Who's on Kadcyla/TDM1?
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Hi all! Finally got some good news today. I can get my infusion over three days next week! Will be a long day as I go to work at 5:30 and will leave there at 2 and get to the hospital asap, then stay there until 7pm. At least I can get it done! Yeah, they are making me stay one hour after, and I will only will be getting a 1/3 dose a day. I am hoping no reactions this time or I may very well keel over at work!
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Hello, does anyone else run a fever with shaking chills after an infusion? Has happened every time. With the first, it went to 102.5 and they made me go to ER, do the whole septic work-up and two days in the hospital before I sign out. In the end, med reaction. This time, it happened all three days at the infusion center, but not as high, then resolved. Tonight it is 101.8. Not calling yet, will see what happens. Any comments?
Moni
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Carolyn,
I am glad that you brought up the bloody nose and watery eye. My right eye is much worse than my left. And my onc said that he never heard of a bloody nose as a SE.
So let me be the first....
Reminds me to call my health ins to see if they can prescribe an eye drop that is an antihistamine...my friend uses Systane for watery eyes from Xeloda.
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Denny - Have you tried Flonase for watery eyes? I started it about 7 weeks ago after a discussion with my MO about the amount of benedryl I was having to take for watery eyes and dripping nose. Two infusions into the change I find the Flonase works... Maggie
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Maggie,
Actually, yes. I use Flonase for a sinus condition. Not working for me regarding the eyes. Called insurance company, but I have to check with my onc. And I have an upcoming eye dr check.
Guess I might as well wait to see if I will still be on Kadcyla after my PET results. Will see onc on Nov 20 for those results.
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I actually have had ongoing issues with a bloody nose since being on kadcyla and have even gone to an ENT. He attributes it to the medication and the constant runny nose. My blood counts have always been good
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Hi ladies,
My name is Julie. I'm starting Kadcyla Monday, Nov. 9! Been stage IV for 4 1/2 years, but my new liver mets are the first to be HER2NU positive. My cancer has changed genetically twice. (so, three diff. genetic types…Triple NEG, then ER+PR+HER-, and now ER-PR-HER+. Hoping SE are manageable and that it works!
Julie
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Welcome Julie and sorry that you had to join us. I am almost a 14 year survivor of Stage 4 BC with mets to my liver initially.
Now it has spread to my sternum and neck. Kadcylic did put me in remission a year ago and I took a 9 month break.
Now it is back and I will find out Nov 20 if the Kadcyla is working again.
Good luck!
Denise
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Just wanted to pop in to say hi, Denise. It will be 3 years with liver mets (6.5 since 1st dx) on Dec 21st. My 5 months to live came & went & I always think of signing on to the stage 4 thread & seeing your 10 yr celebration. I know God has a plan for me...and I thank Him for all my bc.org sisters who give me hope, inspiration & hope. I wish you the best results on kadcyla again...and send prayers & hope for all.
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hi Julie, best of luck with kadcyla. I've been on it for over 2.5 years and find the side effects very manageable and way better than my previous chemo. I maintain a very good quality of life on this medication, and hope that you find it easy and effective, too
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blessings Ronnie-
I am on a break from Kadcyla after 6 months on- it did knock my tumors down (not out) and now I'm resting on Herceptin for as long as possible. It did the work it was supposed to do. I had a very bad rash reaction.
Hope you are continually doing well! It's in His hands
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hI Denise, I have been out of commission for the past two months. Since my MBC to the lung ..two yrs ago my level of energy has been sluggish and my adrenal gland numbers very low....cortisol, etc. About two months ago during scans it was noted that a substantial growth was seen surrounding the pituitary. UGH!
Two weeks ago my neurosurgeon excised much of the tumor via a newer route that did not involve entry into the dura so hopefully no cranial complications. Next step is radiation to eliminate the residual tumor then back to Kadcyla. Surely hope that Kadcyla will be effective as a "clean up". It has been a long haul....seems like Iwas a resident at UPMC....looking forward to this next step. Hope that Kadcyla is effective for you, Denise. Peggy
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RonnieKay-best of luck to you! May we both have many more years!
Peggy! Oh my! so sorry for the complications and I pray that all will go well now.
As far as the extreme fatigue that I have had....on this second course of Kadcyla, I had a horrible time sleeping. Was up to 5 Sominex a night which still didn't work. Just couldn't sleep. Didn't sleep well on my first course either and was horribly fatigued.
Finally some friends on my eBay discussion board told me about Melatonin and just 3mg a night give me a very good night's sleep unlike I have had for years. I had been waking every hour with my hot flashes and even sleep through those.
Of course I made sure that my chemo head nurse approved of it.
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Did any of you take Decadron by mouth as a premed before Kadcyla? I am getting my first dose on Friday, no one told me to take it. I took Decadron before Taxotere.
Thanks
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I get an IV of Decadron prior, so maybe that is what they are all doing. Have been on it for over a year, and got it via IV back then too.
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2ndtime4me-
I am starting decadron po the day before and the day of, very high dose. I also get solu-medrol multiple times during the infusion and sometimes max out on the benadryl (300 mg). All of this is because of an allergy to herceptin. I still have a reaction and fever the day after. My MO is changing the way we do it and I am going to a weekly dose of 80mg over 6 hrs. to see if I can tolerate it better. Really like having the week before the infusion when I feel good and can forget for that time, but being in hospital after every infusion is not good either. Wish you the best.
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Hi Ladies, New to this thread. Also, new to Her2Nu status-recent biopsy showed genetic change!Started Kadcyla this past Monday. Had headache, low grade fever, fatigue, and abdominal pain. I talked to my ONC and he said he wasn't overly concerned-and those SE are improving with time.just wondering if any of you got abdominal pain? Also, do SE's get any milder with subsequent treatments?
Thanks,
Julie
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I did not have decadron...
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Hi Julie-
I think that first dose can be rough for some as I believe the protocol is to give more in the first dose than subsequent treatments. I too had a low grade fever but not until 10 days after. My chest felt tight, but no tummy pain. It is constipating however- perhaps that's contributing to your discomfort. I hope you will find the following treatments easier on you as you sort of know what to expect. Take care - rest as needed!
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Thank you all for your replies! It helps to hear from people who "get it" and who have been there. I'm on Day 4, SE's are getting better, but not gone. Now the abdomen doesn't hurt as much as it feels SO full. I can eat just a small amount and feel as if I had Thanksgiving dinner! Ugh. It's uncomfortable! Anyone feel that way? Oddly enough, I felt that way on Xeloda sometimes when mets were in sternum and lungs. Now mets are in liver. Weird.
Thank you for all the support! Here's hoping this Kadcyla does its job!
Julie
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Julie-
it should be apparent really soon if it is doing its job!
I had TDM1 treatments where I would garden the entire day after- but would need 2 days of rest and reading at some point after. You will feel better
Allison
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Jnh- As Longtimesurvivor says, it is constipating! I will do a third dose on Monday, and am starting miralax on Saturday! Not wish to have that happen again. I also have that 'instant full' feeling, too the point that I have lost 15 lbs since I first started having pain in my liver before dx(Sept). MO said it is from the liver enlargement and it is putting pressure on my stomach. Partially solved the problem by eating (snacking) small amounts at a time. A full meal is not tolerable and usually just returns. Sorry to hear that you are having these issues.
Moni
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I have been on Kadcyla for about a year total, and only had the full feeling briefly. Now I always have an appetite.
After messing around with constipation for the whole year, I have finally found what works for me...a dose of Miralax in the evening and 350 MG of a stool softener.
When that doesn't work on a daily basis, I take 2 ounces of Philips Milk of Magnesia which puts me back on track.
I also have had problems sleeping lately and Melatonin-3 mg works so well! After years of waking up every hour for hot flashes, I actually sleep through a lot of them. So I have less fatigue now.
PET scan Nov 17 to determine if Kadcyla is working again. I was on it for 9 months, went into remission...took a 9 month break and have the lymph nodes again above my heart, beside my esophagus and supraclavicular area. And a new node at the top of my spine.
If I am blessed with another remission, I will still stay on Kadcyla forever....no more breaks for me.
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Hi Everyone
My onco office called & cancelled my first dose of Kadcyla because they Don't have insurance approval yet. I have to wait an entire week to get it. They told me it would be $20,000 cash if I Paid myself. It will be 4 weeks since THP, when I finally get Kadcyla.
I want to get a second opinion about my treatment plan and whether surgery is a possibility. Any suggestions MD Anderson, Cancer Treatment Centers of America, Mayo clinic?? I live in the Midwest. Thanks hugs to all.
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Second time...... There many ncbI rated cancer centers in the Midwest. Most if not all are associated with large teaching hospitals..with university affiliation. This would be a great place to get the information you need. Good luck to you. Pegg
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2ndtime...no no no to Cancer Treatment Centers! Have heard bad things about it since my dx almost 14 years ago. I counsel Stage 4 and recurrence patients as a volunteer for Reach to Recovery for the ACS. Many of my patients had huge unexpected bills for their tx. CTCA give large doses of "natural vitamins" and antioxidants with the chemo which actually negate the effects of the chemo.
Most of those ladies have passed away.
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Thanks for replying Ladies. Next week can not get here soon enough. I am scared out of my mind.
Denny, My onco Nurse told me not to go there either. She said go anywhere but there. I have read the negative things on the Internet. I have a distant relative who goes for Stage 4 Colon cancer treatment right now and she can't say enough good about the place. They know I am hesitant to go there. She did mention all the naturopath meds they give her. YIkes !
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2ndtime,
Yes, the patients love it until they get the huge bills and until they find out that the chemos given there are not working.
Denise
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2nd time- if you run into problems with insurance approval, contact Genentech's patient assistance program. They have programs to help both insured and uninsured patients access the Kadcyla. They might be able to help make sure there aren't any additional delays.
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Thx all who replied,
I found out insurance approved it. So wish me luck that this works for me. Hugs to all
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