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Linda428 View Drop Down
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    Posted: Jan 08 2014 at 9:23pm
I was originally diagnosed with tnbc in October 2011. I did Taxol and FAC followed by a mastectomy and my oncologist told me I was cured. Eight months later the cancer was back in one lymph node (my nodes were not involved the first time). They immediately started me on Eribuilin but I had a mixed response and they found some nodules on my lungs and a node in my bronchial. They recommended a clinical trial but it failed. They recommended another clinical trial and while I was on it they found 2 brain tumors. Had gamma knife and when I went for my four week MRI they found 3 more tumors and I had gamma knife again. Next week is my four week MRI and I'm very nervous. Can any of you share your experience with brain mets and tell me what your treatment has been for them. I keep reading about a poor prognosis for anyone with brain mets but I refuse to accept that. Please tell me there is hope.
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snickers View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snickers Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2014 at 12:22pm
update....I just found out I have numerous (about 20 in the mm size) and WBR is the recommended way to go due to:
1)My quality of life (QOL)is the #1 importance and I have spoken to TWO opinions leading in gamma and WBR and both said based on my "wants" of QOL vs Quantity of Life (QOL) and they said that if I do the gamma knife first...it is a strong possiblitity that I would have to come back and do the gamma. Why waste recuperation time doing the gamma first, waiting 6 weeks to come back to "the new normal", get over the fatigue, etc. Then having to do the WBR, 10-15 weeks of procedure, fatigue, etc. That is time out of my QOL. Both doctors adamantly (AND I AM STRESSING THIS) that neither procedure causes the major side effects you read about (short term memory loss, drooling, etc. IT IS THE TUMORS THAT CAUSE THESE SYMTOMS). If you are not exhibiting these behaviors now, chances are you will not exhibit them after the procedure(s) start as they are reducing the tumor sizes which will relieve a potential problem. With that said, yes WRB and gamma both will cause short term memory loss and patient after about 6 weeks will regain some (lists are a MUST) and prioritizing your life so you do not feel overwhelmed is also important. Less stress, less brain confusion!!!!
2)with that said, NO ONE can decide which way to go. I am 100% a gamma knife candidate but I have decided to attack my mets aggressively as TNBC patients seem to always have to do. I am currently taking Xeloda which does pass through the blood brain barrier (BBB) and taking steriods.
3)yes I will lose my hair but who the hell cares. I am so far past my vanity and for me it is a low priority on my LIST.
I hope this helps....you utlimately must decide what to do and whatever feels right for you is the correct answer. JUST PLEASE make sure you understand that some of the side effects they tell you about WBR is based on some older patients already exhibiting these behaviors and is NOT caused by WBR. WBR has been around for years and years whereas gamma last 5 years. That is what is so damn frusturating with cancer, there is NEVER a black and white answer. Patient has to reaserch...sigh...and then decide. Science is such a grey area. Do what makes you feel comfortable and decide what is most important for you....QOL or QOL. For me QOL (get er done) getting it done as fast as I can and see if it it works fits in with my life plans!!
Hope this helps
Get two opinions if you can! I went to University of Washington which is a top rated research hospital and my doc is a teaching professor with all the cutting edge information so his decision assisted me greatly!
lots of kind wishes
Snickers
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2014 at 12:23pm
Linda,
I hope someone comes along to give you advise.  I know some people do ok with brain mets for many years. Wishing you the best on the MRI 
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2014 at 12:52pm
Linda, for an alternate opinion, I attended the San Antonio Breast Cancer symposium (SABC) this year and heard a talk on just this topic.  The speaker was against WBR except as a treatment of last resort, due to the decreased QOL she has observed in her patients.  If you follow her recommendation, you would repeat Gamma if necessary and avoid WBR unless all other modalities fail.    That said, I have a friend who had a single solitary brain met, and she had surgery and WBR and is doing well over 6 years later.   It seems that WBR causes major problems in some people but not in others, and it is impossible to tell in advance which camp one will fall into.  

I'm so sorry you are dealing with this.  It truly sucks.   I hope your scans next week are clear and that your anxiety lifts.

Best,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2014 at 1:02pm
Snickers- I am so very sorry to hear about the brain mets.  Based on what dmwolf said, maybe you'll want a third opinion? But time is of the essence I would imagine and the fact that you have quite a few lesions WBR may be the best choice.

Linda - very sorry to hear about this development. Sounds like you have and are doing everything possible.  What trials were you on?

All the best,
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda428 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2014 at 4:06pm
Thanks for your opinions. My oncologist has recommended Xelloda but I hesitate because I'm so sensitive to chemo---more than most people she tells me. What side affects have you had on it? I don't care about losing my hair either---I haven't had hair for two years anyway. The two trials I was on were EMD and LGK974. I just got back from a visit to UNC but they couldn't recommend anything different than Xeloda --- I just haven't heard that much about it or it's side affects.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2014 at 2:40pm
There's a lady who goes by the username "leggo" on breastcancer.org who refused any kind of radiation on her brain mets and instead took DCA.  DCA is like a supplement discovered and studied in Canada and touted to cure cancers in mice.  Anyway, leggo is almost certain her brain mets shrank because of DCA.  She is a dietician and uses other supplements as well.

Here's a blurb from ACS:

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/dichloroacetate--dca-

Good luck and take care.

Brenda


Edited by Adnerb - Jan 10 2014 at 2:43pm
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Linda428 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda428 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2014 at 9:47am
Thanks Adnerb! I'll look into it!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snickers Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2014 at 10:15am
Ladies
I have researched WBR vs gamma knife and I am willing to take the risk to go WBR. Science has been doing WBR for many many years and each person is different in WHAT type of treatment matches their lifestyle.
WBR does NOT (per the 4 doctors I have visited in the last week) cause drooling, seizures, etc. All said if you are not experiencing those today you PROBABLY will not experience them afterwards. Your recovery is based on:
your age
your progression prior to the procedure (i.e. are you staggering now, drooling, having seizures, etc.)
so far I have had not symptoms except I am a little shaky on my feet once I stand up...like getting off of a cruise ship and you are a little wobbly, but after standing I can walk, run, climb stairs, etc. If I did not have nausea during New Years I probably would have waited to contact my onc. but I have a titatinium tummy and upchucking two nites in a row (not alcohol induced....lol) I immediately got a MRI.
I am on steriods rite now which I HATE...it is shrinking the edema (water around the irritated tumors) so is helping.
The reason I chose the WBR is that I want to do a 15 day vs 10 day treatment...lower rads, easier recouperation time, etc. This will then allow me to follow up in about 4 weeks for a MRI then I can jump into a gamma knife if need be.
All my mets are gamma "approved" I just want to get the bastards out and the ones that gamma CANNOT see due to MRI not being able to find all of them...THEN go back if needed.
AM I scared???? Hell yes, but I am going to fight this to the end
Both my radiation docs say apprx. 7 months to live, but my chemo onc. said NO!!! Those are all stats based on different people handling treatment plans. If I believed all the stats I would be pushing up daises rite now. I was given 3 months to live in June 2011 and here I am
My liver mets came back in a huge huge cluster Aug. 2013 again give 3 months to live, did a y90 radioembolization and found out 80 percent are gone. My radiation doc. IS SHOCKED. He said that was the fastest positive results he has ever seen and he does 600 of these a year. One of my tumors was 9 cm and is down to the mm!!!
This is positive as it seems my body responds well to radiation and all the chemos I have had.
Only life style I need to change, which I have already, is to simply my life so I do not overstress myself out and get my brain tired. The more tired you are, the less likely you can focus. I that has NOTHING to do with have brain mets. That is life.
So, I am on my next cancer journey and fighting is my first, middle and last name. My husband and 4 dogs keep me going strong.
I am still active in Guide Dogs for the Blind which is my passion and that keeps me young.
I love all you ladies
Snickers



Edited by snickers - Jan 12 2014 at 10:18am
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2014 at 1:57pm
Snickers,
I see you are on Xeloda.  How long have you been on it?  What is your dosage?  I am on if for lung mets found on CT on 12/4/13.  Had a biopsy on 12/16/13 and confirmed it to be TNBC.  I take 2,000 mg a day for 7 days on and 7 days off.  I just started my second cycle.  My hair is still there; I just wanted to know if I should go get it cut today or wait for it to just fall out.
 
Thank you for your post.
 
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snickers Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2014 at 2:05pm
I am on Xeloda 7 days on 7 days off..650 mg twice day.
Xeloda does not make your hair fall out. I have had no hand/foot symptoms as of yet.
Everyone is difference so please do not compare my mg amt to yours.
It is a good drug that does pass though the brain barrier!!
For me, I think my brain mets grew when I was off chemo off all types for 2 months due to very low platelet levels.
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kiwikid Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2014 at 10:59pm
Hi Diana - I had nine months on xeloda for bone and lymph node mets I had significant overall reduction on it. I had minimal side effects and managed to still work full time. Your hair will not fall out so don't cut it off.  YEAH -I was so excited when I knew I could keep my hair.I did 14 days on then 7 days off.  Even managed a moths overseas trip on the drug!! Good luck I hope it works well for you for a very long time - Sandy xxx
 
Snickers - I am very sorry to read about your brain mets...looks like you have a good fighting spirit and have done your homework on what to do next. I wish you all the very best for your treatment plan. Sandy xxx
 
 


Edited by kiwikid - Jan 12 2014 at 11:03pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 1:15pm
Snickers and Linda,

You are both so brave and strong!  I am praying for your healing and for the radiation (whether WBR or gamma knife) to eradicate all brain mets.

Snickers, I was thrilled to hear of the quick success of the Y90 radioembolization treatment for the liver mets.  Another miracle!  You continue to be an inspiration.

Hugs,
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2014 at 6:33pm
Snickers,

You have defied the odds so far, no reason to think that will change. You have incredible courage and strength, which I truly admire. I hope you will have the same success with WBR as you did with gemzar/carbo. 

Wishing you all the best,
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 3:30pm
Snicker,
This is the topic where we discussed using Xeloda for my lung mets.  Well, now I have a 2.4 cm tumor in brain as well.  I had to stop the Xeloda and am scheduled to start WBR on Monday. (See topic - Need Advise)
 
I am concerned about side effects.  I wasn't worried until I ready "older people" may have more problems.  I'm 63 years old and still working.  I do book work, so I need to keep my faculties sharp until I can finish training my replacement.  Are there any other effects you know without me having to read a book?
 
I do notice with the edema I am having problems, (beyond the massive headaches) like I couldn't do simple math in my head today.  4 pills a day for 30 days does not equal 40 pills as I was prescribed (30 day supply)  Oh yeah, I guess I won't need them for 30 days.  Also, I get snappy and sometimes bust into uncontrollable tear for no real reason.  I tell people I've lost my "filters".  I cannot control what comes out sometimes.  These are recent changes I've noticed.  I certainly pray I can come back from this.
 
I need my mobility.  I am on oxygen, so I do have to take tanks with me.  I read the gauge on the tank and thought it read full...it was empty.  I went to the Rad Onc place only 2 times and both times my tank went empty.  They must think I'm a "Ditz".
 
I've had to stop the Xeloda till I finish Rads.  We were going to do WBR 15 times and follow with 3-5 boosts after that to the tumor.  Yesterday they think they can do the whole thing using "Tomo or Toma?" radiation and do the boost during the same schedule to cut down on the weeks I am away from nothing being done to address my Lung mets.  I have a CT Scan on Monday to check Xeloda performance.
 
I'm not up on the Tomo radiation as it compares to others and at this point, I haven't the energy to look into it.
 
You are right QOL is number 1HugHugHug
 
Thank you, 
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 3:42pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 3:45pm
Denise,
I'm interested in knowing the thinking behind doing possibly multiple Gamma knife instead of WBR.  Yeah, it "Maybe" only a one time thing, but I'm concerned about the risks.  Perhaps I'm just not informed enough about the procedure since I ruled out the surgery from the start.  I have lung mets and COPD too, so I would not be a good candidate for surgery.
 
Does the brain get damaged during the Gamma procedure? (Good tissue destroyed?)  
 
Why would WBR be a "last resort"?
 
What were the "major problems in some people" getting WBR?
 
Thank you,  HugHugHug
Diana
 
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 4:24pm
Donna,
Outstanding information!!! Thank you for the rapid response.  I now understand how it works.  Now I can breathe.
 
Its great work you do for all of us!
 
Thank you,  HugHugHug
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snickers Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 6:18pm
Diana
I did WBR for 3 weeks Mon-Fri and it takes NO LONGER than 2 minutes once you are on the table with your mask in place.It was painless, but the side effects actually were worse for me than taking chemo (I have not had hardly any s.e. with any of my chemos). Fatigue was my number one complaint, slight headaches, burns behind my ears and corner of my eye lids (rad onc gave me some cream and it fixed both within 4 days) and indigestion (I do not know if that was from WBR or Xeloda). I stopped taking Xeloda as it only worked for me for 3 months so starting Monday I will be on Cisplatin/Vinorelbine. I was asked prior to starting my WBR what I did for a living and I am retired. I have heard it COULD effect some of your cognitive thinking (I am 51) but so far only thing I have noticed is my short term memory loss (but I cannot definitively state that was caused from WBR as I have been stage iv for 2 1/2 year and chemo does take its toll on ones body). I will be getting my MRI next Friday and if I still have spots I might do gamma knife.
Regarding your dexamethasone (steroid that shrinks your brain swelling) I HATED the pills. After about 10 days of taking them I complained to my radiation onc. and he slowly (yes you cannot just quite them) decreased the dosage. After two weeks my face returned to normal (was puffy and red) and I felt better. My appetite went back to "normal" as I gained 10 pounds!!!! I am still not as strong as I used to be, a little shaky on my feet, but I can still walk 3 miles per day, just takes me longer.
Addressing your book work....yes, you might have to give yourself more time to complete your task and might have to re-check your work. Best thing is to not tire yourself out and reduce your stress levels by setting priorities in your life.
Snappy, yes when I was first dx with mets I noticed I was on the edge and short with people. Once I did my WBR I have calmed back down.
There is scary stories about WBR and there is lots of success stories also. You have to go with your gut feeling. If you only have one tumor why are you not doing gamma knife? It is a large tumor but they can do it in two different appointments. One of my tumors was 2.1 cm and gamma expert told me he could zap it in two sessions and zap the others in one. I opted to go with WBR since I had more than one tumor (all the rest were very very tiny). I was nervous about doing the gamma with all my small tumors are there could be some not showing up on the MRI so that made my decision easier.
I hope all this helps...please keep in touch with me!!!!
Snickers
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2014 at 7:07pm
Snickers,
They wouldn't do the WBR while I was on the Xeloda.  It amplifies the rads...not a thing you want to do in the brain.  I should have been on them this week, but now if/when I get back on them will be at least a 4-5 weeks of no treatment to the lung mets.   You were on the Xeloda while getting rads?
 
How soon after you started radiation did you begin to feel the fatigue?  Was it the same day or was it a slow onset?  What about the headaches?  I know we will all have a different experience, but I want some "landmarks" to look for.
 
They want me to stay on the steroids all thru the radiation.  They will then step me down; but you know all this is subject to change depending on how I react.  Did you get the yeast infection in your mouth from the Roids?  Not Fun!
 
I don't want the scary stories.  I need to keep a positive outlook on this now.  I'd rather make my decision on what I know now instead of bringing in all the negative "stuff".  Sometimes all you get is that. The good "stuff" people get better and move on. 
 
I didn't want to do the knife due to the lung issues.  I have multiple lung mets, not just the one big one.  Since my cancer seems to like to take off and grow while on chemo I am sure the one in my brain has some tiny "buddies" hanging around just waiting to take over once the big guy is out of the way.  Yeah, it doesn't make sense to you, but it does to me.
 
I don't want to have to keep coming back over and over again to get this done with.
 
Thank you for all your input and I will definitely stay in touch.
 
All the best to you!  Hug
Diana
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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