TRIPLE POSITIVE GROUP

marie12

Experts claim they identified human genes that can protect against Covid-19

• A team of scientists at the New York Genome Center, New York University and Icahn School of Medicine at Mount Sinai say they have identified the genes that can protect human cells against Covid-19.
• The goal was two-fold: to identify the genes that make human cells more resistant to SARS-CoV-2 virus; and test existing drugs on the market that may help stop the spread of the disease.

The research team also identified drugs that are currently on the market for different diseases that they claim block the entry of Covid-19 into human cells by increasing cellular cholesterol. In particular, they found three drugs currently on the market were more than 100-fold more effective in stopping viral entry in human lung cells:

Amlodipine, brand name Norvasc, by Pfizer, to treat high blood pressure and angina.
Tamoxifen, brand name Soltamox by Fortovia Therapeutics, an estrogen modulator, to treat breast cancer.
Ilomastat, brand name Galardin, it's a matrix metalloprotease inhibitor, that now being manufactured by many companies; a chemotherapy agent, with applications for skincare and anti-aging products.

https://www.cnbc.com/2020/11/20/crispr-scientists-claim-identifi...

https://www.cell.com/cell/pdf/S0092-8674(20)31394-5.pdf

Considering that tamoxifen is typically given to patients for years as a cancer therapy and prophylactic, it would be interesting to investigate if patients taking tamoxifen have a reduced risk of SARS-CoV-2 infection and/or display less severe symptoms post-infection.

Anonymous

very interesting! I’m not on Tamoxifen but I am on amplodipine for hypertension so it’s good to hear this. I am on anastrozole as anti estrogen therapy wonder if that helps at all

ElaineTherese

I'm on amlodipine as well. Who knew?

hapa

Nsbrown -I only had six cycles of Perjeta. I didn’t question my MO stopping it. I was not very HER2 positive and my post surgery pathology was HER2 negative. I still did the full year of Herceptin followed by a year of Nerlynx.

AnnaTheBrave

I will finish Herceptin and Perjeta in July and have a few questions about ongoing therapy after that. I am currently taking anastrozole with OS via Trelstar. My baseline DEXA showed osteopenia. I’ll see an endocrinologist in September to discuss that.

First question. My onco is leaving the decision to take Nerlynx up to me. She says she isn’t convinced that it buys you much, and it diminishes your quality of life. The data I’ve read seem to indicate that it does buy you something, especially for TP patients, but that data was in a cohort of people who didn’t have a pCR. I did have a pCR, but I’m still leaning towards giving Nerlynx a try. I’ve read the horror stories—is anyone able to reassure me that it isn’t unbearable for everyone? Any advice before I begin? Also, is anyone aware of any research in individuals who had a pCR?

Second question: I’m opting for Zometa to deal with the osteopenia. I have bad heartburn already so the pills sounded potentially problematic. Does that make sense? Is there a reason I should do more research about which form of treatment is better?

Thanks for your help!

hapa

Anna - Nerlynx isn't unbearable for everyone. I took it with not a lot of issues. Others suffered. This thread was pretty active back in the day. That being said, with a PCR, your risk of recurrence is already only ~5%. I'm surprised your onc kept you on Perjeta for the full year because it didn't add much value either. You can't add a whole lot of value with additional treatments when your risk is already that low. Nothing is going to get you to 0% risk.

As for your second question, osteopenia doesn't necessarily need treatment. Here is an article about osteopenia. It's not very technical. I've posted it several times before because I found it very interesting. If you have a copy of your DEXA report, you can use it to calculate your risk of fracture at this website. Note that on that calculator you need to choose your country for reasons I don't really understand. My doctor would not recommend biophosphonates for me unless my risk of hip fracture was >10% or my risk of major osteoporotic fracture was >23% (or maybe it was the other way around, I can't remember because my scores were so far from those numbers even though my T-score said I had full blown osteoporosis in my spine). I was relieved to not need any treatment for that. Good luck with your decisions!

Edit: there are hyperlinks in my response. I'm not sure if that is obvious when reading it. But here they are again:

The thread: https://community.breastcancer.org/forum/80/topics/870980?page=1

The article: https://www.npr.org/2009/12/21/121609815/how-a-bon...

The FRAX calculator: https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

AnnaTheBrave

Thanks so much!!! Very helpful!

Racheldog

Elaine there. It is nice to see your post. I am sad to see so many other HER2+ recurrences on this post. For those of us going thru treatment as fairly new BC triple positive patients it makes one wonder if we will even get a few years out of the misery of chemo, radiation and herceptin. I guess some really long term HER2 + patIents who never had recurrent BC never come back to post

ElaineTherese

Racheldog,

Yes, many old-timers don't post here any more which means they are out there, living their lives. I'm still doing ovulation suppression + hormonal therapy, so I stick around and post on some of the OS + AI threads.

My oncologist says that HER2+ breast cancer patients tend to recur during the first 2-5 years after active treatment is over. I used to visit my oncologist every three months but then I graduated to every six months and soon, I will just see her once a year.

Now is the best time to be diagnosed with HER2+ cancer because we have a number of treatments and our prognoses have vastly improved since the 1990s.

BigPeaches

I was 10 years out before my reoccurance, I'm still here but just mostly read because I don't have much to add, usually someone says what I would say before I can say it.

Racheldog

Thanks to both adds on this post. I am older (late 60's) and I pray for 10 years (I hope). Like everyone else it is hard to not think about looking over your shoulder forever and worry about every ache or pain. I am still in treatment, had Kadcyla, now currently radiation, and then 4 more herceptin infusions to follow. Has not been fun but have to do it.

Seems like this is all a crapshoot. You can do everything right and then it comes back. My first chemo infusion nurse was 16 years out as HER2+ and still doing well. I look at her as the poster child.

Cowgirl13

It was 12 years ago today that I had my lumpectomy followed by chemo, herceptin, rads and arimidex. I was 63 and now I am 75 and am fortunately in very good health. When I was first diagnosed I had no idea what I was going to do and I had always been afraid of breast cancer because my mother died of it when she was 56. When I look back I am amazed that I had a wonderful surgeon and a wonderful oncologist (who was a second opinion--so if you are not sure about your oncologist get a second opinion because we will be with them for a long time), the radiologist made me laugh and I can't believe how kind everyone was--I left so many appointments being amazed how nice everyone was. So when I look back I feel very lucky that I still can't believe how nice everyone was. Gals, you can do this!

SpecialK

cowgirl - yay!

racheldog - yes, it is a crapshoot, but the odds are on your side - particularly as an early stage Her2+ with treatment. All of the adjuvant treatments for Her2+ disease have increased the DFS by a statistically significant margin. If you Google regarding DFS percentages for early stage Her2+ patients you will see study after study that confirms this. I had a 2.6cm tumor, two positive nodes, and was treated with mastectomy plus ALND, no rads, adjuvantTCH and no other adjuvant treatment as none were yet approved, and 7.5 years of aromatase inhibitors. Still here at almost 11 years. Hang in there, it gets easier as time passes.

morrigan_2575

Seems like this is all a crapshoot. You can do everything right and then it comes back

@Racheldog - Yes, crapshoot is right. I'm only a year out of surgery (this weekend in fact) and, I just finished Kadcyla in April. I'm hoping for the best and taking everything treatment I can (even fighting for one). After that it's out of my control. Just have to live my life in the present instead of worrying about the future

coachvicky

It has been a long time since I posted. This is a long post with some background.

My husband (my Caregiver and the one who used cold caps to save my hair) was tattooed for radiation today. Friday is his first chemo with Taxol and Carboplatin.

He has Adenoid Cystic Carcinoma; a rare head and neck, non-smoking related, cancer affecting .2% (point two percent) of the population. His ACC decided to attack his left lung which was removed at Vanderbilt Medical Center in late April. His Primary Care was treating for pneumonia in December until DH started coughing blood in January.

The only way to remove the cancer was to remove the lung. Even with the lung removal, the Surgeon could not reach a small amount on his aorta arch.The look of total devastation on the Surgeon's face will remain with me forever when he said, "I could not reach it."He genuinely believed he would cure DH.It was a five-hour surgery … I mean 5 hours of actually operating.

Clear margins are usually not attainable either. Thus, both chemo and radiation are his follow-on treatment.

We have had several conversations about removal of a lung or amputation of both breasts. DH said he agreed to the surgery because he did not want to leave me. If it were just him and because he has peace with God, he would have let the ACC take its course. Dang, I got lucky with this marriage!

The strangest thing of all of this is that DH is really healthy. He NEVER attended sick call for 20 plus years in the US Army. He had one hospital overnight stay for a hydrocelectomy and that is it.

When I first heard that he had a mass identified by a contrast x-ray, who did I contact when DH was on the phone with his Primary Care? I texted my Breast Surgeon. He took control and called every Specialist he knew arranging for immediate access. He even attended DH's bronchoscopy and called me before the Thoracic Surgeon did. He gets every report and record on DH.

After texting Dr Z, I wrote the BCO Moderators. They gave me great references. I am better to walk this journey with DH because of BCO. If you have $5.00 to contribute to BCO, please do. Their care never ends.

When people at Vanderbilt asked who is Dr Z in your care? DH replied, "He saved my wife's life and I love him." Quick background is that Dr Z got clear margins when he removed my lump during my lumpectomy. It was a wire-guided surgery, and there was no "marker" in the lump. He brought in a portable x-ray machine to find the marker and there was no marker. He removed tissue outside the intact lump looking for the marker. There was no marker. The tissue he removed outside the intact lump was invasive cancer that eventually led me to a Breast MRI that found a 4cm Lobular Carcinoma in the other breast. I am alive to be DH's Caregiver because my Breast Surgeon did not quit.

I have often questioned, why breast cancer for me? What was I supposed to learn? I now know. I am the Caregiver. I know what to do because we have walked this journey before. And I can be bitchy. I encountered a MD prima-donna (not known by Dr Z) who told essentially told me that I had "no need to know" about an x-ray comment. Let's just leave it at this, he told me everything that I wanted to know, and I got no other lip from him.

So … why am I writing? I cannot find the post but someone from Australia wrote about a cream given to radiation patients that is phenomenal. I want to know if anyone knows the name of that cream. You know the whole story and why it is important.

Please, if you can find the name of this cream let me know.

Love, Vicky

1946Taco

CoachVicky,

Sorry to hear that news but know he was a fighter for you and you can be for him. Holding you close.

As for the "crap shot" - yes, but treatment gets better every year as does earlier diagnosis. The advice I got early in my journey is to make the best treatment decisions for YOU and then don't second guess yourself. TP is a long treatment regime but it usually works.

1946Taco (formerly known as Taco1946). I had password issues.

coachvicky

Thank you Taco. Thank you. Good to hear from you again.

Vicky

ElaineTherese

CoachVicky,

I'm sorry to hear about your husband but happy that you've received support from your surgeon and BCO.org. I wish I knew of the cream you were talking about! Best wishes to you both. ((Hugs))

SpecialK

coachvicky - oh my friend, I’m so sorry to hear about your DH, but I have every hope that he will make it to the other side of this ordeal with your care. I know how fiercely you support each other. Here is an older post of mine, about rads skin care that included a regimen someone used (I didn’t have rads) that includes a cream from Australia - I don’t know if this is the one you’re looking for. Scroll down the page for the post.Please keep us posted on DH’s progress. Sending you both my love and good thoughts.

https://community.breastcancer.org/forum/69/topics/810058?page=106#post_3881480

coachvicky

Thank you Special. I think this is it! I did not have radiation either and I am lost with this part.

I knew you would know.

Love, Vicky

SpecialK

coachvicky - happy to help, hope that is the one.

LaughingGull

Hi coachvicky,

Sorry to hear about your husband. I know nothing about lungs or your husband´s cancer but am optimistic, because:

• He is in good hands. You are a fantastic caregiver.
• My grandfather had one lung removed when young, yet he lived a long life and died of something else.

LaughingGull

coachvicky

Thanks Laughing ... I read what you wrote to DH ... he got a good chuckle out of it.

Vicky

Racheldog

Cowgirl, Morrigan and SpecialK---thanks for all your replies. I went into this very early stage tumor with all the gusto in the world. Then when I could only do 4 rounds of Kadcyla (pneumonitis, early and recovered) it was like being shot down and spooked about continuing anything. I am doing radiation now and then back to Herceptin. Not even finding radiation a picnic. Two more weeks of 4 week plan. Kind of backwards doing radiation first but two oncologists thought that was ok to do rads first. The Her2+ was the crappy part of the path report. Thus the chemo. I am so trying to live in the here and now. Before bed to get on CALM meditation or other similar relaxation computer finds This can be a lonely journey if you live alone but I am glad to hear that others with HER2+ are doing well without recurrance.

1946Taco

Racheldog - hang in there. TP is much more of a slog than a race but Herceptin has been a game changer. I too was shocked with the HER2+ diagnosis as it hadn't shown up on my biopsy report. I was only able to tolerate 8 sessions of Taxol but just had another NED mammogram. I was diagnosed Nov. 2016 and am very much living my life as I approach 5 years. You will too.

MsMurphy

Hi everyone. I wanted to follow up on my post about about my appointment with the cardiologist. He did notice some changes in my heart between my last two echocardiograms from the herceptin and has prescribed me 3 different meds as a precaution to keep it from getting worse.

I'm also wondering if anyone has had problems with hand pain, numbness and trigger fingers. I started out with some numbness and tingling just at night right after I finished chemo. It has progressively gotten worse. I wake up several times during the night because of my hands hurting and several trigger fingers. I'm starting to feel like my hands are turning into claws. I asked the oncologist about it and he ruled out neuropathy and suggested it might be carpal tunnel or arthritis. I've had carpal tunnel and it definitely isn't that and I'm guessing arthritis doesn't come on so quickly. I have an appointment with my PCP in a couple of weeks but am hoping someone has had a similar experience and can give me some guidance and maybe some times how to keep functioning. Starting to drop everything. Oh, I know it isn't from tamoxifen as I hadn't started it yet when it started.

Thank you and hope you are all hanging in there.

ElaineTherese

Second opinion, perhaps? How can your MO definitively rule out neuropathy? I developed peripheral neuropathy in my fingertips during Taxol. It was just numbness for me, but for some people, neuropathy can be pretty painful.

1946Taco

I had very painful neuropathy in my feet from the Taxol. I agree, arthritis isn't usually sudden onset.

YesIamaDragon

My neuropathy was at its worst about 8 months after I finished my TCHP (but was still on kadcyla)

morrigan_2575

i don't know how they can rule out neuropathy, Kadcyla and TCHP both can cause Neuropathy.

I have seen other people talk about getting neuropathy like symptoms due to low B12. Have them check your B12 during your next bloodwork to see if that's causing it