillits said, Denny123. Really sorry to hear that the SEs were so terrible but really hoping that they did their job! Hoping that you start feeling better soon now that you’ve had the last of those pills!
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drats on the SE's Denny123... I am sorry. I hope you are able to take the weekend and get some rest and relief from the SE's. Many Hugs~
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Next is probably Xeloda with Tykerb. My home health nurse said my thrush is a really bad case. I had a lot of mouth pain right away, but not the white coated tongue.
The rash on my entire scalp is healing, I guess. It was so horribly itchy last night that I had a hard time sleeping last night. Going to take 2 Benadryl tonight before bed.
They could lower my dose, but the problem is that no one seems to know if it does help BC. If I knew that it worked, it would give me incentive to try again.
But I have to heal from this mess before I get something else and meanwhile, my tumors are growing.
I keep telling myself that those 8 days of pills maybe helped me somewhat.
I have to go to the chemo center on Monday to sign out of the trial and turn in my bottles. I just had a CT scan, so I doubt that they will do another one so soon.
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Denny123- Xeloda and Tykerb treated me well fior many years. Sorry this last drug didn’t treat you well and hope you are feeling better soon.
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Oh Denny-so sorry to hear about those lousy (and painful) SE's. Hopefully, now that it is finished you will heal up quickly. Sometimes I think the we really need to weigh "quality" of life v. taking the darn drugs. I'll be praying for you and hoping that whatever new drug regime they have planned for you will work and keep you up and about without too many SE"s. Hang in there!!!!
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Thanks ladies!
Leftfoot-what side effects did you have with Xeloda & Tykerb?
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When I was on Taxotere, I started having nasty mouth sores. They were horribly painful. But I remembered something my Mom had always emphasized. TAKE LYSINE! When I was young, and might get 1 little itsy bitsy mouth sore, I couldn't take my supplement happy Mom seriously. In pain with nasty mouth sores (the Magic Mouthwash just didn't cut it), I went online to do a little research. Sure enough, there were folks taking 1000 mg twice a day. That's a lot, but I can tell you from experience: it works! I never had one of those suckers again. And so much enjoyed being free from mouth pain.
Keep this trick in mind for whenever that happens down the road.
Keeping you all in prayer,
Miriam
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wish they would HURRY up with the super kadcyla DS-8201 have any of you ladies heard anything recent on any updates?
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I haven't. I will ask my onc tomorrow when I go in to sign off this clinical trial.
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okay Great Denny123... fingers crossed . Hugs.
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No word on the super-Kadcyla yet......
Just got verification today that I am positive for BRCA2 and a possibility of BRCA1. I had been asking for the test, but I didn't fall under the criteria....no family members with cancer, etc.
But the one question was iffy....had to be dx'd in my 40's. I was dx'd when I was 53, but my onc had told me that I probably had CA for 8 or 10 years....which puts the original start in my 40's.
But that wasn't considered. So now they will run my CA125 often, and my daughter should be tested.My nurses agreed that my symptoms from the clinical trial were severe and I have to wait until my rash heals and my thrush clears up before starting another chemo. And my onc is on vacation and won't be back until Feb 9, when I have my next appointment.
My protocol nurse said that he will probably want me to try another clinical trial, but I will refuse to do so. I want chemos with proven track records, not one that MIGHT work.
Not happy at all about going over 2 months without chemo.
And I heard words today that I never thought that I would hear "you now have very low blood pressure because you lost weight too fast". Me?
I did lose 10 pounds in less than 2 weeks.
And my BP has been moderately high since my dx 16 years ago.0
