Treatment after Kadcyla?
 

Hi All,


Well looks like my time on Kadcyla may have come to an end.
Ct report received today and apparently I have a shadow in liver. It is in approximately the same place as previous liver met. Ct consultant "sitting on fence" about it!


Does anybody know what is given after Kadcyla. I'm guessing back to Herceptin will be the 1st thing. Concerned that no other good drugs are available in Scotland. Already had Docetaxol, Herceptin, Perjeta, Tecentriq & Letrozole.

I have been on Kadcyla for about 18 months but have had breaks due to high bilirubin. The last break was 10 weeks which I think was too long & may have had an impact on this result.

On a plus point nothing new reported.

Any thoughts or suggestions appreciated.

Juls

Re: Treatment after Kadcyla?
 

Juls

Look up the work of Dr Linda Vahdut. She is a physician not an alternative practioner. She has been treating triple negative breast cancer with a copper chelator known as Ammonium
Tetrathiomolybdate. First she acheived NED status with chemo then started copper reduction. With chemo alone these triple negative breast cancer patients should have relapsed in a year using the usual statistics. She has kept some NED for as long as four years.

Copper is essential for angiogenesis or blood vessel production by the cancer cells. In theory the type of cancer means little.Pancreatic cancer cells, breast cancer cells, etc etc all use copper for angiogenesis and angiogenesis is essential for cancer growth. Check this out yourself. There are pharmacies that compound Ammonium Tetrathiomolybdate capsules with a doctors prescription.Other people may have other ideas, other chemos or clinical trials

Paul

Re: Treatment after Kadcyla?
 

Juls sorry to read this, I'm not a million miles away from you in Ireland and my son and his family live in Edinburgh,

I'm sorry I can't really help much with your question but saw a similar question on bc.org and thought some of the replies may help https://community.breastcancer.org/f.../topics/853037

Re: Treatment after Kadcyla?
 

Hi Juls,
Sorry to hear this. Might be an idea to find out about what trials are available. I have heard of promising results from Herceptin + Keytruda, and there is some new formulation of Herceptin - trastuzumab deruxtecan (a bit like Kadcyla). Also Ont 380 and Margetuxumab - probably still at trial stage. I wonder if Tykerb is being used much now? These are all Her2+, and I guess there are plenty of non-targeted options. Bewildering, but good luck with finding a new treatment plan.
Best wishes.... Pam

Re: Treatment after Kadcyla?
 

Hi Paul,Tricia & Pam,

Thank you for your replies!
I'm meeting my Doctor this afternoon so hopefully will get some info from her. I have also noted your suggestions for discussion with her.
I think part of problem with my Kadcyla treatment was that it was a trial and therefore bound by trial rules. A few months ago I came off trial because time barred( bilirubin too high & over by 1 day) but was still bound by rules as I was getting 6 weekly CT's. Doctors thought this was way to go. I now think I should have gone back to NHS rules & would not have missed so many treatments. Less Ct's but more treatments!

Will update later.


Juls

Re: Treatment after Kadcyla?
 

Hi Juls. I have no advice to offer you but send my best wishes to you for the future. Treatment is a whole different ball game over here, isn't it? Nancy

Re: Treatment after Kadcyla?
 

Hi Juls;

I am not familiar with your pathology so really can't offer suggestions except to ask if you have had any genetic testing of your mets? I have discovered that cancer does mutate more than we realize and that offers us additional treatments. Best wishes to you Juls.

Cathy

Re: Treatment after Kadcyla?
 

Hi Nancy

Your right! So many drugs not available to us!


Juls

Re: Treatment after Kadcyla?
 

Hi All,

Yesterday better than expected.

Firstly got discharged from Ortho consultant re tiny bone met which has not changed in nearly 3 years. He feels x-ray every few months along with 6 weekly CT's too much. Just to call him if concerned or in pain.

Oncologist had a few suggestions for future treatment:-
Can continue on Kadcyla for a few more treatments until next Ct which would now have to change to 13 + weeks instead of 6 wkly. Treatment would still depend on bilirubin level but they would not be tied to trial rules/paperwork.

Go on a chemo - but would have hair loss again plus other side effects.. Oncologist didn't want to do this at the moment as only 1 met to worry about.

Go on AI tablet or injection.
or
Ablation & AI tab or injection.

I decided on referral to liver specialist re ablation & tablet (start now) This would have to be done asap.
If not suitable for ablation other treatments still on table. If I do others first and fail, ablation no longer an option.

Also Kadcyla still available for the future!
Zometa 12 weekly.

The only thing missed was Herceptin - but think just an oversight in a long discussion!
Geez - hope I've made right decision!!

Any thoughts etc welcome!

Take care
Juls

I am triple positive. High Er & PR

Re: Treatment after Kadcyla?
 

Hi Juls,
Sorry to hear about the shadow :(
Why not stretch out kadcyla and add in ai? Seems like it's giving good control everywhere else, (no new spots is GREAT!!!) would adding in ai be enough? And is the growth rate slow enough to wait and see? Hope this isn't muddying up your thinking - there is never a clear cut answer with cancer.

I stayed on herceptin, perjeta, avastin, xgeva for about a year with some progression and some regression. Just recently had a biopsy and am awaiting FOUNDATION ONE results...then will try to find a clinical trial or something.
Good luck to us both!!
xoxo
Flori

Re: Treatment after Kadcyla?
 

I'm so sorry you're having to deal with this. While I like having options, it's so hard to know what to choose to do when so many options are put on the table. That said, is perjeta with herceptin an option?

Let us know what you decide and how it goes. Keeping you in my thoughts and prayers!

Re: Treatment after Kadcyla?
 

Hi Cathya

Thank you for your reply.

The trial I've just come off did a genetic test on original tumour last year. Report only given to oncologist if you fail trial due to progression. Think I've ticked that box now!!

I'll remind Oncologist to request this report asap. Could be interesting!


Juls

Re: Treatment after Kadcyla?
 

Hi Flori,

I asked for an AI a few times over the last year while on Kadcyla but always told not given together!

Oncologist was "willing to be persuaded" to keep me on Kadcyla for a few more cycles, only because I had missed so many & the hope was that bilirubin had settled enough to allow treatment 3 weekly. Scans would change to 13/14 weeks from 6 weekly as no longer on drug trial. Risk being that treatment still inconsistent & I could get a lot worse! They were using 6 weekly CT as guide.


That's interesting that you stayed on a previous treatment with progression and regression. Here they seem to take you off treatments immediately.

I think I might be waiting on similar report to you - foundation/genetic test - part of trial I've just failed. Wonder if it will show up something relevant!

Meanwhile I have started Aromasin (3rd day) but this is all I'm getting at the moment.

Waiting to hear from Liver Specialist/ Integrative Radiologist this week.
Hope he can explain this shadow better than Onc & Radiologist. If its a tumour why don't they say that!


As you say Flori - Good luck to us both!

Re: Treatment after Kadcyla?
 

HI Lucy,

Yes - difficult to decide. Hope ablation is an option.

I had Herceptin and Perjeta a few years ago. Got about 30 months on it before a bone met found. It was a trial drug and immediately stopped when met found. Don't know if you can go back on it - been turned down in my area of UK anyway!


Take care
Juls

Re: Treatment after Kadcyla?
 

Juls,


I am so happy you have a number of options to explore/employ! That is always good news. I do think we all should keep an ear out for what Paul (Donocco) was discussing, copper chelation. Cancer uses copper to grow and it is in nearly every multi-vit out there. I have tried to find one without it and have failed, so no multi for me! Oddly, copper is found in most dark greens, grains, nuts and legumes, all of which are considered excellent additions for heart healthy and anti-cancer diets. Hmmmmm.....however, removal of copper, known to feed cancer, from our blood via chelation would leave the other healthful nutrients intact. I think Dr. Vahdut is on to something and urge you to explore her findings. Please share what you learn!


https://meyercancer.weill.cornell.ed...ents-high-risk

Re: Treatment after Kadcyla?
 

Hi Laurel


Will research copper chelation asap. I think Ann/Agness posted about this as well.

Juls

Re: Treatment after Kadcyla?
 

Juls;

I posted about the treatment I am on now. Ibrance and Letrozole. It is used for ER/PR+ her2- but I found a woman who is on this drug and she said her oncologist told her that it targets the hormone side and there is no reason that it wouldn't work for Her2+'s. Apparently they are running trials now on Her2+'s. I am just finishing my 2nd cycle (pill form) and won't know the results (other than my TM CA125) until scans are run mid July. This is definitely a treatment option for you. Lauren who is Her2+ is on a similar cycle to me so no results yet but I will be checking with her in July and posting her results.

Cathy

Re: Treatment after Kadcyla?
 

Juls

You mentioned being told that Aromase Inhibitors are never to be given with Kadcyla.
Im curious where these oncologists got this info. Kadcyla is Herceptin with a chemo drug attached to it. I think the chemo drug is called Emtansine. Aromotase Inhibitors prevent
the formation of a weak estrogen, Estrone from a weak androgen called Androstendione.
It doesnt make sense that the two cant be given together.

To be sure I called Genentech and they saw no probem using the two. There are clinical trials going on combining AIs with kadcyla. Both drugs can cause musculoskeletal pain but I doubt this is the reason they arent using the drugs together. Can you ask the oncologist about this?

Im thinking about your interest in copper reduction. My guess is if you mention this to the oncologist he or she likely will see it as something of little value and the work of Dr. Vahdut shows that isnt true. I dont like contradicting the oncologists but something doesnt make sense I have to point it out,like using AIs and Kadcycla together.

In simple language, cancer cells are dependent on angiogenesis (blood vessel formation) to grow.Many of the proteins involved in angiogenesis like Hypoxia Induced Factor and Vascular Endothelial Growth Factor are very copper dependent for their functions. I always have believed knowledge is power.

Paul

Re: Treatment after Kadcyla?
 

I don't know if this has anything to do with what you are talking about re: AI's being used with Kadcycla but according to Lauren's Onc when Ibrance was approved they did it for the Her2-'s in order to rule out her2 variability and fast track it. Now they are running it with Her2+'s in trial. Could this apply to Kadcycla as well?

Cathy

Re: Treatment after Kadcyla?
 

Hi Paul

That's interesting. I have asked twice for an AI with Kadcyla. 1st time last year to trial Oncologist & told no! I wonder if that was because of trial protocol!
2nd time was only a few weeks ago when off trial to my NHS Oncologist - again told "no". I think I'll have to mention this again (very carefully!!) & see if I get any reason or explanation.

Have been reading about copper chelation - although most info seems to be about triple negative. Will continue looking it up.

Many thanks

Juls

Re: Treatment after Kadcyla?
 

Hi Cathy,

Looking forward to your report in July. Would be great if it works for all.

Juls

Re Ibrance- checked online to see if given in UK. Finally approved in Scotland in December last year.

Re: Treatment after Kadcyla?
 

The angiogenesis inhibiting effect of copper reduction is general. Normal cells in your body also use copper but it seems that copper reduction is not that toxic to normal cells. Perhaps they are far less involved in angiogenesis minute by minute than cancer cells are. The main side effect of copper reduction is anemia if the copper levels get too low.

I dont see why you have to ask very carefully. Yet I have to be careful of being intrusive when Im trying to be protective. I guess being a pharmacist Im less in awe (for lack of a better word) of doctors. Naturally Im rarely their favorite patient, in fact never if I have to be honest. If you find it hard to confront them let people on the board help you.

Ill tell you a story. I once did a foolish impulsive thing. I was working with a breast cancer group on AOL perhaps 17 years ago. I had just read Dr.George Brewers work on copper reduction.He was the doctor who thought of the idea. He was an expert in the treatment of Wilsons disease which is a disease of copper metabolism that can be controlled by copper chelators like Penicillamine and Trientene. He also introduced zinc salts as a treatment for the disease as elemental zinc 50mg taken 3 times a day prevents copper absorption from the intestine. If a patient takes this prescribed zinc a protein called Metallothionein forms in the intestine and this protein absorbs copper (ie chelates it) and prevents its absorption from the intestine into the bloodstream.

I was trying to get this AOL group interested in copper reduction as a cancer treatment. I began to feel like a Bible Belt Preacher from the deep south in the USA, preaching "salvation from copper reduction." My preaching had little effect on the "congregation" so I tried a different approach.

I told them I would be the guinea pig and started taking 50mg elemental zinc three times a day. Zinc is OTC. I did this for about two years. Maybe I could prevent cancer from developing in myself and maybe I could help these women and get them to talk to their doctors about copper reduction.

To make a long story short ,one group of lab tests showed me I had a hematocrit of 37, normal being about 42. The doctor at the clinic bluntly told me I probably had right sided colon cancer which is characterized not by bowel symptoms but by anemia, as the tumor bleeds slowly day by day. Very compassionate telling me bluntly "You probably have cancer."

Eventually I realkized that the anemia probably was from too low a copper level due to the zinc I had been taking so I stopped taking the Zinc and took a copper supplement. I had a lab test 3 weeks later and the Hematocrit was up to 41 so it very probably was anemia due to too low copper. I swear the doctor was disappointed. She looked at my chart, signed it angrily and walked off without saying a word to me. I imagine I wasnt her favorite patient.

Motto1 a pharmacist who treats himself like a doctor has a fool for a patient.

Motto2 Zinc itself can be used (under a doctors supervision) for adequate copper reduction. The problem is that zinc acts slowly ( years vs months) as the body has extensive copper reserves

Paul

Please forgive any misspellings

Re: Treatment after Kadcyla?
 

Hi Paul,


Yes - not good at confrontation! Just meant I didn't want to rock the boat. I'm sure they just love my questions!

Spoke to my Nurse this morning regarding referral to liver specialist re ablation & Herceptin. No word about ablation & that's another week passed!
A bit shocked to be told that I don't get Herceptin as they consider I failed it! To get aromasin and zometa only.

I'm triple positive & now concerned that aromasin not enough.

Just another thing to be concerned about!
Juls

Re: Treatment after Kadcyla?
 

Still waiting for ablation consultation/procedure!

So much for being seen in a few days. When he eventually replies, I'm going to need another CT and possibly a liver MRI (if area in liver is still suitable for ablation).

Consultant Radiologist was contacted 15th June regarding ablation. Turns out he is now on holiday to 9th July! No-one bothered to contact and advise of this & I'm now getting the run around from hospital. Apparently I've just to wait until he replies!

Scotland only has 2 Consultant Radiologists who do this procedure - both based in same hospital . 2 problems there- 1 on holiday and no-one seems to know the other one?!!

Does anyone know if Aromasin on its own is enough?

Juls

Re: Treatment after Kadcyla?
 

Juls

I dont think so. Not if you are Her 2 Neu positive. I dont see how it could be. Even if you were just ER positive an Aromatase inhibitor by itself probably wouldnt be enough unless you are getting Zoladex (a drug that shuts down estrogen production) or have had an ovarectomy. Im pretty sure of this. Aromatase inhibitors prevent the production of
estrogen from non ovarian sources such as fat tissue and the adrenal glands. Aromatase inhibitors are used extensively but Im pretty sure you have to control ovarian estrogen production first. If a woman is post menopausal AIs could be used alone.Another scenario.

You need an anti Her2 NEU drug also. Speak with the doctor. Perhaps Herceptin might help. If you have problems confronting the doctors perhaps a friend or family member could do it for you

Paul

Re: Treatment after Kadcyla?
 

I was on a trial for Kadcyla & Keytruda and they have failed. Not sure what my next move will be. I'm curious to know what ai is that is added to Kadcyla. I'm also thinking about the HER2CLIMB. My doctor at Dana Farber wants me to try the SPORE trial, but it's weekly and I just can't afford to fly to Boston weekly. It was very expensive flying in every 3wks. Just not sure what direction to go. I'm ER & PR negative. I'd welcome any input

Re: Treatment after Kadcyla?
 

Valleygirl;

Years ago, if I'm remembering correctly a member, madubois63 (I believe), used to get free flights. There was/is an organization which offers this for cancer patients. I'll look back on some of her old posts for information but you might check around for new, similar services.

Just checked and Becky commented on this years ago:

You can contact your local Komen affiliate. If their branch charter doesn't do this, the National Komen in Dallas gives out these funds if you qualify. I don't know about the airlines. You might just want to call their reservation toll free number and they might know who to call at that particular airline. The American Cancer Society also gives out this kind of money. Their toll free number is 800-227-2345.

Also Soccermom said:

"Angel Flights" will fly the patient and one other passenger free of charge.

https://angelairlinesforcancerpatients.org/

I flew with them to Houston (MDAnderson) from Gulfport Mississippi and when we landed a "Ground Angel" picked me up and delivered me to the hotel.Same on the retun home. They are truly ANGELS!

My best,

Cathy

Re: Treatment after Kadcyla?
 

Hi Paul

Thank you for your reply.

My feelings exactly - I don't think AI (Aromasin) enough.

When I agreed to this treatment I thought Herceptin would be given 3 weekly by injection. It wasn't until after the consultation that I realised Herceptin not mentioned (thought it was an oversight in a long conversation). I called Hospital next day to be told they consider I failed Herceptin so not being given again.

I have called numerous times in last few weeks but not getting any help.
I have now been waiting 3 weeks for an appt that was to happen in a few days!

5 years ago I was referred to the same Doctor. By the time he replied the liver met had responded to chemo so ablation put on hold!
Now its back & I'm still waiting!

Juls

Re: Treatment after Kadcyla?
 

Juls

What about Perjeta. I dont know if alone it will do anything but Ill see what I can find.
Perhaps Perjeta plus Lapatinib. Neryx (Neratinib) might work better but I kind of doubt NICE
has approved it.

Re: Treatment after Kadcyla?
 

Thanks Paul,

I had H & P on a trial a few years ago. I got 30 mths on it before bone met found. Perjeta was stopped immediately met found but Herceptin continued! To date Perjeta not approved here.
I think Lapatinib approved in Dec 17 & have heard of Neryx but no idea if its an option.

I've asked for a call from my Oncologist to discuss treatment etc.

Juls

Re: Treatment after Kadcyla?
 

Got call back from Oncologist last weekend & had appt yesterday.

It was not the best appt I've had! To say disappointed and angry is an understatement.

Still waiting on appt re liver ablation. They have decided that I must have liver MRI so I suppose that's a step forward.

Herceptin won't be prescribed. Turns out that I should not have had Herceptin when I changed to Xeloda 2 years ago. It was my Onc who thought it might just help so prescribed it. Didn't tell me this either, so this is where confusion set in for me, as I thought Herceptin always given. To continue on Aromasin & Zometa (12 wkly).

If I get worse while waiting! Tough!

I thought the idea was to try and stop any progression.

Think I rocked the boat!!

Juls

Re: Treatment after Kadcyla?
 

Hi Cathy

Have you had your report yet?

Still waiting on mine.

Juls

Re: Treatment after Kadcyla?
 

Juls,


This is so frustrating! Keep rocking that boat! Being your own advocate is exhausting. I hope you get the MRI quickly.

Re: Treatment after Kadcyla?
 

Juls;

My scan is Tuesday and my next meeting with my onc is August 2nd but I will be checking on the scan results at least asap. One thing though is that my CA125 which was 359 at the high is now 20 so something is working! Don't know if you noticed that I asked my oncologist for the latest, greatest treatment once herceptin stops working and he is very keen on GW25. I was talking to Flori and she said Dr. Pegram also likes it. I will post as soon as I have any results from all of these genetic tests and scans regarding Ibrance.

Cathy

Re: Treatment after Kadcyla?
 

Juls

As far as I know Herceptin use has nothing to do with Xeloda. The closest thing would be the combination of Lapatinib 1250mg daily (Lapatanib= Tykerb) plus Xeloda 1000mg/m2 twice a day. Lapatanib is an anti Her 2 Neu drug so this Tykerb-Xeloda combo includes something against Her 2 Neu which is needed. Keep fighting for yourself.

Paul

Re: Treatment after Kadcyla?
 

Hi Cathy,

That's a big difference in CA125! (Don't get that info here)
Don't know anything about GW25 so must look it up. (Probably unlikely to get here unless on a trial).
Looking forward to your post re Ibrance!

Juls

Re: Treatment after Kadcyla?
 

Hi Paul,

Don't think I've to get any combination at the moment. If I get worse another chemo will be given! Meanwhile just to have Aromasin with zometa.
This is 1st time in over 5 years that I haven't had Herceptin and I'm concerned. She was scathing about the Herceptin in kadcyla - said it was just a carrier!

A bit disappointed with consultation - its the first time I've queried my treatment and I am surprised at how negative meeting became.

Juls

Re: Treatment after Kadcyla?
 

Jules

Ive wondered about that myself the Kadycla -Herceptin as carrier thing. Not even close to being sure. The dose of Hereceptin given weekly is 4mg/kg loading dose then 2 mg/kg weekly IV. Not 100% sure of these numbers but will double-chek.The dose of Hereptin every 21 days is 8mg/kg loading dose then 6mg/kg every 3 weeks. Pretty sure of this but will doublecheck.

The dose of Kadcycla the drug that consists of Herceptin- Emtansine conjugate is 3.6mg/kg every three weeks. Will doublecheck this but Im pretty sure. I apologize for the nonstop apologizing but its hard to accurately keep all of these numbers in your head.

To make things more confusing the dose of an experimental drug XXX-985, whatever which is an experimental Herceptin-Chemo conjugate like Kadcycla
is 2.1mg/kg every 3 weeks.

All of these differing Herceptin doses are going to given differing blood levels of Herceptin. Ill call Genentech or whoever makes Kadcyla about this. I find it difficult to believe you dont get a therapeutic dose of Herceptin with kadcycla
but if you do, why are the doses of plain Herceptin much higher than the Herceptin conjugates. Im sure there is a rational reason.

Paul

Re: Treatment after Kadcyla?
 

Juls

From what I have read now the Herceptin in Kadcyla is active as an anti-Her2neu medication. Kadcyla has the same FDA warnings for possible left ventricular damage as does Herceptin. Will call Genentech Monday. You still need some kind of anti Her2Neu drug it would seem. But the Herceptin in Kadcyla seems to be active not just a carrier molecule.

Re: Treatment after Kadcyla?
 

Hi Paul

I thought it must have some benefit. Particularly as my Oncologists next comment was "have to watch your heart." (Mind you, this was more to do with future chemo's and my heart being up to them)

Will be interesting to find out what Genentech say.


Don't think they will give me an anti her2 drug. Not sure if there is one available for me here.
I could ask to go back on Kadcyla depending on bilirubin level but if still high would be missing treatments again. Which is what got me into this situation.

Thanks again Paul!

Juls