TRIPLE POSITIVE GROUP

vijiya - hoping your scans show nothing of concern, I know it is nerve wracking, I had a pre-chemo PET and one post-chemo, but had surgery first. Is your neck swelling on the same side as your port, if you have one? Could be a culprit. I believe that nuclear bone scans and MRI are used more frequently when looking for bone mets, and PET/CT used more often for soft tissue mets like liver/lung/other. PET/CT relies on absorption of the glucose/nuclear tracer and I am not sure how much bone lesions take that up in the short time between injection and actual imaging (less than an hour), so may not be as effective an imaging modality for those areas. Because PET/CT is an overlay imaging it may though. You are right about Herceptin and chemotherapeutic agents not crossing the blood brain barrier, and this is because the molecules are too large. The good news is that several newer drugs have a smaller molecule that can penetrate and have a positive effect on Her2+ brain mets, Tykerb and Nerlynx. Hoping all you are dealing with is side effect and nothing beyond that to worry about. I have a good friend who is BRCA1+ and had triple negative breast cancer and was treated at my same center, but by a different physician. Her doc uses 15-3, but mine uses CEA and CA27/29. I believe these markers are somewhat interchangeable but look at different antigens in the blood. Elevated values can be a sign of problems, but can also be a sign of inflammation - lets hope for that, right?

morrigan - If you are interested in tracking your blood test results they should be able to print them for you after each result - usually the CBC is an instant result since they need to know your blood counts before they ok your infusion, or they can also make them available on a patient portal if your center/hospital uses one. My portal has the additional capability of reading the labs as a graph over time, which was helpful in seeing trending.

Morrigon, mine either. My MO rarely does bloodwork.

Hi guys,

I’m back from a hospital visit today where we had huge conversation with docs about my mums BC.

They had refused to operate immediately because it appears she has a swollen breast due to blocked lymph node. He said they can’t cut into that until the swelling goes down and so letrozole is the first treatment to reduce this swelling.

Has anyone here experienced this?

Mum is then to have a heart valve replacement and then they’ll review the chemo option. If still no chemo then they will operate as long as that swelling is gone.

If the Letrozole does not reduce the swelling then they’ll go directly to Rads.

Mum is much happier just knowing there is an actual plan.

Hello everyone, I just started zoladex,letrozole, and kadcyla. Not feeling too great. Having a really hard time sleeping and increase in anxiety, probably due to changes in hormones and constant hot flashes at night.Any suggestions on managing side effects? Pharmacist suggested gabapentin. Does it work? Worth taking some more meds? Thanks so much!

jkeet - gabapentin is a medication for nerve pain, not sure why the pharmacist recommended it for the side effects you are currently experiencing. In all the time I have been here I have only seen it prescribed for neuropathic pain, and untenable nerve pain from surgery. It also has a scary list of side effects that would be enough to keep me from taking it. I would suggest a sleep aid, or I have also seen some use Ativan or Xanax - but it is important to note that these are potentially habit forming. Effexor is also frequently prescribed, but coming off of it requires careful management. If in your shoes, I would try some holistic methods first - melatonin, finding the right combo of sleep clothes, sheets/blankets, room temp, ambient light in the room. For anxiety it is harder to find non-drug means, but talk therapy, management of caffeine intake,mediation or yoga are places you can start. I have always had wicked hot flashes due to sudden surgical menopause. I still have them and that hyst/oooh was almost 20 years ago - but, I found that an anti-inflammatory diet helped tremendously.

Good to see the tests came back negative for cancer. 😁

Do they know what is going on with your thyroid? I know Chemo can cause hypothyroidism (which I actually had prior to starting Chemo) but, wasn't sure if it was something else.

Hope all goes well with you remaining doses, maybe Chemo is messing up your marker?

thanks for the well wishes

Morrigan, I am not sure if it's the chemo that triggered the thyroid..I guess we will never know. Its 1.7cm in size. Actually its bigger than the lump I had removed in my breast. Will have to wait after chemo and radiation to remove it.

Still have no idea what's messing up the tumor markers..read that fasting might help. Going to try that next

Vijiya

Vijiya - about 19 years ago I had a tumor on my thyroid. They found it when I found out I was pregnant with my daughter. It was the size of a quarter. I couldn’t do any radioactive dye test since I was pregnant so I was told to come back after my baby was born. we moved four weeks after she was born and I didn’t think anything more about it until she was 6 months old. By that time I couldn’t lay on one side and breathe every well. Went to see an endocrinologist and end up having a benign tumor the size of a baseball! They took the tumor out and most of that side of my thyroid. I never had to be on medication. I’m hoping yours is an easy extraction!

i think a biopsy or MRI would be next.

I'm impressed you got a mammo. Places around here closed down in March quite a few of my friends had their routine Mammos canceled.

I hope this turns out to be nothing to worry about.

I was wondering if someone could help with a question. I am scheduled for Chemo with Herceptin starting tomorrow. I just received a call from a nurse confirming my appointment starting tomorrow. According to someone else's post about a generic Herceptin, I asked if I was receiving true Herceptin or a biosimilar drug and I was told that I would be receiving Kanjinti instead of Herceptin. This was approved in June of 2019. The nurse told me that my insurance probably would not cover Herceptin. Does anyone know what this is and how effective it is? Should I do the treatment if I am not receiving Herceptin? Thanks for your help.

Paula

PJAL — here is a link to four experts presenting on Biosimilars.

https://www.examinebiosimilars.com/?c=bsm-16cfd42a680&gclid=EAIaIQobChMIoObHv6b06AIVgojICh3hjACEEAAYAiAAEgLUsvD_BwE&gclsrc=aw.ds

I’m not a scientist or a doctor, I shared my personal experience of how badly I reacted to Kanjinti and not being informed I was being given a biosimilar. Please ask your medical professionals. Best wishes.

🌈

j

Cowgirl13, I called my insurance company and they do cover Herceptin. I sent an email to my MO, but she hasn’t responded. The oncology nurse has not responded either. I have a tutorial with her tomorrow morning and then I begin treatment. After all of the research I’ve done on Herceptin, I wasn’t expecting this. I think this whole biosimilar drug thing is fairly new to reduce the cost of the original drug and I’m uncomfortable receiving something that’s similar, but not exact.

thanks Angie for sharing your experience...I am hoping to get this removed in 2 months time

Vijiya

So, the deal on Kanjinti and Herceptin is this - Kanjinti is not a generic version of Herceptin, rather it is a similar drug that is not made by the same process, and so is less expensive to produce. Genentech is the maker of Herceptin, and Kanjinti is made by Amgen. Since Herceptin was a gold mine for Genentech, other drug companies wanted a piece of that market and so they worked to develop biosimilars that they then had to prove to the FDA could provide the same effect that Herceptin does. Much like with generics, insurance companies like less expensive drugs, so some oncology practices are starting with biosimilars. I think for those who exhibit intolerance for Kanjinti a request from their oncologist for Herceptin will be honored, particularly since using biosimilars is relatively new. This happens with aromatase inhibitors as well, there are some who can't tolerate the generic formulations because of the additives and fillers that are different to each generic version, and when your oncologist writes your prescription for the brand name and no other, insurance will cover. This also happens with allergic reactions to taxanes and then insurance is asked if they will cover Abraxane, a more expensive taxane that does not use a solvent and so is better tolerated by some patients. Important to note that a number of the same side effects can occur with Herceptin and the biosimilars, but because they are formulated slightly differently, there may be some side effects that are unique to each drug. It is a very good idea for new patients to confirm which drugs they will be getting since there are now a variety of options, and important to note there are a number of biosimilars for Herceptin, Kanjinti is not the only one. I know there is a lot to take it right at the beginning, but it is your oncologist's responsibility to provide this information up front, and your right to know.

vijiya - glad to hear your marker is dropping. Hang in there!