Who's on Kadcyla/TDM1?
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That is strange not to give you anything. It really helps.
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It is day 4since treatment and I have been wiped out all day. I could have easily fallen asleep at work. Trying to push through supper and go to bed early!
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That is typical. Day 4 hits me too. Take naps as needed.
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I had my first TDM1 infusion yesterday. Very mild nausea but really nothing too bad at all. Hoping that it continues that way.
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I had mild nausea. A friend suggested that I take Pepcid (check with you Doctor first). It really seemed to help. i also had some fatigue around day four but I woke up yesterday feeling back to myself. We're all different and I hope you coast through the treatments!!
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Thanks Ohmydarlin. It certainly seems to be a lot less brutal than some regimes.
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I have also taken Pepcid and also Papaya tablets for indigestion.
The best thing though, is Emetrol liquid, which is cheapest at WalMart.
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Just wanted to add my experience with revisiting prior chemos, and getting Perjeta in those already heavily treated for MBC.
I was in remission for many years on just Herceptin, after my bout with liver mets. Thinking I might be cured, I decided to take a Herceptin vacation. The cancer returned to my liver, big time, in just one year. So, because Taxotere had worked to get rid of my liver mets in 2001/2002 I decided to try it again along with Herceptin.
It was working very well, but unfortunately I wasn't able to tolerate it for more than about 4 months before the SE's became too much. My doctor at the time wanted to add Perjeta, but my insurance (Blue Shield) denied it because I had already been heavily treated for MBC.
I was able to get the Perjeta through Genentech's patient access program, and then, when I eventually switched to Kaiser for my insurance, they had no problem keeping me on the Herceptin and Perjeta because it was working! So, I was on that combo for almost 3 years before I had my most recent recurrence.
I am now on just Kadcyla, and also wonder what my next cocktail might be if and when it quits working for me. I don't think I would ever go back on Taxotere again, but I've wondered about Taxol because some have said it's easier to tolerate than Taxotere when given weekly. Or maybe Abraxane might be an option. Unfortunately I can't take Xeloda, because I am one of the small % of the population lacking the enzyme to metabolize it, and it almost killed me in 2003. So, I'm already thinking ahead about possibly Tykerb, or... Who knows what! We just have to keep hanging in there until the next greatest thing comes along, and I do know Genentech has more stuff in the pipeline!
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So much here!!! In March, I switched to Kadcyla because the tykerb was too toxic to me. I got where I could only take 1 Tykerb a day and even that was too much. I was so sick on it. More MBC women live longer on Kadcyla and many do go into remission.
It has been 2 years since dx with MBC. Because I had so much cancer throughout my body I wasn't given more than 6 months to live, and if that. I thought then if they weren't going to cure me, I for sure wasn't going to suffer with side effects from chemo.
So...my oncologist suggested Herceptin/Perjeta weekly low dose because of previous heart problems taking Herceptin. Within a year there was a lot of progression of disease. Since I had multiple brain tumors, zapped by Gamma Knife, they really didn't think I would make it. However last Dec 23rd I had another 19 brain tumors zapped. They let me take Tykerb because it passed the BBB but like I said, I couldn't tolerate it so for awhile just on Herceptin.
Because of progression in lungs, I was taken off of Tykerb and put on Kadcyla. My oncologist said Kadcyla had very little chemo and hidden in Herceptin so I shouldn't expect serious side effects. I was given it on a weekly low dose until last week when I had my first whole dose. They will try it again in three weeks to see if my heart can handle it.
Due to radiation, other medication and now Kadcyla the neuropathy in my feet and fingers worsen to the point it is just about impossible to sleep. I wake up and my legs and feet are on fire!!! One reason I didn't want to do chemo was due to neuropathy pain. I wanted quality of life.
I also am sometimes breathless, tired, and my nails are splitting.
The good news is latest scans show no cancer in the liver, lymph nodes, hylar nodes and the 2 C breast tumor is gone!!! This is good news. If my brain stays cancer free as I've had 30 brain tumors zapped the past 2 years, I might too be soon in remission except for all the bone mets. I would be so happy.
My oncologist did say if it stops working there are exciting new treatments coming up for Her2+ mbc.
Anyone have treatment ideas for neuropathy pain? I got it from a completely different medicine...not chemo. So...you can't avoid all the side effects. Well, at least two years later I'm still her kicking.
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Sunny is your signature right that you had your first bout of brain mets 11 years ago?
As far as future chemos, since you are also ER positive, you may qualify for Abemaciclib. I'm on it for brain mets but it works for body mets as well. So far my brain is stable (and that's with my never having had rads) and my body has stayed clear. My main issue is it whacked my counts enough that I had to have my dosage reduced.
I'm also sure that if and when Kadcyla stops working, there will be even better therapies out there. When I was bummed over having my dosage reduced, I made a flowchart of all potential future options. There's a lot for Her2 MBC
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Wondering if any of you have had tdm1 after navelbine (vinorelbine). I'm currently on navelbine /herceptin/perjeta but my Dr is already thinking of tdm1 for the next line of therapy in case we need to switch after 2 more rounds.
I've read in a couple places that some Dr's aren't seeing robust responses to tdm1 after navelbine...
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Here's one example, re: tdm1 after navelbine:
http://www.onclive.com/peer-exchange/advanced-breast-cancer-update/first-line-treatment-of-her2-positive-metastatic-breast-cancer
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Yes, Bad at Usernames, my brain met was found in 2005.
I didn't have any symptoms, but had read that the brain was a likely place for mets, so asked my doc to order an MRI for me. Good thing too, cause we found it early when it was only 8mm. By the time I was referred to UCSF and approved for the Gamma Knife, exactly one month had passed, and the tumor was 11mm when they zapped it.
I have been having MRI's of my brain every 6 months ever since.
My latest recurrence is no longer ER+, so we stopped the Femara when I started the Kadcyla. I was on the Femara (letrozole) since 2002, so was not sad to stop! I'm sure it is what caused my osteopenia. Very exciting about the Abemaciclib though, cause the ER status of any future mets could certainly change!
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Thanks for the link gramen, very interesting.
I consulted Dr. Rugo back in 2002 for a second opinion, when I first had mets to my liver. She is brilliant!
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Keep up the brave fight ladies! I will have my PET scan the end of August. The last one in May showed that the 8 nodes in my chest and neck were about the same size, but the SUV scores were higher.
I sure hope that reverses, but don't see that happening. I have been on Kadcyla for about 2 years.
I am finally better from severe lower back spasms that I had for 2 months. I swear it is fromt he Faslodex butt shots that I have been getting for 4 years.
I have been going to a chiro and for PT and I am better now.
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New SE to report, though it's not that serious: skin rash from sun exposure. I've never seen anything like this, and am hoping that I can find something with which to treat it (trying Hydrocortisone cream, but not sure if that will work). We are going to the Jersey Shore (Stone Harbor) this Thursday to stay for a week.
I know I'm supposed to use sunblock but didn't bother the other day, fearing only a bit of pink skin. I usually don't burn much.
But after seeing this rash, and that it seemed to be appearing where I had had sun exposure, I started wondering if it was due to that. I never heard this was one of the SE's to Kadcyla, but looked it up on one of the Kadcyla sites and sure enough, it is.
Will use sun block from now on! This is not a serious SE, so I'm glad to only be dealing with this.
Best wishes to all you other girls battling on! I'm finding Kadcyla to be very manageable. My Onc expects to keep me on it indefinitely. I think that's OK.
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Yes, it seems to be a side effect of everything that I have been on. But I have been in the sun for over an hour and had no problem.
But I seldom do burn. Lucky for me.
Forgot to mention...about my nose bleeds. I finally figured it out....simply to NEVER blow my nose. In April I had to go to the ER since my nose would not stop bleeding. Kadcyla thins the lining of the nasal passages, thus making the capillaries too close to the skin surface.
Since my nose runs a lot on Kadcyla, I had been blowing it lightly once in awhile. But just that was enough to cause irritation.
The irritation caused bleeding, and then clotting. So then I was blowing my nose to get out the clots, which made everything worse.
But since I have quit blowing my nose all together, I seldom even have the thin bloody discharge.
I am praying that I don't get a cold!
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So far I've not had any reaction to the sun from Kadcyla, but I have only had 2 infusions. I'm amazed how few side effects there are, in fact, nothing at all for me (so far). I am so grateful and wish the same for everyone else. I will also get rescanned beginning of August to see if the drug is working for me. I sure hope so.
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Yeah, Cath3rine;
It's easy on me as well.
Had a glimmer of mild nausea first 2 TX's, then never again. Since I've been on this since January, and go every 3 weeks, I guess I've had 9 infusions.
Tired: yes. But that's life, and it's something you can manage.
Denny, my nose drips a lot. Not all the time, though. I guess you can dab at your nose with a tissue or do what I do (that polite ladies don't do because my Mom always told me not to do): wipe with my back of my hand! Ha ha.
I appreciate very much everyone's discussion here; it's a HUGE help.
Love you, girls!
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Miriam I had a skin rash!!! I couldn't find any one else who did and could not find literature on it saying Kadcyla might be the cause but it surely was. Started on my chest and spread to my arms and very little on back of neck. I was on Kadcyla 6 months and they took me off it due the severity of my rash - the Dr had never seen anything like it -and seeing as how it worked on my cancer. Herceptin again now.
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Hi Ladies, I have had 3 infusions of Kadcyla. I have chills, no fever, achy feeling in the evenings for about 3 days, and for the first time since I started chemo last March, I feel tired. This is a totally new feeling for me, I have always had tons of energy. Any suggestions on dealing with this? Would vitamin B shots help? Also, I have a few other questions...
I am now having some joint and muscle pain, the bicep muscle in my dominate arm is very sore and tender to touch, has anyone else experienced this?
I practically live outside in the sun and I do use sunscreen, but I have developed an itchy place on my arm, not really a rash, just itchy! I've been using cortisone cream, it helps but doesn't stop the itching...Any suggestions?
I feel very fortunate to have had virtually no SE's until now, and I'm not complaining, just looking for answers.
I have my next PET scan at MDA on Aug 5th, get results on Aug 8th to see if Kadcyla is working. Praying that it is!
I am so thankful to have this site to go to. Thanks in advance for any advice you can give!
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ths! Stay out of the sun!! Give your body time to adjust to Kadcyla and be careful.
I have been on chemo for 14 years and have asked many times about the fatigue. My nurses said that Vitamin B won't help. The fatigue is because your body is fighting the cancer cells.
Take naps and slow down. It hits me mentally too, since I hate to just sit around and get very antsy.
I also have had pains in my right arm, and made it worse the first time I engaged the blades on my riding mower. So now I am getting PT for that.
But I am not sure if the Kadcyla caused the pains. Anything is possible, though.
Good luck and I sure hope that it is working!
Denise
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Denise, Do you have a port? I was told when I had mine implanted that they would last for years. Just wondered what your situation was since you have been on chemo so long.
I guess all of us stage IV's will have to have some kind of treatment as long as we live unless they find a cure. Just wondering how long the ports last without complications...
Oh and I wanted to ask if the PT is helping your arm? I think I made mine worse by trimming plants in the yard! I can't just sit still and do nothing when I see things that need attention! It's hard to slow down...
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ths-yes I have a port and is is over 14 years old. I have asked my nurses many times how long they really last, and no one knows.
It is a Bard port, not the new power port that takes more kinds of transfusions.
PT is helping my arm, and also I guess because I no longer use my riding mower. My son in law is now mowing for me.
But I have done a lot of plant and branch trimming in the past 14 years without a problem. Now my shrubs really need to be trimmed, but I don't dare bend a lot to pick up the branches since I am just getting over the horrible back spasms.
I feel your pain....and I feel so useless anymore.
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I've been on vacation, and I thought I successfully set this up to email me when new posts came in, but it didn't. I'm not always very tech savvie, but I'll try again.
Well, sad to say, the Kadcyla already has stopped working for me! I was so excited about this drug, which had given me very few SE's.
Before I explain all that, yes Longtime, my skin became photosensitive while on this drug. I've been on Taxanes for 5 years and never had the photosensitivity before! Of course, I found this out the day or so before I went to the shore for vacation, LOL! But, I had been prescribed a pretty strong cortisone cream for it, and that worked fairly well. My Oncologist says it is remarkable that I've never been photosensitive before this; most chemos cause it.
A few weeks ago, I told my son that I thought the lump in my breast was getting bigger and he told me not to worry, that I had always thought my own exams were somewhat subjective. But, by the end of vacation, I was certain the lump had at least doubled in size. Well, yesterday I saw my Oncologist and the lump has tripled since the last time they measured (7 weeks before)! So, it's off for me and on to something else. I'm so disappointed.
The "something else" will be Doxil combined with Herceptin and Perjeta. I know Herceptin. Perjeta I know as well (don't love its ability to cause intestinal fireworks). I don't know Doxil very well at all except for the initial reading I've done yesterday on it. Onc says that my lymph nodes felt fine but we will get a CT Scan to find out for sure. My CA 15:3 number was very low: 28.3. So, something unusual is happening, and at first glance, it would appear that only the breast tissue is acting up. Onc says she might have me consider seeing the surgeon to remove the lump if that is the case. We will see. I am looking at the cold caps because this would be my 4th hair loss & start over. What I have now (about an inch) looks fine.
So, I'm "packing my bags" and looking for a new thread. Girls, this IS a great drug. Just not the one for me. Hope to see you here & thon in the future. Blessings to you all.
Love,
Miriam
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hi everyone. Last month zarovka created a new thread on our stage 4 forums titled how many are we 2016. Z is attempting to count the number of metsters posting or lurking on our stage 4 threads. We are both thinking that folks are possibly missing this thread because they are monitoring only threads marked as their favorites.
If you don't mind can you please bump over to that thread if you have not already? It would be much appreciated.
Thanks so much, Mary Anne
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So, hello my wonderful sisters. I have had to say goodbye to H/ P after 3 years of NED. I'm truly hoping that Kadcyla will be good to me. I was diagnosed de novo in 2011. Initial treatment was Navelbene and Herceptin, also lumpectomy. That worked for over a year, then on to Xeloda and Tykerb for a short while. When that failed it was Taxol and Heceptin and Perjeta A hiccup in treatment came when the cardiotoxity caught up with me and I developed serious cardiomyopathy. Had to abstain from chemo for several months while my heart healed. During that time I developed a brain tumor which was treated with SRS very successfully. I was hoping that H/P was my answer but it was not to be.
I have developed a mass in my mediastinum which is paralyzingly my vocal cord and have a treatment scheduled in a week or so.
Here's hoping Kadcyla is manageable because I have scheduled a three week trip to Alaska with my sister in early September. I know I could do it while on H/P but don't know what to e Percy with Kadcyla.
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Hi Miriam,
I am so sorry that the Kadcyla quit working for you. It does sound like maybe you should get a lumpectomy. I will find out Aug 26 if I can stay on it. Or I may run into you on another thread.
I hope that you can stop back and keep us posted!
Good luck!
Denise
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Denny - How did you go with your appointment in August? I hope all is good with you
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Oops! Forgot to post an update! I can stay on Kadcyla! 7 of my nodes (that are in my chest and neck), are stable and only one has a higher SUV score, which means it is more active.
That one is the Hilum node at the entrance to my lungs.
But I am encouraged that the other 7 are stable, and certainly don't want to go on another kind of chemo which would be a hit and miss one.
I am still trying to find out when my next PET scan will be, and would really like it to be in 3-4 months.
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