Lepro mets

GirlWarrior, Seeing your post made my day!  So glad to hear you are hanging in there. Love and hugs to you and your young one.

Hello Mary Anne, Jobur and rose and girl warrior... And joining the club.

I have WBR starting tomorrow for 5 sessions... Then re-evaluate. My MO has not contacted me but I understand they might take me off the pertuzamab / tratuzumab... But I'll find that out next week. I'm only going on 2mgs of dex ( steroid) for eight days then off. I believe they are only using the dex as a precautionary measure

Mara, I have been off taxol since I stabilized after 8 rounds.. That was in Feb 2015.. So the government does allow the continuation of this first line of defense without the taxol.

I'm wondering who is out there? I have been reading about you and have you in my thoughts and prayers.

JoJo

Thank you for checking in Mary Anne... I will hope one of them checks in too. Hugs!

JoJo

Thank you, Mara,

I had 5 WBR treatments and will meet with my Medical Oncologist in a few hours.

I had another MRI done, to capture my spine and I'll find out if I have any issues of spread down there today...still symptom free but worried bc symptom free got me here too.

I have a list of questions regarding TDMI, Intra-Thecal, immunotherapy, BBB disruption, and just today was listing about POG.- personalized onco genoming... Basically breaking down the DnA of the cancer and going beyond chemos and finding the odd variations in DnA that might benefit from another medicine altogether.

Will be a CBC special on it tomorrow night (Thursday)... I think called Cracking Cancer.

Doing okay from my WBR, thank you... I'm shakes from the steroids and maybe not sleeping as much, but still getting out to get my dog out and a good walk in. Keeping my steps to 9000-10000 with dog and appointment hiking.

Thanks for being here, I'll check in later this week again.

Big hugs and hope,

Jojo

Hello Jojo and other lepto ladies. I have been out of commission for a few weeks with a bad reaction to pamidronate followed by what is likely progression 😡. So we have rescanned my head and have scanned by spine and will find out soon enough what is going on. I think it is in my spine because it feels a bit different than last time and my post treatment MRI showed complete resolution in my head. Jojo, glad to hear you are doing so well after the WBR - I was quite wiped out. Sounds like you are the warrior here 😁

Girlwarrior, I am thrilled to see your post this morning! You have been on my mind so often, but I have become much more of a lurker here and not posting much. Sorry you have been laid low by recent tx, but wonderful to hear "complete resolution" in your head. Hope your MRI's show a big fat nothing going on in spine too. Love and hugs to you and your daughter.

Hi JoJo, Sounds like you are doing amazingly well under the circumstances. For the record, I don't have lepto mets either, but I am a JoJo too!  That's great that you have no symptoms from BC, hope it stays that way and tx beats the crap out of those mets. Hugs and hope back at you.

Mara and Mary Anne, How are you two doing?

Ho Jobur, thanks for asking. My recent scans show NED from the neck down. My brain met is gone too. I currently get Herceptin and Perjeta every 3 weeks. I have recovered from my WBR. No issues now. Lucky for that.

I don't have lepto mets and I am not a Jojo, but have been looking out here for updates from steelrose. I know she'd be looking for me if I'd gone missing. Rose, I hope you are having success with treatment if you read this.

JojoTO, that is awesome stepping. And Mara, I'll take the chance to congratulate you again on NED and vanquishing the brain met. Woohooo. Girlwarrior, I hope the spine is clear, too. 

It is so nice to have all this support from you non-lepto ladies. I think this board would be a very quiet place otherwise. I have learned so much from all of you. And today my naturopath called me to tell me my spinal MRI has not been read yet, but the head MRI was NED 🎉🎉🎉 !!

Yes GW, what mara said! Happy dancing for your NED head and will kick it in to high gear when we hear the same for spine MRI.

Mara, yeah for few se's on H&P and good QOL! I'm sure you can live with that runny nose.

JoJo, Hope you are still feeling pretty well and keeping up with that amazing number of steps! Hope the shakes aren't bothering you too much. Sounds like you are very on top of your tx with that list of questions. Advocating for ourselves is so important.

so so happy for you girl warrior! I am thrilled with that good news!

Mary Anne

Thank you Mara for sending me to this site. Very helpful for such a complicated issue.

To the others, I've had mbc dx since 2013 and was bone only until the past few months. Symptoms appeared in November and MRI finally found LM in March. I just finished 10 rads to the right temple over the eyeball. Just trying to figure out what is really happening. I had just started on Xeloda right before this dx. Follow up MRI at the end of April.

Learning from you all!

Thank you.

Kaption, I saw your post from bac in April, just wanted to say that an opthalmologist with good equipment can do more that on optometrist. I had a choroid tumor, a met behind the eye, and an opth. follows me now. He stays in touch with my onc., which is helpful.

Best to you, Mame