Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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.

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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/symptom...s-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!

Re: Treatment after Kadcyla?
 

Praying for you, Juls!

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

Hi Paul,

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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

Re: Treatment after Kadcyla?
 

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.