Treatment after Kadcyla? [Archive] - HER2 Support Group Forums

Juls

06-13-2018, 05:07 AM

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

donocco

06-13-2018, 01:26 PM

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

tricia keegan

06-13-2018, 01:33 PM

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/forum/8/topics/853037

Pamelamary

06-13-2018, 11:16 PM

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

Juls

06-14-2018, 04:15 AM

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

nancy dip

06-14-2018, 02:14 PM

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

Cathya

06-14-2018, 09:33 PM

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

Juls

06-15-2018, 02:03 PM

Hi Nancy

Your right! So many drugs not available to us!

Juls

Juls

06-15-2018, 02:39 PM

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

SoCalGal

06-16-2018, 09:28 PM

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

Lucy

06-17-2018, 07:11 AM

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!

Juls

06-18-2018, 03:10 AM

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

Juls

06-18-2018, 03:48 AM

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!

Juls

06-18-2018, 03:54 AM

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

Laurel

06-18-2018, 06:09 AM

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.edu/news/2016-04-20/copper-depletion-may-reduce-breast-cancer-relapse-patients-high-risk

Juls

06-18-2018, 10:54 AM

Hi Laurel

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

Juls

Cathya

06-19-2018, 07:24 AM

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

donocco

06-19-2018, 12:01 PM

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

Cathya

06-19-2018, 03:14 PM

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

Juls

06-19-2018, 04:12 PM

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

Juls

06-19-2018, 04:26 PM

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.

donocco

06-19-2018, 05:33 PM

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

Juls

06-20-2018, 04:05 AM

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

Juls

07-02-2018, 07:32 AM

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

donocco

07-02-2018, 10:05 AM

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

valleygirl

07-03-2018, 06:54 AM

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

Cathya

07-03-2018, 08:50 AM

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

Juls

07-03-2018, 02:25 PM

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

donocco

07-03-2018, 05:09 PM

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.

Juls

07-04-2018, 02:59 PM

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

Juls

07-13-2018, 06:46 AM

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

Juls

07-13-2018, 06:48 AM

Hi Cathy

Have you had your report yet?

Still waiting on mine.

Juls

Laurel

07-13-2018, 10:57 AM

Juls,

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

Cathya

07-13-2018, 02:06 PM

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

donocco

07-13-2018, 02:27 PM

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

Juls

07-13-2018, 03:39 PM

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

Juls

07-13-2018, 04:06 PM

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

donocco

07-14-2018, 11:43 AM

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

donocco

07-14-2018, 12:17 PM

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.

Juls

07-16-2018, 03:10 AM

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

donocco

07-17-2018, 07:52 AM

Jules

My wife's daughter is visiting from Texas with the grandkids. Ill have to wait until Wednesday to call Genentech. The point is, the dose of Herceptin in Kadcyla is sufficient to
inhibit Her2 Neu protein even though it is lower (3.6mg/kg every 21 days rather than 6mg/kg every 21 days. Ill find out why but its purely an intellectual exercise. Perhaps the chemo attached to the Herceptin in the Kadcyla molecule makes the drug bind more tightly to the Her2neu protein receptor. Im intellectually curious but its not clinically importantapparently. Whoever told you the Herceptin (Trastuzumab) in the Kadcyla molecule is just a carrier for the chemo seems to be incorrect. I printed a long article about Kadcyla and it states again and again that the Herceptin part is active

Paul

Juls

07-17-2018, 11:12 AM

Hi Paul
Interesting! It was my Oncologist that told me it was only a carrier.

Thanks for doing this Paul!

Juls

donocco

07-18-2018, 01:29 PM

Jules

I contacted Genentech and it seems my reasoning was basically correct. The Emtansine attached to the Trastuzumab molecule causes the complex to bind tightly yo the receptor allowing a lower Trastuzumab (Herceptin) dose to have a definite anti-Her2Neu effect

The Herceptin (Traztuzumab) in Kadcyla is active anti Her2Neu drug not a carrier molecule. Maybe you can bring this up with your oncologist. He or she can call Genentech from the UK

Paul

Juls

07-19-2018, 06:29 AM

Hi Paul,

Will do!
I wonder if she was just brushing me off or didn't really know!

Thanks again.
Juls

donocco

07-19-2018, 11:52 AM

Juls

It is hard to say. I dont know the politics of health care in Scotland. If she is brushing you off that is wrong and immoral. Im sure it is obvious to them you are non-confrontational.
Obviously it is wrong and dangerous to make statements about complex medications that you havent researched thoroghly.

You are a private person, very "nice" (for lack of a better word) but I would guess
you are very complex and you keep a lot inside without expressing it. Is there a friend or family member who can do the confronting for you? If so, contact that person.

Juls

07-20-2018, 04:30 AM

Hi Paul,

Not sure if any of us know Health Care Policy here! It's only when flung into it that you become aware of the rules and regulations. I certainly didn't realise how many drugs not allowed here.

I did have my Husband with me at last 2 appts. He was not happy with last consultation in particular. He felt that we got her "on the back foot" as she did not realise I was well informed!

Juls

PS - Yes - I am a bit of a closed book!!

donocco

07-20-2018, 10:29 AM

Juls

About 38 years ago when I was in the Public Health Service I was stationed in Phoenix Arizona. I was so glad to get a transfer from the isolated Indian Reservation.

Anyway I had a girlfriend from England, Marilyn. She was sweet, introverted, very sensitive and very very artistic. I guess what attracted me to her was her sensitivity because the overly intellectual person will bond to his opposite.

I dont want to get into England vs Scotland "problems" but my guess is that this personality is common in the United Kingdom. Just a guess

Juls

07-23-2018, 05:02 AM

Hi Paul

Reserved is a good word!

Juls

Juls

07-23-2018, 05:04 AM

Hi All,

On another note :-

After nearly 6 weeks wait for "an appt in a few days" - just received letter for MRI appt in 2 weeks time!

SoCalGal

07-26-2018, 06:06 PM

Juls-are you looking into any clinical trials? Flori

Juls

07-27-2018, 11:20 AM

Hi Flori,

Good to hear from you.

Haven't looked into any trials recently. Haven't been offered any either!

Have you been taken off all treatment at the moment?

I'm on Aromasin & Zometa (12 wkly) only with nothing for Her2. It's the first time in over 5 years that I haven't had Herceptin.

I will have a look at the trials you mention in your other post.

Take care

Juls

Juls

07-27-2018, 11:25 AM

Just been told that MRI reports taking 4-6 weeks minimum at the moment. So not only have I waited 7 weeks for appt etc. I have now to wait another 2 weeks after MRI for Doctor appt & might not get any info!

So much for urgent!

SoCalGal

07-27-2018, 11:32 AM

Hi Juls—glad you’re on something!! Consensus in the mets community is staying in herceptin even after progression offers benefit. Hope your onc will add it back in. Nothing to loose!!

I am off all treatment - I was trying to stay washed out so I. Hold jump on a trial. If I’d known it took so long I would have done something but now it’s close to trial time I HOPE!!
Sending hugs...❤️
Flori

valleygirl

07-27-2018, 12:20 PM

Hi SoCalGal,

What trial are you going on? I've been approved for the HER2CLIMB, waiting to hear if I get approved for DS-8201a in Human Epidermal Growth Factor Receptor 2 (HER2)-Positive Breast Cancer. So hard to decide. I know you don't lose your hair on the HER2Climb and side effects are doable. I haven't got a straight answer about hair loss with NCT03248492 and I think effects may be worse. I haven't been on any treatment for 8 weeks now. I haven't been able to find anyone on NCT03248492 to ask. Always a roller coaster ride

Juls

07-27-2018, 01:10 PM

Hi Flori.

Yes- thought it would still be prescribed and give me some benefit. When I asked a few weeks ago was told "No" as I had failed it!

Similar to you, Doctor wasn't giving me another drug until ablation procedure. Just wasn't expecting 7+ week delay. Like you would have done something sooner.
In hindsight should have insisted on staying with Kadcyla until ablation due.

Fingers crossed for trial.

Juls

Juls

07-27-2018, 01:26 PM

Hi Valleygirl,

Both these trials sound interesting. Can't find much info about NCTO3248492 trial either.

Juls

SoCalGal

07-27-2018, 02:40 PM

Juls, hope you convince your doc to add back in herceptin. It's your life. There is support material, you can spend some time googling if you need. I wish I could find my file, if I do, I'll post.

Valley girl - UCLA has DS8201a open slots. Dr said no hair loss in her patient who is on it - side effects not too bad, early results very good. DS8201a (NCT03248492)

Other promising trials are ZW25 - which is at USC. ZW25 (NCT02892123)
I haven't met with them yet to know anything other than the slots open are single agent targeted.

If you can get tucatinib with xeloda and herceptin arm, that is also having VERY GOOD results and will be approved soon I believe. I have a friend doing very well on her2climb, no hair loss, she's on herceptin/xeloda/and presumably Tucatinib, sine it's been a year and she's stable and doing well. No one knows for sure, since it's double blind. Also--Tucatinib is small molecule, so good for crossing BBB.

SoCalGal

Juls

07-30-2018, 01:46 PM

Hi Flori,

I'll ask again for Herceptin.
Good luck tomorrow re trials info.

Juls

Just received Ct appt for 1 week after MRI. Both are for abdomen scans. Seriously?

Juls

08-31-2018, 03:35 PM

Hi All,

Just an update!!

Saw Consultant Radiologist re ablation this week. (Originally referred to him 5 years ago & then again 3 months ago.) To be honest wasn't sure he actually existed.

I am suitable for liver ablation & down as high priority! So should be done in next 4-5 weeks. Downside is that area concerned is on surface of liver & guess where nerves are on liver - so more discomfort/pain for me!
So far Aromasin working. Just as well because they still refuse to give me Herceptin with it.

Juls

Carol Ann

08-31-2018, 08:01 PM

Glad you are a high priority for the procedure ... hope they can have good pain meds available for your recovery.

Carol Ann

Juls

09-22-2018, 02:21 PM

A step forward.

At long last!

Got telephone call from Doctor's Secretary yesterday. Doc wants to do ablation on 3rd Oct

Guess where I'm spending my "big" birthday!
Geez!
Juls

Carol Ann

09-22-2018, 05:12 PM

Progress, YAY!!

Carol Ann

Laurel

09-23-2018, 05:10 PM

Well, even having the ablation on your birthday is still a great thing! What a battle you have had. I am honestly in awe of your toughness! You may be reserved, but I think you may have a bit of the "iron fist in the velvet glove" in you! Good luck with the procedure and I hope the pain will be minimal even though on the liver surface.

Juls

09-24-2018, 03:27 PM

Carol Ann -

Thanks! Slow progress but good!

Laurel -

Thanks for your kind words. I first asked for this procedure over 5 years ago. Been a long time coming!

Juls

Juls

10-04-2018, 02:36 PM

Ablation done yesterday.
So far so good!

Juls

Becky

10-04-2018, 03:06 PM

And Happy Birthday to you too

Carol Ann

10-04-2018, 08:06 PM

YAY!! And Happy Birthday!

Carol Ann

Melissa

10-05-2018, 11:45 AM

Juls,
Happy Birthday!
Sending healthy vibes your way!
hugs,
Melissa

Juls

10-05-2018, 12:13 PM

Thanks Becky, Carol Ann & Melissa,

Feel like I've been run over by a truck today!!

Juls

nancy dip

10-05-2018, 02:27 PM

best wishes for everything!! nancy

Donna H

10-10-2018, 08:25 AM

Sending hugs and strength your way (and belated Happy Birthday!)

Juls

10-12-2018, 10:09 AM

Thanks Nancy & Donna.

At hospital yesterday & all good after ablation.
My Bilirubin level has been an issue for months but in 1 week bilirubin level has gone down from 47 to 22.
Don't need to go back for 12 weeks!! Yeah!!

I asked again for Herceptin to be reinstated but told "no", to stay on aromasin with zometa. Going to continue stating I think I should still be on Herceptin.

Otherwise taking this as a win!

Juls

Unclaimed

12-09-2018, 02:29 PM

Hi Juls,
How have things been since the ablation? Any luck getting back on Herceptin?

SoCalGal

01-08-2019, 12:35 AM

How are you Juls?

Juls

01-08-2019, 01:23 PM

Hi Unclaimed,

Thanks for asking. Haven't been on here for a while.
Going for Ct this week to check Ablation area etc. Had little pain from it but have had a bit of cramping.

Oncologist still saying Herceptin failed me. So on Aromasin and Zometa only.

How are you?

Juls

Juls

01-08-2019, 01:38 PM

Hi Flori,

I've been better!!

Haven't been on site for a while.
Sciatica flared up just when ablation done. Got so bad I ended up at Emergency Dept. Still in discomfort and walking badly.

Due for CT's this week and a bit concerned. ( Really not happy being on Aromasin and Zometa only)

How are things with you? Glad that ZW25 keeping you stable.

SoCalGal

01-11-2019, 06:02 PM

Juls,
Sorry that you are not feeling well. Sciatic pain is horrible, I hope that you get pain managed and answers soon. Any chance of you joining a clinical trial?! Sending hugs and so much love <3

Juls

01-17-2019, 03:51 PM

Hi All,

Just out of hospital. Turned out sciatic pain is either cancer cell or new bone met in pelvis near groin. In exact position that I've felt nerve on and off over Summer. Got worse 31st Oct. & went to GP, A& E, A & E Consultant & Onco over last 10 wks.. Been going ever since! Everyone checked the numerous ct's,mri & x rays done between April/May until mid Oct. Nothing seen! Textbook sciatica! Finally my Onc Nurse (along with new private) Physio got suspicious - but they wouldn't give me scan until 10th Jan.
Well all went pear shaped - scan showed bone involvement, liver involvement and enlarged lymph nodes at leg area. Immediately 5 fractions of rad over weekend. Been treated to prevent paralysis. ( That's a joke because everything they did made spine worse!)
Got home yesterday but foot weak so have foot strap, zimmer and walking stick. Physio to come to house!
Saw Oncologist yeterday and told her speak to me when a plan properly formed.
Looking at new trial with herceptin again but Bilirubin could be issue & I would end up missing to many cycles.

She is going to write and ask permission of Scottish Med Board to give me Herceptin regardless but thinks unlikely they will approve.

Asked for analysis report from previous trial - in hope there is something that might be helpful ( she knows nothing about it so has to contact Senior Trial Doc - so going to take time & then its a German Company that deals with it.

other option Chemo / hormonal.

Family not happy about wait but can't be helped.

Any thoughts appreciated!

Just remembered Docs other comment " Don't think you and CT's a good fit!" Might have to send you for MRI's in future!

The plus point was liver ablation vg ( but other problems appeared still to be confirmed)

Juls

Laurel - think that iron fist is well out the glove now!!

Carol Ann

01-17-2019, 04:34 PM

Oh Juls, so sorry about all of this. Hoping your doc comes up with a viable plan SOON and you aren't in too much pain. Glad you'll be getting physio. I don't have any thoughts about how to go forward but wanted to let you know I am here rooting for you.

Carol Ann

Cathya

01-17-2019, 09:12 PM

Juls;

I'm sorry but I don't know your pathology. Are you ER/PR+? If so do ask about Ibrance/Letrozole combination. I have posted on it here and it is used for her2- and Her2+ Given in pill form it is very easy to take. I am hoping this will be of help to you.

Cathy

Juls

01-18-2019, 10:43 AM

Hi Cathya

I am strongly triple positive.

I have had letrozole before and just stopped aromasin last week because of this progression. Currently on no treatment. Radiation finished 16th Jan ( 5 fractions).

I have asked them to look at liver re Bilirubin level - no one knows why it raises (?). Other liver markers in normal range, no symptoms etc.
Get the feeling that they don't know what to do next!

Only discomfort is leg at radiation point. Hopefully it should ease!

Thanks for reply - much appreciated.

Any & all thoughts welcome!

Juls

Donna H

01-18-2019, 01:07 PM

Keep fighting the fight! Sometimes....ok, lots of times, the medical people are so annoying! Sending hugs and strength your way!

Cathya

01-18-2019, 02:07 PM

Juls;

Ask about Ibrance/Letrozole. I know it's working very well for Lauren who is also triple positive. I can ask her to contact you if you like.

Juls, I know it is written that Ibrance is for Her2- so your onc might not necessarily think of it but I suggest you push him/her. Here's a report and part I've highlighted

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6122240/

Ongoing and future palbociclib studies
As of February 2018, there were 70 ongoing breast cancer interventional studies that involve palbociclib. Select ongoing clinical trials to further assess the role of palbociclib in breast cancer are shown in Table 3. Currently, ongoing studies are evaluating the safety and efficacy of palbociclib in combination with endocrine therapy in patients with early breast cancer (adjuvant and neoadjuvant) and HER2+ metastatic breast cancer in combination with endocrine therapy, pertuzumab, and trastuzumab. Palbociclib is also being studied in patients with other tumor types, including gastrointestinal, and lung cancers.

My own oncologist said there are very positive reports coming for Her2+'s and Ibrance.

Cathy

Juls

01-18-2019, 02:50 PM

Hi Cathya,

Thanks - will add to list for discussion and do so more research. Unfortunately in my area (Scotland) info and discussion limited!! Think I did the talking at my last meeting.

Only thing that has been mentioned is a trial with a new drug similar to Kadcyla and Herceptin but not told which one!

Geez!

Juls

Juls

01-19-2019, 11:56 AM

Hi All.

Already a hiccup, Just received appt. for MRI/Liver. for 6th February.
Oncologists meeting regarding new treatment is 31st January. So obviously info won't be available. I'm guessing another delay.

Can see this going down with my family. Does seem like there is any rush!

Any thoughts welcome!

Juls

donocco

01-19-2019, 06:40 PM

Juls

Go to google. There were cases in Denmark in 1993 where breast cancer patients who took
390mg Coenzyme Q10 daily had the mets cleared. Interesting. You would think everybody would know od this but cancer is very political, a high class word for power and money.

Can yoiu buy Coenzyme 10i Scotland? I take about 600mg daily for a mild case of high blood pressure. You could take 200mg Q10 twice daily. No harm in trying.

Paul

Juls

01-29-2019, 10:21 AM

Hi Paul,

I can buy this here. Will look into it. I do have slightly low blood pressure so will research that as well.
Thanks Paul!
Now waiting to see if MRI is going to delay consultation/treatment decision on 31st.
Juls

Juls

02-02-2019, 11:22 AM

Hi All,

Had consultation on Thursday. Most questions from 2weeks ago unanswered.
Again team worried about bilirubin & that it might knock me off other trials and treatments.

Asked if any tests available for liver. Only test mentioned was for Gilberts Syndrome but I think this is unlikely. Test has never been done and Doctor just realised this!

Only treatment offered was Epirubicin - which I know little about.
Next morning got a phone call & Epirublin was mentioned. One of the 2 meant to be good for Her+!

Think I have to make my decision by next Thursday.

Any thoughts welcome.

Juls

donocco

02-02-2019, 12:40 PM

Jules

Epirubicin for all intents and purposes is a form of Adriamycin.It is an Anthracycline chemical and has the same side effects as Adriamycin such as hair loss, mouth sores, low white cell counts and possible cardiac damage. The dosage of Epirubicin is different than Adriamycin (say 100mg /m2 vs 50mg /m2 but I would consider Epirubicin to Adriamcin the same way as I would see Ativan to Xanax. Eprubicin as far as I kn ow has no anti-Her 2 Neu effect, it will reduce tumour burden.

Paul

Becky

02-02-2019, 09:19 PM

Prior to using herceptin, adriamycin and drugs similar to it were the gold standard for her2 positive bc. This is because it it very effective if you are also topo2 positive which about half the people who are her2 are. This is because the topo2 Gene lies very close to the her2 Gene and both get messed up and mutated. However, with herceptin, this didn't matter anymore so they moved away from those drugs. So, of they aren't going to be giving you herceptin, then this isn't a bad choice.

Juls

02-03-2019, 06:06 AM

Hi Paul,
Thank for your reply. I really don't know which way to go. Each time I speak to My Oncologist something else is mentioned. Then I'm left to research myself! I guess I have to reduced the tumour burden first. Although to date I don't know how many etc. Liver is the issue.
I have had 1 liver met on and off for 6 years & then I have a successful ablation on it but other liver mets appear within weeks!
Juls

Juls

02-03-2019, 06:14 AM

Hi Becky,

Thanks for your reply. Will look into all this later today.
Apparently there is a similar drug to Kadcyla (mono clonal ?) which was mentioned last week. Think Keytruda so will also look at that. It does look as if I'll have to start one of the old ones!
Told on 31st I had a few weeks to make a decision, now have to decide by next Thurs 7th - Due to platelets being low(?) First thing I note is Co-Codomal lowers platelets!
Thanks again
Juls

donocco

02-03-2019, 10:46 PM

Jules

The Acetaminophen in Co-Codomal has been known to lower platelets but it isnt that common.
Could the low platelets be due to another drug? From the cases I read, when the acetaminphen is stopped the platelets usually rebound.

Paul

SoCalGal

02-04-2019, 06:56 PM

Juls
Not sure why your onco doesn't seem forthcoming with info. I am frustrated on your behalf!!

Can you search with this link from breastcancer.org? they have a good metastatic search engine. Is there a search site that is specific to you? Can I help you search? And are you on any facebook groups? There are some very good ones online and you can post questions to lots of people and get info pretty quickly.

Here's the link to trial search:
https://www.breastcancer.org/symptoms/types/recur_metast/treat_metast/clinical-trials/mets-trial-search

ALSO:
DS8201 is her2 high and low, and good for ER positive. Are you limited to trials in Scotland only? Do you have friends and family other places so you can widen your search?

LMK how I can help!

Laurel

02-05-2019, 01:02 PM

Praying for you, Juls!

nancy dip

02-05-2019, 02:36 PM

Hi Juls. Not sure if this is helpful but I live in Glasgow and I had epirubicin. Was told it was good for Her2. warmest wishes. Nancy

Juls

02-05-2019, 02:53 PM

Hi Paul,

Also on Gabapentin and Amitriptyline. Just finished Dexamethasone. One minute its my platelets next its Bilirubin!
Juls

Juls

02-05-2019, 03:04 PM

Hi SoCalGal,

Think at the moment no-one sure which way to go. Consultation last Thursday was for Epiribucin. Friday morning Doctor called and suggested Eribulin. I have been researching today but no further forward. Will look on breastcancer.org. I was told by Onc. to look at McMillan Cancer site but info basic. Think trial taken away from me because of bilirubin.

DS8201 - will look into!

I have family in Canada.

Thanks Laurel!

Juls

Juls

02-05-2019, 03:12 PM

Hi Nancy,

I'm not so far way - an hour down the coast!

That's good to know. My Onc. did say it was good for Her2+. I am a bit concerned about starting it this week as I am still recovering from radiation treatment which has left me walking with zimmer.

Regards
Juls

How did you find it?

Regards

Juls

donocco

02-05-2019, 03:28 PM

Jules

I took a quick glance at DS8201. It is Herceptin combined with Deruxtecan and seems to have a good effect in the phase i studies. I tried to find out what Deruxtecan is and didnt have much luck but it probably is frelated to Topotecan (Hycamptin) which is a topoisomerase inhibitor like Etoposide. May be worth looking into

Paul

PS I had no idea Adriamycin was a topoisomerase inhibitor until Becky put that post on the board.

Juls

02-06-2019, 01:01 PM

Hi Cathya,

Forgot to say I have had Letrozole.

Juls

Juls

02-06-2019, 01:04 PM

Hi,

Another change - blood test good. So I have to decide tomorrow and start a Chemo next Thurs 14th!

Geez!

Juls

nancy dip

02-06-2019, 01:16 PM

Hi Juls. I won't pretend it was easy.....hair loss, fatigue but took anti nausea meds so that wasn't a problem. Fatigue was worse first week and I was almost back to normal by time for next dose. I'm not sure, but don't think we've as much choice of treatment as people in USA and you have to do something! I was treated at Gartnaval. Hope you get good answers soon. Nancy

Juls

02-06-2019, 04:03 PM

Hi Nancy,

Have to agree - very little choice here!
Told I'm in the best place (Beatson)
Hopefully some answers tomorrow.

Regards
Juls

Donna H

02-07-2019, 10:37 AM

Sending good thoughts and positive energy your way.....

Juls

02-08-2019, 10:01 AM

Thanks Donna,

Much appreciated!

Juls

Juls

02-08-2019, 10:10 AM

Hi All,

Choices are :-

1. Epirubicin

2. Eribulin

2. No Chemo.

Looks like its Eribulin as I can have Herceptin with it (If NICE Scottish Health Board allow it!) Oncologist would like decision by Monday to start Thursday.

First time I have been undecided.

Juls

donocco

02-08-2019, 11:03 AM

Jules

I hope other people put in their input but if you can get Herceptin with the Eribulin it would seem the way to go. Im sorry you are having problems with the medical board.

I tell what I know about Eribulin from memory. It inhibits microtubules like Vincristine and Taxol drugs do. I think the brand name is Halavan. I think it is given twice a week during the cycle. I forgot the dose, 1.4mg /m2 comes to mind. Not sure

The big side effects are neutropenia, hair loss and peripheral neuropathy. And the usual fatigue. constipation and diarrhea etc.

I imagine they dont want to combine Adriamycin with Herceptin because both drugs can affect the heart. Hope this helps a bit

Paul