IBC lounge: roll call, support and just a good place to hang out

Yes, nice to have you back in the Lounge SB. And glad to hear that the strep infection is being managed. We certainly do live in an amazing medical era. As you've read, we're fighting a few fires around here right now and it's good to have a few folks chime in to spread advice and cheer.

Amarantha, your gnus is certainly better! You must feel somewhat relieved and I'm so glad your onc was positive. Obviously, the idea is to get the skin of the remaining breast cleared up for the mastectomy. How many chemo treatments do you have left?

Amarantha I'm so happy to hear your good news! I hope the left side starts responding to treatment soon too.

SB ugh strep, hope you feel better soon. What a miserable time of the year to be sick (although there's never really a good time). Hope your weather has been as beautiful as mine, still in the 70s here and I'm truly enjoying it, but waiting to see what the "killer heat wave" brings later this week. I'm close to the beach so I have no a/c, if it gets too bad I shall spend all of my time in the pool hahaha! Might even have to whip up a frozen cocktail (I haven't had alcohol since my DX because I was on opioids!).

MoreShoes, are you oligometastatic? That's often a determining factor in treatment at Stage IV, as they typically still make an "attempt to cure" when oligometastic, but other factors come into play when mets are more extensive. Hope you get a treatment plan in place that you are comfortable with. Please keep us up to date, we're all pulling for you.

Waving hello to everyone else, hope you are all doing well!

Dear friends, thank you so much for your support and advice. I'd be lost without your collective knowledge and help. I've reread your messages before my appointment with the oncologist and it finally dawns on to me.

The plan of the oncologist, (and I agree with her) is: the spots in the lungs are very small, I don't have any symptoms yet, I found out about them quite by chance. So for the time being we don't do anything. I go on vacation, enjoy myself and at the end of August I have another scan. Depending on the results, I start with Xeloda. Amsterdam is doing trials with immunetherapy but I can't join yet, cause the spots are smaller than 1cm. In any case, I've an appointment with them to get more information about it.

I feel a kind of relief. There's still hope and I'll try to enjoy myself as much as I can. She asked me if I do want to continue with therapies. I told her, that two yeas ago, when the IBC came I thought that was the end. After the chemo's and DMX, I could still go to my son's graduation. Two days ago, I went to my daughter's graduation. So yes, I want to keep on trying being around as long as possible.

Great news, MoreShoes, that's a way better situation to be in. Enjoy your holiday.

You brought a HUGE smile to my face Moreshoes!! So glad the plan in place includes you being able to enjoy your summer !!!!

Moreshoes enjoy your vacation. Enjoy life.

Oh, Amarantha...I can see it, hear it, feel it, all of it, through your words. Thanks for the lovely experience. SB

amarantha, you're back to your lyrical best and I hope that the cancer keeps shrinking.

LoriCA, wow, that's a few issues. Glad that you are getting on top of them and that your holiday is still on. Too bad to miss meeting you in San Diego where I'll be for 12 days from Friday next weekat the Project Lead event.

Will post the latest version of the ribbon here.

It's really just minor stuff TravelText, given how advanced my cancer is and the bad shape I was in just a few months ago. It takes more than that to keep me down. Healing is often painful too, but it's a pain I can be grateful for because it means that the treatment is working. I really do feel fantastic besides the little aches and pains. Most importantly I'm still alive and doing better every day when they never expected I would last this long! I'm back in the gym doing some light strength training with my doctor's blessing, swimming (although I had to modify my stroke due to the rib pain, I mostly swim on my back), can easily walk for several miles on flat ground and stairs/hills are getting a little easier. Six months ago it was still hard just to get showered and dressed every day hehe. Now that I'm sleeping again, I will continue to get better and stronger every day!

I am sorry that I am going to miss your visit. I hope we don't have another triple digit heat wave while you are here. It doesn't usually get that hot along the coast but phew it was bad last week!! I hope you have a great time while you are here and that you have a chance to see some of our beautiful coastline.

Amarantha, I'm so glad that the chemo works. I love your description of your garden. Congratulations on the World Championship!!

LoriCa, you give me hope with all the swimming, walking and going to the gym.

Traveltext, lovely ribbon. I'm not sure about the shadows of the text but maybe it's my screen.

Dancingdiva, good to hear from you again. There's been so much drama freearound here that I fear I didn't get to ask you how you were going. Are you still loathe to have any more Surgical treatment? Can you see a way out of your TE boobs? If you feel like it, give us an update.

Amarantha...you just totally crack me up. "Cheer up the doctor"! I'm thrilled you're optimistic, because you're the one inhabiting your body and receiving signals from within, not Dr. Downer. My own onc radiologist was a doom/gloom kinda guy--"we're not out of the woods yet," he announced, when it looked like my treatment was going well.

May those radiation rays vaporize the cancer cells like a bug zapper kills mosquitoes. SB

Well, I made it to San Diego and have started the NBCC Project Lead course along with 42 women and one other guy, my mets pal Kirby Lewis from West Virginia. We have five more days of lectures that really concentrate on the science of our disease. Will post some more, but good luck to all those currently in treatment and best wishes to all here.

Thanks amarantha. That’s not me, I’m here to listen and learn. However, I’m asking some tricky questions of this group, since they are the ones that ten years ago set the goal of finding a cure by 2020. Most people thought this was bit ambitious.

This is me and my question that was posted on Twitter.

Q. Could NBCC focus more on treatment for Stage IV BC people rather than just prevention?

A. We believe we are on the right trajectory and have done more for metastatic people than any other breast cancer charity.

NBCC Project Lead 2018 is winding up in San Diego today. I've had six incredible days of learning with 42 people, including 8 strong mets survivors (Victoria and Chiara are shown here), 10 dynamic Black women, and one other man. We all have one goal, to advocate for those living with all stages of breast cancer.