I've not been active really the last few months but I have been reading from time to time your posts. Just been very up and down since being diagnosed with brain metastases a year after secondary diagnosis.
Since my brain mets in march I've been on kadcyla infusions every 3 weeks and continued on letrozole tablets and zometa every 3 months for bone mets.
In March my TMs were over 1000 and now they are 108, the lowest they have been since March last year, really thankful for that!
Whilst on kadcyla I have had brain MRIs to keep a close eye on whether the treatment is keeping the disease stable there as it can be known to cross the BBB. Most recent MRI less than 2 weeks ago has shown some progression but also minimal fluid build up as pressure from some of the lesions press on a ventricle at the back preventing fluid from draining so I have started dexamethasone 4mg daily and today I had my mask moulding/fitting and planning scan for radiotherapy starting this week.
Always knew radiotherapy was on the cards since march and I think I've rode my luck on not having it before now, I'm asymptomatic still, had a few pressure headaches over last weekend but the steroids seem to have relieved that.
Feeling optimistic, perhaps naively but 'it is what it is '(and for someone who doesn't know what 'it' is, I say this far too often).
Congratulations on those markers!! Mine have been going up every blood test and are beyond 2,000 right now. Onc doesn't have a clue why, although agrees something's going on. I have blood tests every three weeks and a pet scan every 12 weeks. Showing some progression, but not that much. Looking into radiology this week. If my markers went down like yours did, I would be dancing a jig.
Dear CazlavI wish you so much luck, it sounds like you have been keeping on top of those mets, and your doctors have a real handle on your disease progression. You have to go into the next treatment with hope, the radiotherapy could do wonders for you.
Everything about the brain is so scary, I have mets all over my neck and skull and I could feel them growing, like a helmet, but so far not in the brain (it is really early days for me).
Thank you. Yes the brain involved does feel scarier but I'm willing to do whatever my team think I need to keep on top of this. Can't fault my care team, on the ball with everything x
You sound at peace with “it”. With those markers you have every right to be optimistic. It’s good you are mostly asymptomatic and that you seem to be getting excellent care. I hope your radiotherapy goes well this week and your optimism helps you through the treatment. Sending healing thoughts your way.
Dear cazlav------God bless and good luck! How scary our lives are! I am impressed by your matter of fact approach. A very dear friend who began with cancer in his ear cavity a few months ago, had brain surgery at MSK in NYC, last Thursday and has left a message on my phone yesterday (Monday) that he is at home and feeling okay. It is hard to fathom all the twists, turns and bad surprises this MBC brings to us. It is also absolutely amazing to me how, through these adversities, we become stronger, wiser and more appreciative of our precious lives. I do mean "precious"!
Hi Cazlav, Wishing you the best with your radiation therapy. You sound like you’re in a good mental place though I imagine it was hard to get there. Stay strong and know that you have others rooting for you.
Ps I've been on kadcyla for about 15 months. Its controlling disease in my body but I also got mets in my brain.
Hi,Yes I brought this up ages ago and again last week following recent results. I have innumerable lesions throughout the brain, I have seen the scan image, sadly I had to admit when faced with it that gamma would not be suitable.
I have done lots of research believe me. Thank you though.
Dear Cazlav, Glad to hear your treatment is going well and knocking your TM down. Your attitude is so inspiring. Wishing you the best and sending hugs .
Wishing you success with your radiotherapy! Please consider speaking with your radiologist about the following (as excerpted from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf.) For detailed information about treatments, contending with side effects, and more, please visit insidersguidembc.com
For patients with multiple (widespread) brain metastases, or patients who have a rapid recurrence (i.e. within a few months) of brain metastases treated with SRS, Hippocampal Avoidance (HA) WBRT with Memantine HCL is recommended, although using SRS alone for patients with up to 10 brain metastases may also be a viable option.
HA (or Hippocampus-sparing) WBRT is a special form of WBRT that spares the hippocampus (a small region of the brain that is primarily associated with memory and spatial navigation) from being targeted by radiation. HA WBRT is accomplished by using Intensity-Modulated Radiation Therapy (IMRT), which is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. Memantine HCL is an Alzheimer’s drug that can help prevent cognitive decline.
I've only had stereotactic radiation for two very small brain mets and found it very doable. A woman I met several years ago developed brain mets and was able to go skiing within just a few days of whole brain rads, down hill skiing and not the beginners trails! She lived for several years after that, and continued to be very active and risk taking with alot of skiing and zip lineing. She was amazing! As an aside, my rad onc showed me photos of a bunch of face masks his patients decorated after their brain rads were finished! I'm trying to figure out how to decorate mine--my artistic talent is almost nil. LOL
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Update about an update on Oncologist meeting 
Radiotherapy 
Hi everyone!
