Whole Brain Radiotherapy

Hi ( or should that be BOO! given the season)

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).

Thanks for reading my long post.

Best wishes to you all xx

[SoCalLady]

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.

[Hidden in reply to SoCalLady]

Thank you. Wishing you my best for your radiology appointment x

[Ursula_I]

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).

Hang on in there, we are all rooting for you.

Lucy xxx

[Hidden in reply to Ursula_I]

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

[stardust1965]

Caroline,

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.

Vicki

[Hidden in reply to stardust1965]

Appreciate that Vicki. I'm feeling peaceful (ish) about it all presently, let's see how I feel in a week! X

[Beryl71]

Well that's a dramatic change in markers and well done. I hope your treatment is successful for your brain Mets. Thinking of you. Carolyn x

[Hidden in reply to Beryl71]

Thank you very much. Yes the markers reduced dramatically within the first 3 months of kadcyla and are now just steady x

[jersey-jazz]

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"!

[Hidden in reply to jersey-jazz]

Oh wow that's great to hear your friend is doing ok so early on, hope that continues. Thank you for your blessings x

[Timtam56]

Hi cazlav. I don't have brain Mets...yet.

But I am under no illusions/delusions? that it may not happen to me, because I have so many skull Mets.

So it's always good to know that as scary as the future can be, those who are there are still feeling okay and being as positive as you.

Thank you for your post and your insights.

Keep writing here.

Chris.

Melbourne

[Hidden in reply to Timtam56]

Thank you x

[Kaydub]

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.

[Hidden in reply to Kaydub]

Hi, thank you. Yes I've got myself into a place of auto pilot, just got to get through this as some things have to be gotten through.x

[jersey-jazz in reply to Hidden]

I love your attitude and try to be like that. I do not always succeed. Good luck!

[mariootsi]

Wish you well in your treatment! You are a warrior!

[Hidden]

Good luck with the radiotherapy. Hoping it sorts those mets out. Keep us postedClare

[Hidden in reply to Hidden]

Thank you. I will post updates when I can x

[Andersl]

Has anyone talked to you about Gamma treatment? PLEASE ASK NOW!

it spares healthy tissue and targets the cancer. I had it in September for 4 tiny brain mets.

GOOGLE gamma knife surgery

[PJBinMI in reply to Andersl]

Stereotactic radiation is the generic term for focused radiation like gamma knife, cyberknife, whatever brand.

[Andersl in reply to PJBinMI]

Gamma is specifically for the brain. An organ that does not move.

[Andersl]

Ps I've been on kadcyla for about 15 months. Its controlling disease in my body but I also got mets in my brain.

[Hidden]

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.

[Andersl in reply to Hidden]

Yes there are restrictions with Gamma in terms of sizes of the lesions/lesions combined. I'm sorry to hear you're not eligible for Gamma.

All the best and please let me know how you get on

Louise xx

[Nature613]

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 .

[Bestbird]

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.

[Missmaddie615]

Great news about the tumor markers decreasing! I’ve heard good things about radiotherapy -wishing you much success with it! Blessings to you 🙏

[PJBinMI]

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