Kadcyla Side Effects

[Mtngrl]

If I were an administrator I'd make this a sticky, or start a new "department."

I was on Kadcyla for nearly 10 months, from May, 2013 to February 2014. Fairly early, I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose.

From the beginning, liver enzymes were elevated and platelet count was decreased. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose (which I've had the whole time I've been on Herceptin or Kadcyla.) My ejection fraction was not negatively affected.

I've been off Kadcyla for five months. Liver enzymes are still elevated and platelet count is still on the low side. I still have lung inflammation, though my symptoms have improved. The neuropathy is almost all cleared up. My blood pressure is back to normal.

How about other people who've been on Kadcyla? How was it for you?

[Kathy T]

Amy, I received TDM 1 for 4 1/2 years. My liver enzymes were elevated and platelets low. I also developed nodular regenerative hyperplasia in the liver, subsequent portal hypertension resulting in ruptured esophageal varices, a very frightening and dangerous situation. I stopped Kadcyla 7 months ago, but the enzymes remain somewhat elevated and platelets low. It was a wonderful effective drug, but now without problems!
Kathy T

[Ceesun]

In a word....tough....Cathy P.S. Mountain Girl, I am Armenian, too!

[Mtngrl]

Oh, Ceesun/Cathy, how did you know I'm Armenian (kind of)? My mother's father was from Armenia. They came over before 1915, but had to hide from the Turks to get out.

[Saygoon]

I've been on TDM1 for only about four months now but no s/e at all. Guess we all react to drugs differently. 4 of the 5 met on my spine are gone, rib mets gone and pelvic mets shrinking. It has been a wonderful drug for me but......thanks for the warning I will keep an eye on the s/e's that you mentioned

[Mtngrl]

Saygoon--

So glad it's working so well for you! It is a wonder drug for some. I'm very glad it's available.

[michka]

Hi Amy. There is an old thread started by Waterdreamer called "TDM1 side effects". There may be more toxic effects reported now such as lung inflammation or nodular regenerative hyperplasia since more women are on Kadcyla and for long periods. Take care. Michka

[Mtngrl]

Thanks, Michka. That was informative (and a trip down memory lane. Some beloved friends who are no longer with us posted in it.)

[waterview99]

I am on TDM1, this is my 4th round coming up -- I have had arm and leg aches and intense pain in my hands 10 days after my third round, which is weird. Tingling yes, in feet and hands recently. Anyone else going through this? Any remedies?

[Barbara H.]

I believe that I was the first member on this website to go on the TDM-1 trial in Sept. 2007. At that time it was called Phase 1, open does escalation study of the safety and pharmacokinetics of Trastuzumab-MCC-DM!. I was originally diagnosed stage IIB or IIIA PR- in May of 1998. I did not know that I was Her2 at the time. I received AC and T and then radiation. My cancer returned in May of 2004 with a 3cm tumor to the prefrontal cortex with cancer in too many places to list. After surgery I went on Herceptin. I was NED for about a year and a half. At that point I added Navalbine. I did not care for it. By this point the cancer had spread to my bones and I eventually had hip pain. In winter of 2007 I applied for the TDM-1 trial, but I failed the Muga test. Unfortunately, later I found out that the machine was at fault. As a result, I went off all treatment hoping that I could get into another trial. Unfortunately, the HER-2 cancer in the bone continued to grow and I was in quite a bit of pain. Fortunately, the trial opened in September. It was a truly a miracle drug for me. Within two weeks I was pain free. Unfortunately, I also developed the same lung disease as you and had to go off of it after about two years. My liver tests eventually returned to normal. I also had nose bleeds and my nose ran more than usual.

I was at the Dana Farer for the entire day on my first infusion. I had chills and felt as if I had the flu after my first infusion. The problem was that I was teaching 3rd grade at the time and had to attend "Back to School Night". I had to give a speech and be with the parents for about two hours. I rested at home for about an hour. The nurses were horrified that I was going, because it was a new stage I trial and they did not know what my reaction might be.

I have been on Herceptin and Tyberb(4 tablets) since 2009 and remain in remission. I do have neuropathy, which I believe is mild. It seems to be increasing and I will probably mention it at my next appointment. I continued to teach during all of my treatments, but am now enjoying retirement since June of last year.

Best,
Barbara H.

[KeriK]

I have been on Kadcyla for over 2 yrs now, NED for around a year! It has been a blessing for me.
The first 3 rounds were tough, flu like symptoms and a lot of pain. But it did get easier for me I do have neuropathy off and on. I take vit B6 and L-Cartine for it. If I run out and forget to pick more up, the tingly seems to come back. So I think the vitamins really help
Yesterday my tumor markers have increased, tripled since last time!! :(
Dr will retest in 6 wks. I really hope this is not the end of kadcyla for me. I'm still working and living a pretty "normal" life and worry that may all come to an end soon

[Mtngrl]

Finally, a year after I went off Kadcyla, my liver enzymes are back in the normal range and my platelets are only a little low.

I take L-Glutamine for neuropathy.

[Rupali]

I have done 6 cycles of TDM1 and got very good response. My doc says that the cancer is almost gone. It was extensive in bones, lung, liver and brain. I am planning to continue for another 6 cycles at 3-4 weeks interval and then go on for a 6-8 weeks interval if everything stays ok, I wish so much it stays ok.
Anyone has tried this kind of protocol

[karina14]

I have just started Kadcyla (changing from Herceptin+Perjeta which stopped working on my lungs) and so far no side effects other than mild constipation. Compared with other chemos this looks like a walk in the park. I am hoping TDM1 is the drug for me, otherwise the lymphangitic spread from the lungs will stop my fight early, although I am in good shape at this time.

[vqtilley]

Hi, all - my first post on this wonderful forum! I just started Kadcyla on Friday, waiting for side effects. Very curious about Rupali's experience of brain met/s disappearing - I thought Kadcyla didn't cross the BBB? Very good news if it does! I had a cerebellum lesion resected in January and have some faint evidence of leptomeningeal disease on MRI although it's not clear yet, so I'm worried my cancer has free rein in my CNS if I'm just on Kadcyla. Any details on this? Thanks! Will check other threads about milk thistle, etc.

[linn65]

I wondered the exact same thing about tdm1 passing the blood brain barrier. And so happy it does....right ??

[vqtilley]

I asked my med onc and he said transfer across the BBB is variable and not fully understood, so even though Kadcyla is a large molecule that normally doesn't pass through that doesn't mean none is. Radiation to the brain or brain surgery, which I've had, can make the BBB more permeable, for example. But I'm still not feeling too secure about this on Kadcyla. Platelets have plunged to 50,000 on day 7, btw.

[karina14]

There is a recent study od TDM1 and brain mets:
http://www.clinical-breast-cancer.co...14)00223-7/pdf
"Breast cancer brain metastases responding to primary systemic therapy with T-DM1."

Apparently there are few cases where the brain mets have responded to TDM1, but not many. And looks like it crosses BBB because this one is damaged after radiation. This is one of the Clinical Points of the study:
- Ado-trastuzumab emtansine might also cross the BBB but its true level of activity in the CNS is inadequately defined.

[vqtilley]

Thanks so much, Karina, I'd be really interested to read the article but the link doesn't work and Google/Google Scholar searches on the title only bring up the abstract with no free full text option. Any tips on where the full text might be available?

[karina14]

Hi vqtilley,

In a different thread I have seen instructions how to access pub med docs: http://her2support.org/vbulletin/showthread.php?t=62247

I also found it here, but you need to create an account and request the doc. I don't know how to easily cut & paste the pdf to add it here... If not successful, send me a message.

http://www.researchgate.net/publication/257072265_Breast_cancer_brain_metastases_respondin g_to_primary_systemic_therapy_with_T-DM1

[karina14]

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?

[waterdreamer]

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.

[Dakini52]

Are Kadcyla and TDM1 the same thing?

[KDR]

Yes.

Karen

[phil]

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.

[Rupali]

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

[Rupali]

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

[Mtngrl]

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

[vqtilley]

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/David_Aguiar_Bujanda/publication/266475985_False_elevation_CA_15-3/links/5432fe570cf225bddcc99a8a.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."

[phil]

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 .

[Rupali]

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

[karina14]

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.

[Rupali]

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

[phil]

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.

[linn65]

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.

[waterdreamer]

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.

[CoolBreeze]

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.

[phil]

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

[vqtilley]

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?

[gramen]

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/advanced-breast-cancer-update/first-line-treatment-of-her2-positive-metastatic-breast-cancer

[Mtngrl]

I have an update to my initial post. I'm back on Kadcyla as of June 3, 2016 and I am not experiencing any new side effects. Liver enzymes and platelets are normal. In fact all my CBC and metabolic panel numbers are normal. (I don't get tested for tumor markers, because I'm one of those people whose tumor markers never change.)

I'm not having trouble breathing. I'm not getting headaches. I have mild neuropathy, but Abraxane causes that. I don't even have diarrhea anymore, after several years of having it more or less constantly. My blood pressure is on the high side most of the time, but I've had some low-to-normal readings as well.

I have acid reflux, but it hasn't gotten worse. I take Nexium and Zantac twice a day each to control that.

The major difference between then and now is I used to be living in an old apartment building in Boston and I now live in my own house in Denver, Colorado.

Both the reflux and the neuropathy seem to be aggravated by environmental factors. I have become extremely sensitive to all manner of volatile organic compounds--diesel fumes, smoke, chlorine, pesticides, air fresheners (especially the solid or plug-in ones), perfume, mold toxins, and who knows what else. I have roommates, but since I control the space I'm able to have a fragrance-free house most of the time. I'm wondering if the change of environment is the reason I'm tolerating Kadcyla so much better.

[lovemylipstick]

Hello everyone... could you tell me what CA stands for ? I read your comments and keep seeing CA with your numbers and I dont know what it is abbreviated for. Thank you.

[Mtngrl]

It refers to tumor markers in the blood. That's a way to monitor the cancer. Rising markers can mean more cancer; markers in the normal range are considered a sign of good control. Since I've always had normal tumor markers, we don't even bother looking at them anymore.

Amy

[lovemylipstick]

Thank you! I dont have the tumor marker. I went back to all my lab works looking for CA !!! couldnt find it well now I know why. Again Thank you for reply Mtngrl

[TiffanyS]

There’s a couple of different types of tumour marker tests, and your doctor has to order them. I know in Ontario, OHIP will only pay for the CEA test once a month. So far, I’ve had the CEA and CA-30-15 blood tests twice, and both times they were normal. I don’t think these tests are very accurate for me, and that I'm one of those people who never get elevated antigen levels. That being said, I think I’m due for both of these tests again, just to make sure they haven’t gone up.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled