Re: Kadcyla Side Effects
 

Adding more side effects after my 3rd treatment with TDM1: I continue to cough and have breathing problems on exertion, some kind of a breathing spasm when I yawn, constipation during each cycle, neuropathy on the legs / toes (I resolve them keeping my legs wrapped in a hot blanket - it gets much better after I keep them for 30 min) and the last one that really bothers me much is the dry mouth (I drink 2L of water a day), especially when I talk, I have no saliva in my mouth. Has anyone found a solution for the dry mouth?

Re: Kadcyla Side Effects
 

I am no longer on Kadcyla, and I did start a thread on its side effects when I was on it.
My experience is that it is amazing at getting rid of bone mets. My bones have remained clear. I will update if that changes. My liver enzymes have returned to normal. My platelets remain below 100.
I did get brain mets while on Kadcyla, so in my case it did not cross the BBB. Precision Radiation and catching it early makes a big difference.
I stopped because it was drying out my whole body. I had a hard time getting my balance in the mornings, because my body just felt "dry". I also did not like the sclerosis it caused in my lungs. It is a great drug, and if I have to go back to chemo. I would go back on Kadcyla, since I never progressed on it. I just needed a break and that meant going off trial.

Re: Kadcyla Side Effects
 

Are Kadcyla and TDM1 the same thing?

Re: Kadcyla Side Effects
 

Yes.

Karen

Re: Kadcyla Side Effects
 

my wife had great success w/ t dm-1. ned over 3 yrs . she got some dry mouth relief from biotine. battled low platelets by reducing dose to 3.0, stretching out tx to 4 -6 weeks at times . our version of neo paleo diet , plus sharks liver oil and chlorophyll from health food store . to support bone marrow. stayed on for 4 yrs due to great response but she came off last oct. due to signs of liver issues - caught early. drug irritation to liver , cancer damage and ablation led to varices around liver, spleen ( swollen veins ) still ned , no serious liver issue.

Re: Kadcyla Side Effects
 

I have done 9 cycles of Kadcyla now. Everything going fine and I am able to manage with the side effects too. Only concerning thing is that the CA 15.3 seems to be increasing gradually. I am very worried, is the drug working or not.
It was at 165 in November 2014, went down to 113 in end of December and is now back at 171 with gradual increases in steps. Anyone else has experienced similar.
Phil and others please comment

Re: Kadcyla Side Effects
 

I must add to my previous post that when my recurrence was found then CA 15.3 was at 306

Re: Kadcyla Side Effects
 

Dear Rupauli,

I've never had tumor markers, so I've been spared the anxiety that comes with watching them go up. That must be pretty nerve wracking.

What does your doctor say?

Amy

Re: Kadcyla Side Effects
 

Sympathies to you in watching this worrying indicator. My doctors aren't tracking TMs either so like Mtngrl I'm exempt from the anxiety. (One less thing to obsess about!) Otherwise, reading about the correlation of CA 15.3 with progression I can see why you're worried, but it does seem that, without some other indication of trouble, such as imaging, there doesn't seem much you can do so it might be best to sit back for now and assume the Kadcyla is working. Also, not to take away from your monitoring this important tumor marker, I did find one slightly old article mentioning multiple causes of non-cancerous ("false") elevated CA 15.3 levels (the emphasis here is on hypothyroidism) which might be worth a look:
https://www.researchgate.net/profile...bddcc99a8a.pdf
It mentions several conditions that can cause elevated CA 15.3 and closes with this: "In conclusion, elevation of CA 15-3 constitutes a sign of alarm in patients under follow-up for breast cancer and usually leads to an extensive and unnecessary search for relapse. Since its sensitivity and specificity are not 100%, we have to rule out other conditions causing false elevations, and hypothyroidism is one of them. In our opinion, clinical symptoms of thyroid dysfunction must be investigated and thyroid hormones evaluated together with the other causes of false elevation of serum CA 15-3 before performing more aggressive studies for detecting relapse in breast cancer patients. Routine determination of CA 15-3 is not recommended in the follow-up of breast cancer patients."

Re: Kadcyla Side Effects
 

i agree with talking with your doc - have they treated other pts w/ t dm-1 ? if not encourage them to ask genentech . U must have had at least one set of scans by now ? scans are much more of a sure thing than mrkers. i have heard of markers going up at first on t dm-1 , my memory says for a few doses , i have heard possibly related to tdm-1 killing off cancer and dead cells in blood increasing . do u get a cea reading ?
are u her2 only ? those w/ er+ and her2 seem to get less effect from t dm-1, and may benefit from anti hormonal .
if we lived in a tx world that truly respected our stage iv rights , we could try perjeta too and see if mrkers fall. but not with our present fda in this country .

Re: Kadcyla Side Effects
 

After 6 cycles we got a Pet Scan done and the doctor said that there wa almost 90% regression. I feel well too. Only thing worries me is teh CA 15.3 increasing. I get CEA also done and that too is increasing. I am now done with 9 cycles of Kadcyla and the doc told me that we would go till 12 cycles before we do another scan. I am ER+ and Her2+ and I am also on Aromatese Inhibitor and monthky Zoladex to suppress the ovaries. In addition I also take monthly Xgeva

Re: Kadcyla Side Effects
 

I have the 5th cycle coming up and I am struggling with the dry mouth during the 3 weeks between treatments. Tried Biotene mouth wash but is not working for me. Other ideas?

Also the neuropathy has increased as well as the pain in the knees and ankles I am extremely fatigued and I handled previous treatments well.

Re: Kadcyla Side Effects
 

Has anyone experienced dizziness while lying down on bed while on Kadcyla. I am on Kadcyla (9 cycles done). Till 8 cyckes I had not experienced any major side effects of Kadcyala. However after the 9th cycle I am experiencing little nose bleed, back pain and now dizziness while lying down. Very worries what is causing this. Please reply

Re: Kadcyla Side Effects
 

Lorraine did not have dizziness , but nose bleed could be low platelets. Lorraine had to reduce dose to 3.0 after 7 cycles to keep plats above 50,000. has neuropathy , mostly from xeloda but t dm-1 definitely added to it . we fought to stay on it as response was so good .probably went a yr too long on it in hindsight . stopped in oct 2014 . still ned but neuropathy is painful. plats still only 65,000 but L. is living a very full life. just saw our 8th grandchild in 8 yrs born last month.

Re: Kadcyla Side Effects
 

I do have dry mouth, so I brush my teeth several times a day and rinse with biotene. My biggest complaint is my knee's,ankle and feet are killing me. Someday's like tonight seem hardly bearable. I am going to try wrapping them in a hot blanket like previously discussed, or I will be cutting my limbs off shortly. :) Also, I do notice when my hands are hurting they are ice cold. I keep thinking is this really neuropathy???? My finance has neuropathy and his feet hurt all the time but they burn all the time it seems different. It does not hurt to his knees either.

Re: Kadcyla Side Effects
 

Please make sure you drink a LOT!! Also take potassium/magnesium - I take twinlabs. If it continues, you may want to speak to your doctor about lowering the dose.

Re: Kadcyla Side Effects
 

After two years of remission with only perjeta/herceptin, cancer exploded all through my abdomen and lungs. Pain was intense and I was getting pretty sick. Nov 8 I did my first Kadcyla. I had a rough ten days (nausea, pain, fatigue, constipation, heartburn, headaches, not able to walk) but am feeling better. Abdominal pain is much better and I've been on heavy duty pain killers and I am backing off. I'm not sure if it's because they changed my meds or if TDM-1 is working.

I get my 2nd tx December 2, so I'll see what it does to blood and liver then. Am going to need some better anti-nausea with this and a heartburn med. I'm at the point where I have anorexia-cachexia and I can't eat and am down in the 80s which is a bad sign. I'm hoping I get miracle #2 with Kadcyla as my son is getting married in May.

This is my 8th chemo and I've been in continuous treatment for six years, so I don't think anything would be easy at this point. But I'll take it for now.

Thanks for sharing your experiences.

Re: Kadcyla Side Effects
 

lorraines s/e got better after 3 cycles or so . I know u know this , but u need nourishment to help keep bone marrow strong, blood counts up - juicing etc. to keep kadcyla going . keep anti estrogen tx - zometa to block that pathway . we used paleo diet , (steak, greens ) whole pineapple weekly ,( heard bout papaya but didn't use it ) to get 7 full strength doses in , as plats went below 50,000 for awhile. we pushed for aggressive tx. because of good response . markers dropped right away , and could see cancer disappearing at ct scan after 3 or 4 doses . did a trick a couple times - took a 15 ' brisk walk just before blood draw , raised plats 10,000. did reluctantly have to reduce dose to 3.0, but still cancer went away . Here's Praying the same for you

Re: Kadcyla Side Effects
 

Hi CoolBreeze - So sorry to hear you've been going through such a hard time! The pain factor sounds dreadful and the cachezia must be a major battle. But I'm glad you're on Kadcyla. Not to generalize, of course, but I had a major progression last April after three years on Herceptin and TDM-1 turned it around completely: my suddenly growing lesions in axilla, breast, lung, bone all shrank, vanished or went dormant. No sign of CNS recurrence, either, which was the big worry after my cerebellum lesion last January. I did have a lot of trouble with nausea on Kadcyla for a while: we tried all the usual anti-emetics, even a cannabis derivative, nothing really worked and I was miserable, but after a few months the nausea just lifted and disappeared, I think as my system simply adjusted to the drug. My lasting s/e on Kadcyla is fatigue. I still have about 2/3rds of a day's worth of energy which is sometimes hard to manage with my job. But the cancer is under control, so that's what counts. Good luck, stick it out ... keep us posted?

Re: Kadcyla Side Effects
 

Hi all, I'm 3 months into this stage iv world. Had the 1st scan after 3 rounds of navelbine/herceptin/perjeta, lymph nodes resolved, largest liver tumor shrunk from 4.5 cm to 3, but two other 1 cm tumors are "brighter".
Dr said we would 2 more rounds and rescan, and discussed tdm1 as next line. I've read that some Dr's aren't seeing robust responses to tdm1 after navelbine...do you have any experience with this? Here's an example:
http://www.onclive.com/peer-exchange...-breast-cancer