almost 14 years NED breast cancer and apparently it's back in my lungs

[Cathya]

Apparently my stage 1 ovarian cancer is ok but my breast cancer has come back. What a mess. I hadn't been followed by a bc onc as mine retired a few years ago and I had been NED for long enough for them to feel safe in letting me go. When I was diagnosed with ovarian cancer I went to his office to see him but needed another referral as he was retired. Being seen by these other onc's I let it go. They proceeded to watch for ovarian cancer but really not pay any attention to the breast cancer as they are "specialized". Finally I saw an old school onc who insisted that I was brca1 positive and referred me back to genetic's for testing (haven't heard a word from them and it takes about a year up here) and also a chest CT to be thorough. Here are the results:

There are multiple nodular densities studding the pleural
surface of the left lung and arising from the diaphragmatic surfaces . There is
involvement of the mediastinal pleural surface. One of the largest lesions is
in the left upper lung against the lateral chest wall (series 4 image #35).
This lesion measures 2.5 cm in length. There is a mediastinal pleural lesion as
well (image #78) measuring 2.5 cm in length. There is tumor studding the
surface of the major fissure. There is no significant pleural effusion.

Apparently ovarian spread is different and usually shows first in the abdomen which is clear in my previous CT done a month or so ago. I am waiting for a confirmation lung biopsy.

NED for so many years!! We are never safe I guess. I sure hope there's treatment. I'm trying to stay optimistic as I know so many here who have lived long lives as stage 4's.

Take care, Cathy

[SoCalGal]

Cathy sorry to read this. I also have lung mets for the past 10+ years. Keep us posted. Stay strong if you can. Xoxo Flori

[Carol Ann]

I am so sorry, Cathy. This disease is such a sneaky bastard. Please keep us posted ... praying you find a treatment that knocks those lung mets down!

Carol Ann

[jra40]

So very sorry Cathy. Hugs and prayers to you!

[MaineRottweilers]

Cathy, I am so sorry to read that you are back in the soup. Let's find you a treatment that will knock it back without taking you down.

[Donna H]

Sending strength and hugs!

[Becky]

Sending prayers for you.

[Pamelamary]

So sorry to hear this, Cathy. I hope you are able to start treatment quickly and that it is kind to you - but tough on those mets!
Best wishes..... Pam

[Cathya]

Ladies, thank you so much for your thoughts and prayers. Flori, I am heartened to hear you have kept your lung mets under control for so long. You give me hope. Thank you. I am curious as to what the treatment will be. Apparently if it was ovarian cancer spread there would have been surgery but that is not expected with breast cancer. Since I've had taxol twice I'm not sure they'll give it to me again. Boy I wish things were moving faster. I will say that posting here is like coming home. I am grateful for that.

Cathy

[Melissa]

Cathy,
I want you to know a friend of mine had her cancer return in her lungs after 16 years. She Was triple positive too, (now only Er positive). That's been four years ago and doing great! She still has mets in her lungs but they're smaller and she's had no progression elsewhere. There are many success stories and Many treatments available.
I'm wishing you the best!
Melissa

[Cathya]

Melissa; I'm sorry for your friends recurrence and all the stress, treatments etc. that brings but grateful for you letting me know. I have my first grandchild being born in April and have been worried that I might be a big burden for my daughter right when she is celebrating his arrival and will not be able to enjoy the birth. Your post gives me great hope. I can't thank you enough.

Cathy

[lkc Gumby]

Hi Cathy, I am sorry to hear of your recent news. However I did want to tell you that I worked a a couple of clinical trials a few years ago ironically her2 bc met protocols.
We saw excellent results with the now approved treatments.
There is real hope that those lesions will resolve.
Wishing you peace and joy with the new grandbaby.

[Pray]

Sorry to hear Cathy. I'll keep you in my prayers for a quick remission period.

[StephN]

Cathya, nice to see you again, but not for the reason!
I have heard good things about the new treatments and lung mets. You will know more after pathology. But what a stressful wait for you.

Does not sound like you had any symptoms yet, so good for the "old school" onc and his precaution.

Sending hugs and prayers for peace and better news.

[Cathya]

Hi Steph, yes it's been a long time. I do feel so much better being back on the board again. I can't believe it's a month from the CT to the biopsy. Seems forever to me. I'm so glad to hear from you and Linda that these new treatments are doing so well. I always did think the trick to this bugger cancer was just to live long enough for there to be successful treatments. I am so grateful for all of your thoughts.

Cathy

[Laurel]

Hi Cathy,

Sorry you are back because of recurrence, but glad to "see" you again. Goodness your story is sobering for all of us. From what I understand from your initial post you were not having symptoms such as shortness of breath from your lung lesions and they came as an unwelcome surprise? You say this old school onc insists you are brca1 positive, guessing b/c of the ovarian on top of breast ca. Do you really have to wait a year for the results to confirm same? Gosh, that is a long time and it has been a month since the scan and Bx. That is an such a head-messer! Waiting is awful with this disease. I am sorry you have to contend with that on top of other things. I bet you are eager to attack these newest invaders and I hope things move along swiftly going forward so you can get a treatment initiated. I wish you godspeed with it!

[Cathya]

Laurel;

The waiting is the worst! I think my problem is that oncologists here specialize and since i was a stage 1 ovarian patient they seemed to pay no attention to my former breast cancer. Delays all around. I go for my biopsy this coming Thursday then wait 10 days for results. I have phoned repeatedly and tried to speed things up with no positive results. I can't wait to start treatment knowing this cancer is not waiting for anything and is growing inside me. Thanks for your understanding. It is nice to "see" everyone again.....well, sadly not everyone.

Cathy

[Laurel]

Those wheels sure do grind slowly. Bx Thursday, well that is getting your somewhere. Still, that additional 10 day wait for the results is mighty tough! Pulling for you!

[SoCalGal]

Hey Cathy,
Sending you good thoughts and suggesting that you stay as distracted as possible, online shopping really helps :) It's so important to know what your treating, so aside from the waiting, it will be so helpful having a current biopsy in figuring out your plan. Please update when you're able. Flori

[Catherine]

Hi Cathy, this is tough! Waiting is tough! I agree with the advice for distractions as you wait for the final DX and treatment plan. New towels? New clothes? In the meantime check in often for all the good advice and great support that is still ticking away here thanks to Christine and Joe. I saw your nice post about the beginning of the site.

Sending love and support��

[Cathya]

Flori and Catherine; Haha Actually I am shopping! Plus yesterday was a big baby shower for my daughter so that was fun. Flori, I'm following all of your trials and tribulations and wishing you all the best! There's a Dr. John Bell here at the Ottawa Hospital who I started following when I was first diagnosed with bc. I'm going to check his treatments out as he is now doing clinical trials.

https://oicr.on.ca/research-portfolio/immuno-oncology/

He's the first speaker. I'll post what I learn. You just never know.

Cathy

[Mary Jo]

Hi Cathy..Just reading your post now and wanting to add my support, love and prayers as well. One never knows, do we?

[Cathya]

Thank you Mary Jo. So true. We just never know. I'm glad the biopsy is over now so next will be the results. Yikes

Cathy

[sarah]

Hi Cathy,
So sorry to hear about the lung mets. It's hard when you have new oncs to deal with at a time like this. Get second opinions or whatever. Petscan?
Hugs and love
Sarah

[Cathya]

Hi Sarah; Yes, I would so love it if my original oncologist, Vince Young, had not retired. It is very disconcerting. I have been so tempted to google lung mets but this time I am really afraid of what I will find and haven't. I'm going to wait until I have the results from the biopsy. I so appreciate your thoughts and suggestions. I hope to be stronger willed soon. lol

Cathy

[europa]

I’m so so sorry Cathy. You are in my prayers

[Lucy]

Cathy,

I've been following this thread for a while and just wanted to comment on your last entry. When I was first diagnosed with cancer I made a conscious decision to NOT search anything about my cancer. My thought process on that was that not everything I found would be accurate. And even if I could find a credible website with accurate information, it wouldn't be specific to me and I know myself well enough to know that I would be obsessed about the worst case scenario even though it probably wouldn't apply to me. Someone even directed me to this forum but I came here and read some pretty scary stuff and decided I couldn't come back until after I completed chemo. My plan was to follow my doctor's orders and her questions directly rather than get my information off the internet. That approach worked for me.

My point is, I would encourage you to NOT Google information at this time because it could cause additional stress when the information isn't really specific to you, if that all makes sense.

In any event, you're in my thoughts and prayers and I hope all goes well.

[Cathya]

Europa, thank so much. Knowing there are others out there even for a moment sharing my concerns is very comforting.

Lucy, I was very happy to see your post. It really confirmed what I have been thinking and I'm grateful for that. Even here I've been trying not to look around too much at this point for the very reason you said. This is a very stressful time for me and I don't want to add to it. Thank you so much for this.

Cathy

[Lucy]

I'm glad what I said helped. I just know what worked for me and you seemed like you were coming from a similar place. All the best to you!

[tricia keegan]

I haven't visited here for a while so just seeing your post now Cathy. I'm so sorry and wanted to send my good wishes and support and will be thinking of you.

[Cathya]

Tricia; Thank you so much for your support. I have just heard that it is breast cancer but don't have a copy of the pathology report yet. Am trying. So much has changed and advanced (i.e. targeted therapies, genetic profiling) since I was first diagnosed that I remain hopeful.....although no longer for a cure lol.

Cathy

[SoCalGal]

Cathy,
I've had lung mets for 11 years. Not sure my point but I guess I'm saying you can go another 11 years, lol. Ugh, just hate this beast!! I'm sure you're anxiously awaiting the pathology. At least you'll have the very latest and greatest tumor assay - which can be very very helpful in finding treatments. A friend just told me about this new drug: Larotrectinib aka LOXO-101 (a pan-TRK inhibitor)
I don't know my NTRK genetic status, but the early reports are promising using these targets and ignoring origin of disease (meaning it's for many cancers as long as NTRK 1,2, or 3 gene positive). So, there are many things "out there", although I would have to figure out a way to get fresh tumor sampling.
Sending hugs in the meantime!! Flori

[Mary Jo]

Dang it Cathy...I’m sorry. Fourteen years. I can hardly believe it.

Sending my love ..

Mary Jo

[Cathya]

Mary Jo Me too. I was totally shocked and plenty ticked off too. lol

Flora You really give me hope. I still haven't received the pathology reports but I'm going to ask the oncologist about three things:

1. Dr. Bell who I posted earlier about. He is right at my hospital so I hope they have lots of info about his research and trials.

2. Oncofocus. I found out that they will do genetic testing of your tumour within 2 weeks and the cost is 3500 Cdn. They sound very organized and offer lots of support to the oncologist and pathologist. I'm going to post some links in case you think this might interest you or others, including the email they sent me with lots of additional information

https://www.oncologica.com/dynamic-cmp-routing/?pg=sp6&vn=dbs&cmp=TS18&lng=en&ch=fb

https://mail.google.com/mail/u/0/?ui=2&ik=3b0b0d44ec&jsver=Fq7UL-VHC6U.en.&view=pt&search=inbox&type=162790c76bdacded&th=162bf7e2acf4ea12&siml=162bf7e2acf4ea12

They have a live link and offer lots of information. I'm impressed and wonder if I shouldn't just pay for this service. I'll ask this Friday what the oncologist thinks.

3. An Ontario based clinical trial about targeted therapies. Here is the link

https://clinicaltrials.gov/ct2/show/NCT02906943

Flori, I'm thinking of you.

Cathy

[tricia keegan]

Cathy I know what you mean about so many new treatments available since you (and I ) were diagnosed initially. I'm sure Flori's post helped to reassure you and I think it's a great thing that so many new therapies are available now. My friend has lung cancer (not bc mets) and is doing well five years on and while I know it's not the same I think it's wonderful that so many people are still here and doing well that may not have been ten years ago. Good luck and do keep up us posted when you know more.

[Cathya]

Tricia;

Interesting that we share the same triple positive diagnosis. I notice that you took an extra 2 years of Arimidex. Great!! When I was diagnosed with ovarian cancer I asked multiple times to go back on it and wasn't able to as I wasn't being followed by a bc oncologist. So frustrating. I truly believe that it would have helped. We'll see what happens now.

Cathy

[tricia keegan]

Cathy my Onc told me to stop at eight years due to recent studies, at ten years she said do another two years as there are more studies done. In all I only did ten years but with two years break so doubt that was a factor. I'm now told five years would have sufficed! Please keep us posted and I'll be wishing good news for you.

[Carol Ann]

Tricia, thanks for posting about this. I am trying to find some studies online about 5 years actually being enough. But all I am finding are ones from a few years ago still recommending 10 years.

I still have one more year to go, but yes I would love to know the risk is more or less the same for 5 vs 10 yrs.

My other concern is I had 2 ER+ tumors vs one, but all my nodes were clear so I wonder how that all factors in. I will be seeing my onc in June and I figure its not too early to get a dialogue started about all of this.

Carol Ann

[Laurel]

Carol Ann,

Here is an interesting (very for us hormone positive gals!) article. I think it is what you are looking for. It is a bit long, but read to the end. I found it a bit surprising!

http://www.gotoper.com/publications/ajho/2016/2016dec/updates-on-adjuvant-therapy-for-early-stage-hormone-receptor-positive-breast-cancer

Laurel

[Carol Ann]

Thanks, Laurel! :)

Carol Ann

[Cathya]

Carol Ann;

FYI my nodes were negative too but being that her2+ cancers love to travel, a 1 cm tumour was found by my oncologist on physical exam in my supraclavicular node. This staged me at 3c and allowed me to have chemotherapy. At that time her2+'s weren't automatically given chemo if no spread was seen to the nodes. I was lucky he found it but it also made me realize that you can never be too careful with this type of cancer. Also, my daughter tells me that hormone positive cancers tend to be the ones that recur after many years. Obviously this doesn't apply to everyone (thank god).

[Carol Ann]

Hi Cathy,

Of course you are absolutely right, and one of my big dilemmas is I had 2 tumors, both ER+, one lobular, in each breast. How does this affect things? It certainly all factors in, especially as you say the risk for ER+ coming back doesn't go away and they can and do recur after many years. As unfortunately you know all too well. :(

It all totally sucks!!!! I am so sorry again you are having to go through this.

However ... if staying on Arimidex past the 5 year point is barely going to make any appreciable difference anyway in the risk of either cancer recurring/mets, even given the fact I've had 2 tumors vs 1, etc, well then why subject my bones, etc to the other risks associated with Arimidex itself?

If it doesn't lower my risk in the end, why stay on it? The article Laurel posted a few posts back here gave some new stats about how going past the 5 year point is working/not working.

And I need the hard stats to ultimately make this decision. The real numbers.

I apologize for hijacking your thread by bringing all of this up!

Carol Ann

[Cathya]

Carol Ann;

I really appreciate these discussions as they are helping me get back into the swing (OMG) of research again. I originally had a grade 3 tumour which with the her2+, ER+PR+ would have it as a luminal B which has a slightly worse prognosis than luminal A's. I was on arimidex for six years which at that time was pushing it as it was 5 years standard. I had a hard time with herceptin and had to go off of it a few times for the heart impact. I really wanted to be on arimidex immediately after I found out about the ovarian cancer and in my heart of hearts I believe it would have had a positive effect. This is because it's a target and having an aggressive cancer (both the breast cancer and ovarian cancer were grade 3 so both aggressive) I felt I needed to be protective at that point. I guess we have to each individually look at the pathologies and decide which is best. I do have osteopenia in my back but it doesn't bother me. I'll find out what happens going forward on Friday.

Cathy

[Carol Ann]

Cathy,

I am so sorry you weren't able to get the Arimidex when you wanted it.

Praying you have a clear plan in place going forward on Friday.

Yes, each individual pathology makes so much difference.

Please know we are all rooting for you!!

Carol Ann

[Cathya]

I have had a meeting with my new oncologist. I really liked him and felt confident in him which is important. My tumour is now Her2-. I asked him why this was and he said that all tumours hold a variety of cells and the herceptin I took got rid of the her2+ cells. It is still ER/PR+. I haven't looked at the other pathology but am going to register for mychart online which will allow me to look at my entire file, including pathology, scans, comments etc. online at home. He believes there is definitely some weird mutation going on and is having both my ovarian tumour and this one genetically tested. I was so happy to hear this and it is free. I am not starting with chemo but rather a new drug called palbociclib (apparently very effective for hormone positive advanced cancers which are her2 negative) along with letrozole. This new drug palbociclib has only been available in Canada for two months and is $10,000 a month. He is arranging for it's payment so it will be free. I will not have to pay for the genetic testing or the drugs and am very happy with that. I am also seeing a geneticist at the hospital on the 27th who will be testing me so I seem to be covered all round. He thinks that given that my cancer didn't come back quickly I could respond very well to this new drug and will be on it as long as it works. He thinks eventually I will need maintenance chemo.

A couple of other things came up as well. My ca125 continues to raise and there remains fear that I might be having a recurrence of my ovarian cancer. He, along with a OBGYN oncologist will be monitoring this as he said that would require some creative treatment. Palbociclib is a pill. A side effect is that it stops the growth of your blood cells so is taken for 3 weeks every day then you take a week off so your blood can recover. Ovarian recurrences call for chemo apparently and another side effect of the drug is that it interferes with chemo causing it to not be effective. So we'll see. I do have confidence that my life is in good hands though. They are also concerned that the breast cancer might have spread to my bones and will be running a bone scan. I hope not. I am so grateful that I have had the backup of the her2support site as I have known so many women with these types of complications and am not as frightened as I might otherwise be.

As I find out more I will post here. He did tell me that I will never feel as good as I feel right now and that if I have a bucket list I should address it sooner rather than later. Even with this he was enthusiastic about my treatment and the possibility that I might extend the bell curve beyond the 5 year normal life expectancy. That was good to hear but I am starting to make holiday plans lol.

My best to you all

Cathy

[Laurel]

Cathy,

This is good news, if we may call it that, but really in light of things it is positive overall. I will pray it has not spread to your bones, so that you may begin this new oral treatment. I am triple positive, so will follow your story with interest, especially regarding this new med. Your new Onc. seems straight forward which I think helps us to see through the fear. I am glad you had a good initial interaction with him.

Your signature does not indicate that you were ever brca tested, not even when you had the ovarian ca pop up. It sounds as thought they will be looking into that now among other things. Really, they seem to be aggressively positioning you to battle this beast again. My money is on you!

[Cathya]

Laurel;

I updated my signature. Yes I was genetically tested after my ovarian diagnosis and they found a VUS (variation of unknown significance) on the BRCA1. This was basically a negative BRCA. I have been referred back to be retested and will meet with the doctor on the 27th of April. Apparently they have better testing now. I am also grateful that my ovarian and lung met tumour will both be tested genetically. We'll see what results all this offers. I am hopeful. I have told my daughter that I believe the trick to cancer is just to live. Eventually there will be something positive.

Cathy

[Laurel]

Cathy,

I agree with you and have the same mantra, just live, stay in the fight b/c new things do come along! I have all the fighters on this forum to thank for that attitude. The whole BRCA thing is still a bit of a mystery to me. Cancer has so many facets, like a many headed hydra, I amazes me that researchers discover and address as much as they do! Such smart, young people! Thank God for them!

Heading up to the great, white north this coming week to Toronto. I have not been in Canada for decades and my first time to Toronto. My son loves the city and tells me to be sure to go to a Tim Horton's (do I have that right?) for some coffee. I will be sure to say a pray for you when I do.

In your corner!

[caya]

Cathya, sounds like your onc. has a great plan for you. And it's terrific he can arrange for the new drug to be paid for.

Keep us posted and best of luck.

all the best
caya

[Carol Ann]

Cathy,

Your new onc sounds like just the doctor you need to help you deal with all of this, so glad he can get the testing etc for you! That is fantastic!

Praying things continue to be as positive as they can be for you.

Carol Ann

[Donna H]

Plan to live! Have fun! Be joyful! And eat dessert first if you want to!

[Melissa]

Cathy,
Sounds like your doctor plans to get
the best treatment for you!
I'm thinking about you and sending hugs...

[Cathya]

Laurel; What a week to go to Toronto! My son lives there too in the downtown so I was quick to call when I heard about the attack van. Horrible!!

Maya, Carol Ann, Donna and Melissa, thank you so much. Earlier I posted about the three things I wanted to ask my new oncologist about and one of them is a genetic clinical trial called OCTANE. Well it turns out he is the principal investigator for that study. So glad. I thought it was very interesting that my tumour is her2- and his explanation for it that herceptin had taken care of the her2+. I'm going to be very interested in the updated genetic analysis and will post here.

Thank you so much for your thoughts and prays. I will keep updating here anything new I learn.

my best to all,

Cathy

[Carol Ann]

Cathy,

That is even MORE good news abut your new onc!! YAY!!!

Praying for you every day!

Carol Ann

[Cathya]

Hi;

I saw the geneticist yesterday. My oncologist is getting my tumours (ovarian and lung) genetically tested and he said that will take 2 months. In the meantime the geneticist yesterday is excited as there are many more tests to be run on my DNA than the last time I saw her. Because these tests are not available yet in Ontario she is sending my DNA to the US to be tested at the governments expense (can't remember where but if I do I'll post it). It is a 17 panel test of actionable mutations. It will take 3 months she thought. I'll be curious to compare the tumours with my own DNA to see if there's any overlap...or even if there's any mutations from this group. She doesn't think the VUS on my BRCA1 will be identified.

Talk soon, take care everyone and thank you,

Cathy

[Carol Ann]

Hi Cathy,

This is great that you are able to have so many more tests done ... praying this leads to an even more individualized, harder hitting treatments for you to knock the mets out!!

Carol Ann

[SoCalGal]

I’m curious as to why so long for results? I thought it takes them a couple weeks - but 3 months seems excessive. Even if your samples have to go thru customs that’s a long time to wait for vital life saving info. Just ranting on your behalf?! Sending big hugs :-))

[Becky]

I recently got my genetics redone and it took 9 weeks for the results. I had had brca 1&2 done but they were redone along with about 20 other genes. I have a VUS on a gene called RAD 51 D. So it can take awhile

[SoCalGal]

I guess I imagined it would be fast. Good to know, I’m considering a new biopsy. Better get on it, I suck at waiting. <3

[Cathya]

Thinking of you SoCalGal. The biopsy results wouldn't take 3 months. The pathology report would only be likely 10 days. Then they send the specimen on for genetic testing. You could learn important things from both.

Take care and so appreciate everyone's comments and opinions, bless you,

Cathy

[Cathya]

You've all likely seen this information but I though it was worth posting and the author is apparently very thorough.

A CHRISTMAS / HANUKKAH / HOLIDAY GIFT BASKET FROM SABCS 2017

The Winter holidays - rather quietly - brought some extraordinary holiday Cheer and Hope in the way of powerful frontier-edge advances in the treatment of all forms of breast cancer, for ER+ disease, and for HER2+ disease, and for TNBC, and for BRCA-positive breast cancers. Below I give my choices of the best of these, with some critical - and optimistic - commentary of my own.

Breakthroughs in Endocrine Therapy
I have already written about the breakthrough results in endocrine therapy (for ER+ disease) stemming from the FDA approval of the selective CDK4/6 abemaciclib (Verzenio): exceptional survival outcomes even in later stage metastatic disease in heavily pretreated patients, outcomes higher than any other agent used in breast cancer to date; high rates of response; durable survival benefits; its combination possibilities with aromatase inhibitors and fulvestrant and PD-1/PD-L1 checkpoint inhibitors among others. Al this following the impressive efficacy of two other FDA-approved CDK4/6 inhibitors, palbociclib (Ibrance) and ribociclib (Kisqali).

SABCS 2017 now brings us further promising benefits of combining abemaciclib (Verzenio) with the checkpoint inhibitor pembrolizumab (Keytruda), where the JPCE trial found benefit in pretreated ER+ disease without adding any additional toxicity. In addition, the phase II neoMONARCH trial found neoadjuvant abemaciclib (Verzenio) plus anastrozole active in early breast cancer, dropping the rate of proliferation (Ki-67) to below 2.7%.

In addition, the MONALEESA-7 trial showed that ribociclib (Kisqali) improves PFS by 10.8 Months in ER+ pre- and peri-menopausal patients with advanced breast cancer: the median PFS was 23.8 months for women who received ribociclib (Kisqali) combined with either tamoxifen or a nonsteroidal aromatase inhibitor (AI) plus goserelin (Zoladex), compared with 13.0 months for those who received standard endocrine therapy, highly significant results for the challenging group of younger-aged breast cancer patients.

Breakthroughs in HER2 Therapy
We also saw some significant advances in HER2-positive disease. The Phase IB/II PANACEA trial found that the combination of the checkpoint inhibitor pembrolizumab (Keytruda) plus trastuzumab (Herceptin) can achieve an impressive disease control rate (24%) in trastuzumab-resistant, PD-L1–positive, HER2+ breast cancer patients, potentially adding another weapon in our arsenal of effective anti-HER2 therapies.

In addition a new formulation of trastuzumab (Herceptin), namely trastuzumab deruxtecanwhich is a highly potent antibody conjugate (like T-DM1 (Kadcyla)) was highly active in heavily pretreated patients HER2+ metastatic breast cancer patients, with a exceptional durable overall response rate (ORR) of 61.4%, extremely impressive given that this was in patients who had already moved through some of the most potent HER2-targeted therapies including trastuzumab (Herceptin) itself, and T-DM1 (Kadcyla), and pertuzumab (Perjeta), and also impressive was a disease control rate (which includes stable disease) of between 84.2% up to 100%!

With an FDA Breakthrough Therapy Designation, I expect to see regulatory approval quickly, adding an exceptional exciting and powerful new agent to anti-HER2 therapies for advanced disease.

Breakthroughs in TNBC Therapy
In the challenging TNBC arena, SABCS 2017 brought us what I consider to be four breakthrough advances.
One phase 1 study of TNBC patients who were already heavily pretreated found that monotherapy with an antibody drug conjugate (ADC) biological agent, ladiratuzumab vedotin (SGN-LIV1A), showed encouraging antitumor activity in a with heavily pretreated TNBC, with a 58.3% disease control rate (including stable disease). This brings a targeted biological agent into the TNBC therapeutic context, rather than just chemotherapies.

In addition, the ENHANCE1/KEYNOTE-150 Phase IB/II trial found the checkpoint inhibitor pembrolizumab (Keytruda) plus eribulin (Halaven) delivered impressive efficacy in patients with metastatic TNBC, with disease control rate of 36.8% in this highly challenging population.

Still another immunotherapeutic agent, sacituzumab govitecan / IMMU-132 (another antibody-drug conjugate (ADC) achieved an objective response rate (ORR) of 34% in patients with heavily pretreated metastatic TNBC, and better survival outcomes than available conventional chemotherapies in this context.

Finally, the CALGB 40502/NCCTG N063H trial found that third-generation taxane, nab-paclitaxel (Abraxane) - one of my favorite drugs for metastatic breast cancer - shows promising improvements in both overall survival (OS) and progression-free survival (PFS) compared to standard paclitaxel (Taxol) for patients with metastatic TNBC, with a 26% reduction in the risk of death.

Breakthroughs in BRCA+ Therapy,
Two advances in PARP inhibitors continue to expand our regimen stockpile against BRCA-mutated breast cancer: the Phase III EMBRACA Trial found that PARP inhibitor talazoparibimproved PFS in BRCA-positive patients, impressively reducing the risk of disease progression or death by 46% versus chemotherapy. And the MEDIOLA Trial showed that a unique combination of the PARP inhibitor olaparib (Lynparza) plus the immunotherapeutic checkpoint inhibitor durvalumab (Imfinzi) elicits a disease control rate of 80% (!) for pretreated patients with germline BRCA-mutated, HER2-negative metastatic disease. These are truly breakthrough findings in the treatment of BRCA+ metastatic disease.

HEALTH | HAPPINESS | HOPE
TO ALL!

Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology [journal]
Society for Integrative Oncology (SIO)
Member, European Association for Cancer Research (EACR)

[Pamelamary]

Thanks Cathy - a great article, summarising the latest advances. Any way you can provide a direct link? I would love to share with my Aussie groups, but am a bit of a Luddite.
Best wishes..... Pam

[Cathya]

Pam; I'm just looking and in the meantime found another article you might enjoy.

http://www.healthcareitnews.com/news/precision-medicine-clinical-decision-support-system-bests-oncologists-picking-cancer-treatment

best wishes back at you,

Cathy

[Cathya]

Pam;

I've found the article and it was posted in full by a lady on the community.breastcancer.org site so I don't have a link. I think though that I must track down this guys so I can follow all of his articles.

Sorry about this,

Cathy

[Cathya]

HAPPY HAPPY!!!

Bones scan is clear. No bone mets. I'm going to ask about going on actonel as I think that protects against getting them. See the onc on the 24th.

ASCO begins June 1st!! Here's a link to peruse the abstracts.
http://abstracts.asco.org/214S/search.php?zoom_que...

Best wishes all,

Cathy

[caya]

Wonderful news!


So happy for you!


all the best
caya

[lkc Gumby]

So happy for you ! Great news!!!

[Melissa]

Cathy,

Great and I loved seeing your "HAPPY HAPPY!!!"

[tricia keegan]

Great news!

[Carol Ann]

YAY!!! Happy Happy with you!!

Carol Ann

[Laurel]

Whoop! Whoop!!!! That is great news!

[Cathya]

Thank you so much everyone!!! I was so surprised and happy. Now I just have to wait to hear about the ovarian cancer (hope my ca125 drops over the next couple of months) and how the Ibrance and Letrozole is working....in 2 1/2 months. Yuk waiting.

Cathy

[Cathya]

OMG I just got some fabulous news!! My CA125 was 292 in early March, 359 in April and today it had DROPPED to 62. This means (so far as we know) that it was high due to the bc mets in my lung lining and secondly that the treatment I have been on for 3 weeks is working. Normally the CA125 is used to identify a recurrence of ovarian cancer (my biggest worry) but sometimes if your bc recurrence is in the lining of an organ it rises....as it appears to have done in my case. So now I have hope again as treating ovarian cancer and bc at the same time would be very difficult as the treatments counteract each other. Wow, I am so happy today. Still stage 4 but happy none the less.

God bless you all and I hope you all have some good news to celebrate. I bought ice cream. hahaha

Cathy

[Carol Ann]

YAY fabulous news!!! Ice cream AND cake, I say!! :)


Carol Ann

[Donna H]

Great news! Enjoy that ice cream!

[tricia keegan]

So happy for you Cathy and celebrating with you!

[Cathya]

Carol Ann, Donna and Tricia;

Thank you so much for joining me in celebrating this great news. My oncologist is also looking into adding biophosphonates to my regime as a deterrent to future potential bone mets and for the effects of Letrozole. Plus I got a prescription for Bactroban ointment which others having my treatments run under their noses and a little inside to protect against infections if flying, shopping malls, etc. It would be good for chemo patients too I would think as Ibrance is considered by some as an oral chemo.

I will be watching the Asco news in the next couple of weeks for news but keep my treatments in mind if you ever need them. I'm finding the side effects minimal.

God bless you,
Cathy

[Becky]

And biophosphanates seem to also have a slight chemo affect too. Very happy about all your news over the last week's. Just wasn't online to say yay

[Laurel]

Doing the happy dance for ya, Cathy! Terrific news!

[Cathya]

Becky and Laurel;

Thanks so much. Apparently a similar situation with the rising CA125 was featured on Greys Anatomy a few weeks ago. I wish I'd seen it haha. I do hate being the "weird" patient though.

Cathy

[Debster]

Hugs and prayers coming to You!

[SoCalGal]

Love this last post!!! Great news, keep it going...Want to copy you, more or less :))
<3 <3 <3

[Cathya]

Flori;

Be sure to post the results of your scan and if there's a change to your pathology. Given that mine changed I know this can happen and it opens up lots of new treatments.

Thinking of you,
Cathy

[Mary Jo]

Yay..Yay....yay. ❤️❤️❤️❤️❤️❤️❤️❤️

[Cathya]

Hi all;

I'm very happy to report that the Ibrance/Letrozole appears to be working. I understand that you have to give this time so after three months (I just finished my 3rd cycle today) I am super stoked to see these results. I'll post the results below. My abdominal CT with contrast was reported separately and NED there so don't think ovarian spread is an issue....although I haven't spoken to my oncologist yet. I see him Aug 2nd. Here we go:

COMPARISON: February 23, 2018.
LUNGS AND TRACHEOBRONCHIAL TREE: Previously 6 mm nodule anteriorly in left
upper lobe has decreased to 4 mm in diameter on image #114. No new pulmonary
nodule.
LYMPH NODES AND MEDIASTINUM: No enlarged thoracic lymph node.
PLEURA AND PERICARDIUM: Previously seen left-sided pleural nodules have either
significantly decreased or resolved. For example
Previously 25 mm anterior paramediastinal nodule has decreased to 12 mm in
diameter.
Previously 27 x 11 mm pleural nodule at upper posterior aspect has decreased to
13 x 4 mm in diameter.

---------
IMPRESSION:
Significant interval improvement, partial response.

Remember this treatment is being used for Her2+ and well as negative!!

best regards,
Cathy

[caya]

Wonderful news, Cathya!



all the best
caya

[Juls]

Great news!

Juls

[Carol Ann]

YAY!!!


Carol Ann

[SoCalGal]

Love this news!!!!!!!!

[Midwest Alice]

Cathy, Wonderful news! Congratulations, Alice

[jra40]

Great news - doing my happy dance for you :)

[Becky]

So happy for you

[tricia keegan]

So happy for you Cathy!

[Cathya]

Hi all;

Got some results from my genetic testing. I was tested for 17 genes and remain normal for all but still BRCA1 VUS. She is hoping for more information on this from the testing of my tumours....breast mets and ovarian....but I don't really understand why. I am normal for ATM, BRCA2, BRIP1, CDH1, CKEK2, EPCAM, MLS1, MSH2, MSH6, PALB2, PMS2, PTEN, RAD51C, RAD51D, STK11, and TP53. I am also negative for Lynch syndrome. Testing was done at Invitae Laboratory in the US.

Also, my oncologist said today that the Ontario Octane program which I have become part of is testing all of the mutations of my tumours and will continuously run these by all drugs. As new ones enter clinical trials they will tell my oncologist. If/when Ibrance/Letrozole stops working for me they will then decide what offers the best next treatment for me.

The oncologist told me today that they could not have hoped for better results than I am having right now....no new tumours, no indication of any issues with the ovarian cancer and existing tumours are shrinking. Plus my side effects still offer me a good QOF.

Even though I had seen the scan results which I posted here I'm feeling pretty happy tonight.

As I keep posting, apparently in December a paper will be presented about the use of Ibrance/Letrozole on hormone positive Her2+ as well as Her2- MBC.

My best to you all,

Cathy

[SoCalGal]

GREAT report. Keep it up. Much love, Flori

[Donna H]

So happy for you. You are an inspiration - such a fighter!!!

[Cathya]

Hi; I just saw that Lauren is doing very well on Ibrance and there's another Her2+ on the breastcancer.org site (Ibrance/Letrozole local) who is Her2+ and taking Ibrance/letrozole and herceptin. Just fyi for the triple positives.

Cathy

[sassy]

Happy to see good news for you Cathy!

[Cathya]

Just had another CT scan. It showed multiple small nodules and no comment on my previous tumours. I was confused and very anxious. Went to my oncologist yesterday afternoon and he went upstairs to see the radiologist and to see the scan for himself. Apparently my original tumours are so small they are barely seen and they agree these new nodules are lymph nodes in the pleura likely slightly enlarged from my cold. I am in my 7th cycle of treatment. So....I remain on Ibrance and Letrozole and get another scan in the new year. Wow. So happy. I also was talking to Lauren (who is Her2+ and Ibrance) and she is also doing very well. Keep this treatment in mind for MBC and watch out for the report on Her2+'s using it by years end.

Thinking of you all and hoping we all can enjoy the holidays this year!

Cathy

[Laurel]

Wow! More good news! This combination certainly seems to be doing the trick for you! I am so happy!!!

[Cathya]

Laurel;

I'm pretty thrilled. These results will be confirmed with another scan early January. What's great is that this offers all hormone positives a great treatment option. I'll keep you all informed as I go....and I'll be in touch with Her2+'s on treatment.

Thank you,

Cathy

[Cathya]

Had my January scan and all previously existing nodules seen on last scan have resolved completely.....yahoo. There are two new larger nodular areas but they are suggestive of inflammatory changes.....I've had a bad cold for the last month so that's not surprising. I'll have another scan to reevaluate in a few months. But, all good news to me. I see the onc in early February.

Lauren, who is her2+ is also doing very well with our Ibrance/Letrozole treatments.

Good luck to everyone. I know that January is generally a busy scan month.....not fun and full of scanexity. I'm praying for good results for you all.

Cathy

[lkc Gumby]

wonderful, wonderful news!

[Laurel]

Cathy,

That is good news! What a great way to begin 2019! Yea! Thanks for letting us know. It brings some sunshine to this cold winter!

Laurel

[Becky]

Great news Cathy

[Carol Ann]

Wonderful, YAY!


Carol Ann

[Donna H]

Great to hear!

[tricia keegan]

So glad to read this news and very happy for you Cathya.

[Cathya]

Thank you everyone for your good wishes. I do so appreciate your thoughts. Please keep in mind this treatment for any triple positives here turning stage 4. I'm hoping it will work for a very long time.....at least until a cure or immunotherapy is available....lol.

Cathy

[SoCalGal]

Just saying hello! Thinking of you...

[Cathya]

Hi Flori;

So nice to hear from you. I haven't been too active on the board recently. I'm doing well with treatment but find the se's a bugger. I'm so sick of coughing and bloody, sore noses and being tired all the time. I wonder how much of that frustration is the weather lol. Ah well the alternative is much worse lol. It's so cold and icy here. We're expecting 30 some cm of snow (around 15 plus inches) this afternoon and more tomorrow. I'd like to go out and do some shopping this morning but there's ice everywhere....the roads are good but the walkways and driveways are treacherous. So rather then risk a fall I'll just stay in. I'm Canadian so used to this time of winter but it is a bugger. I lived in Winnipeg for 20 years so I really shouldn't complain about the weather here in Ontario.

I hope your mood improves following treatment. I would find it very difficult to deal with your clinic I know and I can only hope you're feeling so much better and optimistic about the treatments themselves that your frustration passes quickly. Have you been dancing lately?

Thinking of you,

Cathy