Who's on Kadcyla/TDM1?
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Just reporting in to my Kadcyla sisters.
Completed my seventh dose of Kadcyla twelve days ago and will receive my 8th dose next week. Had a brain MRI Monday and just received results from Radiation Oncologist. I had 18 micro-lesions back in November. Today, the majority are gone and the few that are left are much smaller. I'm due for another PET/CT scan very soon. Radiation Oncologist says this it the best possible outcome.
My appetite has improved quite a bit since starting on Remeron and my peripheral neuropathy is much more tolerable with MS Contin, Gabapentin and Oxycodone for breakthrough pain. I had lost about 50# since November, but now it's stabilized. I wouldn't mind losing a few more pounds as my weight is still higher than what I usually weigh as an adult.
My liver function tests are stable. I have more energy and I'm doing more than I was 6 months ago.
Hoping all is well with each of you.
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pwilmarth- So thrilled to hear your positive news!!!! Wahoo!!!
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Thanks for share the good news!!!
Wishing everyone a good weekend !!!
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pwilmarth... girl.... YOU ROCK! Great news! Thank you for sharing. Hugs~
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Hi, glad this drug is working for so many. I had a treatment 2 weeks ago and the tumor markers went up. Dr. talked about a pet scan and I go back for treatment the 26th. Dr. will be gone and I will see a NP that I have only seen once but she had really research my case and seemed to know a lot about me. It has scared me. Had high hopes for this drug and it may not mean a lot. Will see but was wondering if anyone had the tumor markers go up on this. Been on it since Dec. I hope the numbers drop down this week. Please send prayers for me. I will keep you all in mine. Thanks for being here. People really don't understand and it is hard to talk about with them.
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Pasque:
How do they check the tumors markers? With a blood sample? Are they acure ?
I really not well inform about this,
I will keep you in my prayers ... Hang in there!!!
We are all here to support you
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What are you tumor markers numbered at, Pasque? From what number did they go up and what are they now?
I've seen cycling of tumor marker numbers but nothing serious (usually stays in the "normal" range).
I get infused every 3 weeks so wouldn't get bloodwork 2 weeks after a treatment.
What is your understanding of the normal range?
Don't let it get you too excited.
Will be praying for you, dear.
Miriam
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Yes it is done by a blood test. It started out good by going down. Not by big numbers but going down. When I was on taxatere it held them steady but didn't bring it down that is why they changed me to Kadcyla. So was so happy when it was going down. I am still in normal range but just barely. I am sure they will do the test again next week, but sometimes I am gone before it gets done. But I just call the next day. I am not depressed about it but I admit to being nervous. You don't know where you go next. Hope It lines out here, this isn't so bad. Thanks and have a great weekend.
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My MO says that the CA15-3 isn't as indicative of tumor progress as is the CT scan. So, I've seen mine trend upwards, then back down. I wouldn't let that test tell you how you are doing, unless you're in the 15,000 range (where I started 6.5 years ago, LOL!).
It's a great drug, so enjoy being on it and having hair and lessened fatigue!
Have a good weekend.
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Thanks that makes things sound better. The sun is out and my niece is coming and her oldest daughter turned 7 today so I made her a bunny cake. I am sure she will be happy. Thanks for the info. It all helps. Have a great weekend.
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In the last three months, my numbers trended steadily downward but after the last treatment they went up just a bit (but still within the normal range). After doing a little "internet research" (which I know isn't always wise), it appears that this down and up thing happens sometimes so I'm not too worried at this point. Hope that helps! Hope everyone is enjoying their weekend!
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Hello Pasque... my oncologist doesnt use the tumor marker so I cant help you. Thinking of you.
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That is good to know that this happens to others. I did go 4 weeks between treatments last time so that might be part of it. But I really appreciate the input from every one. Sure helps to have people who understand. Will let you know what I find out Wen. Thank you.
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Pasque, I went back and checked by ca 15-3 numbers. Mine have gone up and down over the months that I've been on Kadcyla. My MO always says that unless the jump is dramatic, it's nothing to worry about and in any case (even in case of a dramatic increase) should always be considered in context with other test results (i.e. Scans) and other symptoms and factors. That said, I do understand how it can induce a bit of anxiety to see them increase. Keep us posted!
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Hi, I went Wen. and the tumor markers went up 3. It's at 41 and 35 and below is normal. Last treatment It didn't affect me at all. This one I am sore all over. They told me we will probably do a pet scan but they are not too worried so I will be in touch in 3 weeks. Thanks for being here. I am in Iowa and we had snow this morning. Didn't stick and spose to get more Sunday. Don't feel like being outside anyway. Have a great weekend.
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Hugs to you Pasque.
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Have a wonderful weekend ladies.
Kadcyla #11 next tuesday.
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Hi ladies!
This thread is quiet, I really hope is because of little side effects and everyone feeling ok with Kadcyla.
Please check in when you can. What are your main side effects, issues? How many treatments have you had so far?
I'll start. I've had 7 treatments, and so far no side effects compared to my previous treatment (I do understand that this might change with time). Scan on Friday...
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Tomorrow is going to be my 10th treatment, today I had my CT scann
Regarding the side effects, I have to clarify that I am with Zometa for bones too.
(When I am with medication ) the mayors side effects are : numbing In my right arm, and somehow my feet get very pain like kind of burning sensation I can't explain .... Anyway I taking Tylenol 3 at night for pain...only to sleep
But after the the medication run off, that is the first 10 days, I feel pretty good...
Today I feel great.... So great I don't have any pain at all, very mild from 0 to 10 my pain is 1, but when I have treatment is like 7.
So the first 10 days with pain (7) and the rest mild pain... ( 1)Feel good...
So I guess this can be a signt that the medication is working !!!
💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾💃🏾
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Escorpion,
I'd have that burning checked out as it sounds like CIPN (chemotherapy induced peripheral neuropathy) which I have as the only serious SE from the Kadcyla. It's treatable with Gabapentin (Neurontin) but it can be a bear to tolerate without the Gab.
Gramen,
I've been on Kadcyla since Jan 2016 & am infused every 3 weeks, so I don't know what that adds up to but I just had TX 2 days ago and I'd guess that would be somewhere in the neighborhood of a couple dozen times (is that right? girls, help me out as I don't feel like figuring it out). It has kept me stable. And my hair is really nice now.
Other SE's I get are drippy nose (without warning & deviated septum makes it occasionally gross), extremely rare (as in, perhaps 1 o 2 times all this 15 months I've been on this) mild, mild nausea on the 4th day for a brief minute; in fact, I usually don't notice it. What else? Nothing really comes to mind other than a bit of fatigue. I try to keep walking and gardening (now that the weather is beautiful) and enjoy myself.
Seriously, it's SUCH a great drug for me that I hope we all can enjoy how well it works. I don't think we're a large group of girls since we usually have had to fail some of the other drugs first.
Love to all of you,
Miriam
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yes it sure is quiet here. I am thinking the ladies are doing well. busy time of year. I did message Denny123 the other day as I havent seen her on here for a while.
My SE's are a little runny nose for few days after infusion, and my AST is still rising a little teeny bit... but nothing that is red flag. .I have infusions on tuesdays and seems like by that friday afternoon... BAM fatigue hits, for at least 2 days sometimes 3. I just had #11 last week. i dont have a scan until I think July 3rd or so. we are taking my ct scans every 4 months this time a bit longer as I am going on vaca and then have yet another surgery for my reconstruction surgery I had.
Wishing us all the very best.
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here I am. Don't have this app on my cell, but was able to get in by replying to last message.
I fell on April 15 in a restaurant insude on an unmarked poorly lit step and heard my right leg break and then fell on my left shoulder and broke that.
Had surgery on Easter to get a rod in my leg and shoulder has to heal on its own.
Came to this skilled nursing home on April 20 and progressing slowly and painfully.
Had to skip a chemo, but will go by ambulance this friday.
Guess it will take a few more weeks until I can go home.
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Denny!
Oh my goodness, what an awful mess. I thought your rule of thumb was "don't blow your nose". Now you'll have to add to that list, "don't fall!". So sorry you're going through all this.
Hope you mend all right! And hope the nurses are treating you well.
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Oh no! Denny, I'm so sorry. Sending healing thoughts your way!
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amazingly my nose has hardly bled in here. Guess it helps to stay in bed for 3 weeks.
But I wouldn't recommend it.
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So sorry about the fall. That is one thing my Dr. stresses quite often. Be careful not to fall, because it means rods in the bones to help heal. I use a walking stick most of the time and crutches some. I can walk with out them but feel safer with them. In the winter I use golf shoes with metal pins when I go out side. I used those long before I got cancer. Can walk on ice and never slip. Prayers are with you. I do have a drippy nose and my eyes water some.
Feels good to have some garden in. I just do containers now. To hard to get down and back up. I really don't need much. Just nice to keep doing something you always did. My niece and her family have got moved up here now. To have 3 little kids around is so much fun. Their laughter is a God Send.
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awww Denny I am sorry to read your news of your fall and break. I will say a Prayer right now and I do hope you are on the mend to complete healing. Hugs~
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Denny123: hope you get well soon...Keep us inform please.
Sending everyone best wishes health and happiness...
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Ladies, I'm starting next week. What's the one thing you wish you knew but didn't before you started?
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ojttocs:
The only thing I can think about is:
I didn't know how long it will take the medications to work, and how long the sideseffect last,
And I really didn't know if the medications was working so creates allot of worries
I will take medication for pain relief.
Hopes it help !!!
Wishing you the best!!!
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