ER8 PR0 HER2 negative breast breast cancer

[Howzit]

Hi

My mum has been diagnosed with secondary breast cancer - mestastatic carcinoma of breast to bone, liver, skull & dura. Liver biopsy shows ER8 PR0 HER2 negative breast cancer. Treatment plan is letrozole & Palbociclib.

After any advice/tips as this is all new to us & seems like a minefield of info to take in currently!

Many thanks

Emma

[MacroMom]

Hi Emma; So sorry to hear about your Mom's diagnosis. "Minefield" is a good word for how it feels at the beginning. But to start, it's good that she has a clear diagnosis and is starting on letrozole & Palbociclib. If you search this site for those words, and Ibrance, you can find lots of comments from women who have used them, mostly with a lot of success. I was diagnosed with estrogen positive HER 2 negative cancer in October 2017 with metastases to my liver and "innumerable" metastases to my spine, ribs and pelvis. I took letrozole for 14 months, no side effects and was very stable. Taking Palbociclib together with letrozole is supposed to make it effective even longer in many cases. Some women end up taking lower doses because their white blood counts get too low but you mom's oncologist should be monitoring that. Because letrozole stops estrogen and can weaken bones many of us also take a bone strengthener such as Xgeva or Zometa. If your mom's oncologist hasn't mentioned that yet you might want to ask about it.

As for tips...

First of all, take a deep breath...and keep doing it! It IS overwhelming at first, and just taking it a day at a time, sometimes an hour at a time is the way to get through it and move forward.

Ask as many questions as you (and your mom) need to feel comfortable, and if the oncologist you have isn't answering to your satisfaction try to get a second opinion. What is your mom's comfort level regarding information? Some of us want to know all our test and scan results as soon as they are available, others prefer to wait and hear it from their oncologists. Personally I want to know it all and I do a lot of research, but I have dear friends on the same roller coaster who are happy to leave treatment decisions up to their oncologists.

Ask for help...from friends, family, coworkers, neighbors. Some will be incredibly helpful, others may disappear, but I think you'll be surprised at how many angels there really are in your lives.

I was pretty sick when I was first diagnosed so during the first several weeks I was too tired to do much but sleep, eat, nap, eat, chat with friends, eat.... It was so amazing the first time I went for a walk in the neighborhood, and then started driving again! I hope your mom isn't that weak, but I'd still encourage her to rest a lot. Sleep is very healing and just the stress of it all can be exhausting. If she is still working can she take some time off? (and you too, as being a caregiver is exhausting too.)

When you have the time, look into complementary and alternative therapies like acupuncture and supplements. There are many ways to strengthen our immune systems and minimize inflammation which helps our bodies fight the cancer. Dietary changes can help too and there loads of books out about cancer and diet. Even small changes can make a big difference in keeping your mom nourished and strong....without turning her kitchen inside out!

I have made some wonderful friends in a local support group for people with metastatic cancers and find it so helpful to share stories with them. I also tried some breast cancer support groups but found that most of the participants were at earlier stages and their needs and concerns where a lot different than mine. Even though the people in my metastatic group have many different types of cancers we share a common interest in living long and well. We have cancer...cancer doesn't have us.

Finally, find something to laugh at. Right now I am watching my way through Monty Pythons Flying Circus Complete Set....14 videos! It's ridiculous and always makes me laugh. And that's good medicine I think.

Take care, and hugs from Oregon to you and your mom.

Patty

[Howzit]

Hi Patty

Thank you so much for your reply, super helpful. Lots to take in but we are finding this app a good support.

With love & support Emma x

[Mimigram]

I am so sorry to hear that about your mom. I recommend you read the book How to Starve Cancer by Jane McLellend. She also has a Facebook page that you can join and get lots of information for different supplemental treatments. Hope this will help !

Mimi