if had or brain mets please share your knowledge

[Pam P]

new to this week. brain mets mri on Thursday showed 6 -8 spots they could see. I only know size and location of largest 2.6 cm in cerebellum. One is located in a spot that potentially cause blocking fluid to brain. They said risk was slight but if it started to get sever headache and dizzy i should go do ER & might need neuosugery.
uI've had 2 out of 20 sceduled = I asked about gamma knife and told not for me=it would only focus on 1 met and others wouldn't get treated.

questions it have:

What are my best outcomes here given the number of mets? wbr doesn't work -end of road. shrink some/all then what ? all disappear - yeah = they what?

On rhia site I've read about several tx - wbr, gamma knife, cyber knife, IMRT .steroactic sp something..VMAT, maybe others==== could some one explain them to me oe lead me to a helpful link - i really appreciate it.

Will i see any relief in smyptoms during rads or does i take a couple months to know. I've heard no follow up scan is done right after wbr because its too soon to see changes. How long do you have to wait?

Already the decadron had relieved some headache and dizzy feeling. Do people drive themselves? Go to work? Not comfortable driving yet but hope to try someday next week

I see tje rad doc again Tues. what questions should I be asking him:?

Im totally out of my knowledge zone in this whole area.

thank so much. pam

[donalddonald]

hi, my wife also had brain met two years ago, also gamma knife is not suitable, she had focus radiation and wbr instead, together with tykerb, after that, one and half year of tykerb with vinorelbine (injection then oral), stable for 2 years then new brain met again last October, then herceptin and tykerb also place rod in the leg bone, now is planning radiation again, may be we can share more information together?

[krisvell]

Pam
I am new to BM too. I found this web site helpful: http://www.brainmetsbc.org/
Karla (Kavvy) shared it with me.
Hugs and prayers,
Kris.....

[Jackie07]

Here's a site that explains different types of radiosurgery in detail:

http://www.irsa.org/index.html

[Barbara H.]

HI Pam,
I had one 3cm tumor 7 years ago this coming May. You can read my prior posts. You have to believe that treatment will work because it has for others here. The only small positive result of this sad development is that it could be the reason for your excessive fatigue, and hopefully that will resolve with treatment. I hated decadron. It made me sleepless, manic, and caused huge weight gain. It caused me me to say crazy things. My muscles atrophied especially in my legs resulting in them being very weak. Although you don't like hearing this information, I wish I had at least known about these side effects the first time I took it. I had to have two subsequent brain surgeries due to radiation necroses. I was quite adamant about requesting to wean a quickly as possible from the decradon after those surgeries.

I know it is very difficult with all you have been through, but try to keep as much hope as you can. As you know, there are others here who have done OK with this, and new drugs are on the way to help you. Just look at Sheila.

Pam, I care for you and you continue to be an inspiration to me and to others. I applaud you for your willingness to share so much of you journey these past few months in spite of its difficulties.

Best wishes,
Barbara H.

[Pam P]

THANK you all for your info.

guestion: if seems all of you who have done well have had 1 met and could get gamma or other targeted tx.

Since I have multiple spots and only wbr seems to be option for now -- does that mean my prognosis is worse?

[Jackie07]

Pam,

If you read the story of the lady on the www.brainmetsbc.org (http://www.brainmetsbc.org) site, you'll find that brain mets weren't the cause of the end of her 15 years of triumphing over metastatic breast cancer.

The only concern I have is the one on the cerebellum which controls several vital functions such as temperature and breathing. I've read several successful stories about treating tumors in that area. Be sure to ask your team questions.

No, I don't think driving is a good idea as the cerbellum also controls balance.

I think part of the idea of whole brain radiation is to 'pre-empt' possible met cells that are not large enough to be showing on the scan yet. Your doctor can also treat individual tumor with some forms of surgical procedure - either craniotomy or radiosurgery in addition to whole brain radiation.

[StephN]

Dear Pam -
I know how hard it is to focus energy, when you are low anyway, on a new and important area of concern. Especially the brain, as there is a lot to know if you want to be interactive with your treatment and team of docs.

Especially now that there is so much research and advancement in treatment of various kinds of mets.

If you have been following CourtneyL's story here, she has avoided WBR even with numerous small mets.

In your case, you have enough systemic disease that they want to knock out any little "seedling" cells in your brain with the WBR, as well as what they can see. This may or may not "do in" the larger one.

Our brain has 4 ventricles, which move the cerebral spinal fluid through our brain area. My cerebellar met was large enough to cause inflammation that was encroaching on the nearest ventricle. The area of inflammation was very visible on my MRI. The decadron speeds up the shrinkage of that inflammed area. (Guess that is why we feel generally sped up as well.)

I did not yet have any symptoms and only two lesions, so they did not feel seizure was an issue and did not restrict my driving. It is the assessment of seizure risk that mainly determines whether they ask you not to drive.

You will notice that every time you see your rad onc someone asks you to do various things so they can check your reflexes, reactions, etc - called "neuro checks." If you do well with these, it is a good sign.

[kiwigirl]

Hi Pam mine are in the same location and i have had all your symptoms to. It would seem that this is the area Her2 goes to.

As i have now had 6 treatments i am on the improve my worst was the first four and i was unsteady. I've had my license revoked until doc says i can drive which should be in a few weeks.

I had 10 small tumors in four clusters which they are treating with a lower does WBR and at the same time high dose directly on the Tumors which is called VMAT - 3d radiation that targets the sight and not the rest of the brain. My WBR is to get rid of seeds and it is at 35 fractions and the direct vmat is %100 to destroy the little buggers.

I'm on a reduce dose of decadron and the other ladies have given you good info on that.

I don't do stat's as we are not one but i do believe that your mind does help every time i get zap i imagine they are dead. i have moments when i clean and clear my brian and think i have no disease and will not have any disease.

I don't know if you have tried T-DM1 but i believe that the DM1 crosses the blood brain barrier. At present i am not able to go on this as I only have disease in my brain not any were else. Once you have done your treatment you my be abe to start this.

It has taken me a long time to adjust to and it does require a lot of rest (boring) it is only for a short time.


The other thing is I will have another MRI at the end if my treatment to see how it went not before. The first week of treatment you do get worse before you feel better.

If i think of more i'll let you know. Jac

[Pam P]

Thanks again for all your help and advice.

Kiwigirl - you asy after 6 tx you already feel better - encouraging.
I'm going to ask the dos on Tues if I could do the vmat targeted rad on the large met in cerebellum along with the wbr. Is th wmat the same procedure = juat an additional laser shor?

[Jackie07]

A film demonstration of VMAT:

http://www.elekta.com/healthcare_international_elekta_vmat.php

[kiwigirl]

Hi Pam
Thanks for posting Jackie on VMAT. It takes its shape from the MRI and has a lot of planning. But targets the shape of the tumor.

This is different shots but done at the same time as WBR and I'm sure that this is what Brenda had done also.

It takes a little longer but i think well worth it.

[ElaineM]

You might be interested in checking out some of these resources.
http://her2support.org/metastasis/brain-cns
Take good care of yourself Pam !!

[VirginiaGirl]

Hi Pam & everybody,
I was dx with brain mets end of Jan, immediately started wbr, and just now am getting around to writing everyone. First, thank you for all the supportive responses I received, and my apologies for not writing sooner. Besides tx, I have had tons of visits from family and friends, trying to deal with everyone's feelings about the brain mets and get some things in order. It's been incredibly busy.

I found wbr to be harder than I thought, and worse in some respects than chemo. Initially they thought I had 11 spots, but a follow-up mri 2 wks after finishing rads actually was written more clearly and showed I had more like 16 spots. The wbr results are some shrinkage in all spots, and significantly reduced swelling around the largest tumor, which was about 2 cm and went down a little bit - this was the one was causing some symptoms like tension-type headaches and serious risk of seizure. The rest of the spots are less than a cm. I guess now I'm "stable." I started tykerb/herceptin 2 weeks ago, we're going to give that a chance to work on my systemic issues and hope it continues to shrink the brain mets. We are looking into whether I can get targeted rads to the largest tumors later on. I am not in a hurry to do any more rads to my brain.

Onc had immediately started me on 12 mg decadron to get swelling down, and that was very hard to manage. I am not a big person to start with and tend to get over-medicated anyway and hate steroids. i was ravenous, swelled up fast, still having some insomnia, it was awful. Steroids also mess with your blood sugar, and I am having issues with that as well. I have been down to 4 mg a day for the past 2 weeks, which is manageable, but I was hoping to be off it all together by now.

By the second week of rads I had serious short-term memory issues, moments of almost panic when I couldn't remember things, started having to write everything down. The docs said any cognitive dysfunction/memory issues I was experiencing at the time would not get better and that freaked me out! I was supposed to get 14 txs, but realized toward the end I was getting more than the standard dose (3500 units vs 3000) and the only reason I got for this (from a nurse) was that the doc probably thought since i'm younger (45) I could handle more rads. I disagree (I think being younger and with a 13-year-old daughter I need all the brain cells I can keep!) and skipped the last one. But I have found the memory issues have improved and it's not nearly as bad as it was when I was in the middle and end of treatment, it's been a month since rads ended. I was also light-headed a lot, found I'd get dizzy pretty easily if I was turning around a lot, like trying to grocery shop or cook dinner. I was able to do stuff like that, things around the house, etc. but some days it was exhausting, too. This is the first time since my initial surgeries 6 years ago that i have been unable to work at all during treatment, and frankly don't know how I could work with the memory issues anyway. I am looking now at going on disability so I can stay home and take care of my family.

Anyway, complicating all of this is that a couple viruses swept through my house the first week I was doing rads, and while I thought I'd escaped the worst of it, I have now been on two different antibiotics, first for bronchitis, now finishing up on one for some pneumonia in my left lung they found by ct scan last week. These have had their own set of side effects that have made it more difficult to determine what is causing what. I am finishing the last antibiotic today and plan to start the weaning schedule my onc & I came up with a while ago. He said weaning off steroids have their own set of side effects too as it does mess with your hormones.

The docs didn't "officially" remove my ability to drive, but did say it would be months before I could since I had a greater risk of seizure than the "normal" brain. I did not want to drive at all anyway while I was getting rads and felt this way. I was often light-headed, sometimes nauseas. I do feel now like I can drive short distances during the day, like up to the grocery store, but am still hesitant to drive at night. Am hopeful to get off all steroids by next week and see how I am feeling then.

I was due to start the expanded-access T-DM1 trial (scans for trial how we found brain mets), but was told that with brain mets I have to have completed tx & be off all steroids for at least 30 days (unless steroids are being used for some other health issue, they will consider) before I can participate. Since trial site is an hour drive away, we're doing the tykerb/herceptin, a new combo for me, and when that stops responding move into the T-DM1 trial. I had not heard that the t-dm1 crosses the b-b barrier, anyone have more info on that?

Hope to hear from others how you're treatments are going!

Peace and Blessings

[Pam P]

Virginia - Thanks so much for telling your story. Today will be my 3rd wbr tx. So far too early to no what se I will have. I am on 12 mg decadron and so far that has really helped be get rid of headaches and dizzy feeling. Disturbs sleep but hasn't been intolerable yet. Please keep me up to date on how things are going for you. I seem to be following right behind you in this experience. My biggest met is 2.6 cm and I want to ask what targeted rad could be used if needed on that after i'm done with the 20 wbr txs. I was on tykerb/herceptin before this dx so I guess I won't do me any good to resume is. I had just been switched to my 1st dose of halaven the Monday before brain mets were found. I'll probably to back to that, but I don't think that crosses the brain barrier.


Best wished to you Virginia Girl now that the wbr is done and I hope all those se disappear quickly and you can get on the t=dm1 soon. Pam

[Jackie07]

FDA NEWS RELEASE

For Immediate Release: Nov. 15, 2010
Media Inquiries: Erica Jefferson, 301-796-4988, erica.jefferson@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA
FDA approves new treatment option for late-stage breast cancer
The U.S. Food and Drug Administration today approved Halaven (eribulin mesylate) to treat patients with metastatic breast cancer who have received at least two prior chemotherapy regimens for late-stage disease.
Breast cancer is the second leading cause of cancer related death among women, according to the National Cancer Institute. This year, an estimated 207,090 women will be diagnosed with breast cancer, while 39,840 women will die from the disease.
Halaven is a synthetic form of a chemotherapeutically active compound derived from the sea sponge Halichondria okadai. This injectable therapy is a microtubule inhibitor, believed to work by inhibiting cancer cell growth. Before receiving Halaven, patients should have received prior anthracycline- and taxane-based chemotherapy for early or late-stage breast cancer.
Halaven’s safety and effectiveness were established in a single study in 762 women with metastatic breast cancer who had received at least two prior chemotherapy regimens for late-stage disease. Patients were randomly assigned to receive treatment with either Halaven or a different single agent therapy chosen by their oncologist.
The study was designed to measure the length of time from when this treatment started until a patient's death (overall survival). The median overall survival for patients receiving Halaven was 13.1 months compared with 10.6 months for those who received a single agent therapy.
“There are limited treatment options for women with aggressive forms of late-stage breast cancer who have already received other therapies,” said Richard Pazdur, M.D., director of the Office of Oncology Drug Products in the FDA’s Center for Drug Evaluation and Research. "Halaven shows a clear survival benefit and is an important new option for women."
The most common side effects reported by women treated with Halaven include a decrease in infection-fighting white blood cells (neutropenia), anemia, a decrease in the number of white blood cells (leukopenia), hair loss (alopecia), fatigue, nausea, weakness (asthenia), nerve damage (peripheral neuropathy), and constipation.
Other FDA-approved therapies used to treat late-stage, refractory breast cancer include Xeloda (capecitabine) for patients with breast cancer resistant to paclitaxel and anthracycline-containing chemotherapy; Ixempra (ixabepilone) for patients with late-stage disease after failure of an anthracycline, taxane and Xeloda; and Ixempra plus Xeloda for patients with late-stage disease after failure of anthracycline- and taxane-based chemotherapy.
Halaven is marketed by Woodcliff Lakes, N.J. -based Eisai Inc.
For more information:
FDA: Office of Oncology Drug Products (http://her2support.org/AboutFDA/CentersOffices/CDER/ucm091745.htm)1

[Jackie07]

http://www.einnews.com/pr-news/336978-study-published-in-the-lancet-shows-eisai-s-halaven-tm-eribulin-significantly-improves-overall-survival-compared-with-current-treatments-in-heavily-pre-treated-metastatic-breast-cancer

[Elizabethtx]

What an inspiration you are Pam! All of you who are fighting Brain mets are amazing! Many prayers for your recovery!

[Pam P]

Jackie - Thank you so much for all the links and resources. Pam
I got a copy of the mri today - still about 8 sites as they told me but they didn't tell me that 3 were over 2 cm! Lots of disease.

[kiwigirl]

Like Pam i really appreciate your post Virgina. I'm a little ahead of Pam. 8 zaps and my decadron has been reduced to 6mg until Friday then down to 4mg.

It does make a difference to see how others went and teaches you cope...Big Thanks

Pam another one done your doing well.

Jacqui xxx

[GracePang]

Hi Pam,
Sorry for being late to chim in and sorry to hear the suck news about your brain mets. I understand your anxiety, since I experienced the same when mine was found last July. I had 12 sessions of WBR finished by early Aug, since I had over a dozen of small brain tumors; SRS was not an option for me. A follow up MRI after about 40 days showed that all tumors shinked; but by December for the 2nd round follow up, they found 3 of the old tumors became active again. They gave me gamma knife in Jan and the following up MRI was scheduled in April. I don't have much symptoms and I didn't take steroid during either WBR or Gamma knife, but I took Boswallie on my own. I feel good now, even though with some fatigues from time to time. I am on Xeloda and Tykerb now. If you have any specific questions about my experence with the treatments, please pm me. Love, Grace

[Kavy]

Hi, Pam,
I'm so sorry to hear your brain met news, but I'm glad you have a treatment plan and that you've already started WBR. I pray that WBR will zap all the mets for good, and if you have any problems with the bigger mets, you can always zap them again with SRS, like Gamma Knife, Cyberknife, Xknife, Novalis, VMAT (not familiar), or surgery.
As you know, I almost had surgery to remove 2 brain mets, but it was cancelled when I was already at the hospital because of my lung mets. I ended up having Xknife for the 3 mets, similar to Gamma knife. I have/had a 2.8 cm left cerebelum met, and my main symptom was/is balance problem, I do not feel dizzy, and I almost never have headache. I'm still on decadron, now on 2 mg a day, 1/2 a pill, but I can't wait to stop it, then I will take Boswellia Serrata. I also take zantac before decadron to avoid stomach problems. Since the procedure, I'm taking keppra, anti-seizure medication. Even though I never had seizure, I will have to take it for 3 months. I will have a MRI in April to see how things are going, but I haven't seen too much improvement so far, and my radiation oncologist said that if my balance problem does not get better, I might have to have surgery anyway.
I was on Tykerb/Herceptin for a year when I was diagnosed with brain mets. My doctor kept me on the same regime because it has kept my lung mets stable for a year now. I will see him in April, after a CT scan of the chest, but I do not think he will change my treatment.
Pam, I'm sorry you are going through this. I know that brain mets diagnosis is very scary, but once you overcome the shocking news and do your treatments, brain mets will be like lung mets, liver mets, etc. Hang in there.
I hope and pray your oncologist will make the right decision treatment plan for you later on today. And if you cannot have Halaven while doing WBR, why not keep taking Herceptin or herceptin/Tykerb until you are done?
A big hug, and healing prayers your way.
KarlaV.

[Dianedack]

Just an update on my brain met inoperable tumour. I decided to hold off on WBR for the moment as they can only see one tumour at the base of the spinal column bad place for it to be though.>
> There has been a new development I am flying to Sydney from Perth Australia for Gamma Knife treatment on my brain on Thursday at a cost of $25000!!! plus flights and living expenses at Macquarie University Hospital.. I have seen the Perth oncologgy radiation doctor today and she agress with my decision. As its my best option.They don't have the equipment needed here in Perth. The Sydney thing is a second opinion. Procedure needs to be done asap so seeing doctor there on Friday. Medicare and my health insurance don't cover this. If Medicare don't cover it neither does the health fund. Crazy system here. Small savings gone in one hit. May have to be prepared to repeat if necessary down the track but got to give it my best shot. My four lovely granddaughters need me!
>
> I am terrified about what is happening to me and so is Pete my husband. I will be in Sydney for about a week. Never been there before. I feel like I have been on a three week roller coaster ride cant sleep because of steroids and I will continuing on them for a while yet after the treatment so have to find a solution to the insomnia. I need to get this treatment on the brain done soonest as I cant start the chemo of Xeloda and the targeted therapy Tykerb for two weeks after radiotherapy and I feel I am getting worse in the other parts of the body rapidly. Could be I'm just exhausted. This is our small savings and doctor says I will most likely have to do this again down the track!!! Please Medicare approve it. Gamma knife it is apparently the best treatment available in Australia to halt my tumour for a while but no guarantees!!
>
> The targeted therapy that I will need after the gamma knife is $4000 per month plus the chemo costs of course but the combo is currently funded I don't know what will happen if it doesn't work I may have to purchase a different combo of drugs - all money and more money. Must not worry about that now though. I am lucky I can just raise the money for this treatment.
>
> Wish me luck. We will be back Thursday week..
>
> Take care of yourselves limit that mobile phone use!!
>

[kiwigirl]

Hi Diane this my be a option for me after my treatment here. Can you let me know how it goes. Life is better than money anyway your grandchildren will be be happy with your choice.

I wish we had that option here (NZ). Sydney is fun treat it like a holiday and enjoy. I really do wish you all the best. Jacqui

[Dianedack]

Hi Kiwi girl.

Yes it is surprising how behind we are compared to USA & Europe. No cyberknife any only two gamma knifes. We have only had gamma in Australia since August crazy isnt it. I will for sure let you know how it all goes I will PM if you like when I get back from treatment. You are right I need as much time with my family as I can get they are so precious to me. I hope for success. Wish me luck!

[kiwigirl]

Goodluck Diane my thoughts are with you..... YOU CAN DO IT!

A pm would be great only when your ready.

[Trish]

I don't know specifically about TDM-1 crossing BBB but my rad onc said that mets breech the BBB and it is thought that this may enable the chemo and targeted therapies to get to the mets.Good luck to you all with your brain mets treatments and thanks for sharing your stories.
Trish