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Old 06-19-2018, 04:26 PM   #21
Juls
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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.
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Old 06-19-2018, 05:33 PM   #22
donocco
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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
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Old 06-20-2018, 04:05 AM   #23
Juls
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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
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Old 07-02-2018, 07:32 AM   #24
Juls
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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
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Old 07-02-2018, 10:05 AM   #25
donocco
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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
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Old 07-03-2018, 06:54 AM   #26
valleygirl
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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
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Old 07-03-2018, 08:50 AM   #27
Cathya
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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
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18



Last edited by Cathya; 07-03-2018 at 10:26 AM..
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Old 07-03-2018, 02:25 PM   #28
Juls
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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
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Old 07-03-2018, 05:09 PM   #29
donocco
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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.
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Old 07-04-2018, 02:59 PM   #30
Juls
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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
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Old 07-13-2018, 06:46 AM   #31
Juls
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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
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Old 07-13-2018, 06:48 AM   #32
Juls
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Re: Treatment after Kadcyla?

Hi Cathy

Have you had your report yet?

Still waiting on mine.

Juls
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Old 07-13-2018, 10:57 AM   #33
Laurel
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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.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 07-13-2018, 02:06 PM   #34
Cathya
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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
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 07-13-2018, 02:27 PM   #35
donocco
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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
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Old 07-13-2018, 03:39 PM   #36
Juls
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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
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Old 07-13-2018, 04:06 PM   #37
Juls
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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
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Old 07-14-2018, 11:43 AM   #38
donocco
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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
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Old 07-14-2018, 12:17 PM   #39
donocco
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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.
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Old 07-16-2018, 03:10 AM   #40
Juls
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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
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