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life after WBRT: when does the tiredness start?

lamorna
  • By lamorna
  • Posted September 14, 2009 at 5:25 pm · 21 replies
  • In Younger women
  • Shared with the public
0 Recommendations

hi. this is the first posting we have made on here - and hoping to get advice from some of you who are a few steps ahead of my sister...

she was diagnosed as stage iv in april this year after finding a lump in her breast. a month later ct scan showed multiple mets throughout liver. commenced taxatere and herceptin.

after having a 'funny turn' last week, mri scan and was told that she had multiple small brain mets too (11th sept 09).

commences whole brain radiation this friday (too many to gamma knife). we had planned a family holiday in disney paris (short flight from england) as she desperately wants to take her 6 year old son. we would be going 10 days after finishing wbrt. one onc said the tiredness would hit her 2 weeks after treatment, and the other onc suggested 4 weeks after. my sister would be devastated if she never gets to go, but is the timing terrible - or should we just go for it?????

we now are also commencing a battle for lapatinib/tyverb too as not currently licensed in UK, but thats a whole different story....

any advice on when the wbrt tiredness lag really hits would be greatly appreciated

thanks lamorna

Explore topics in this discussion:

Cancer Surgery Memory Radiation therapy Stress Breast cancer

21 replies

BethA

Get her a wheelchair and you take her on that vacation. She made to go back to the room to nap and may be tired....but she will love the family time trust me!

Besides, if this is her first chemo....it can take a while to really kick in.

I went to Alaska on a cruise with my kids who had just graduated, one from college, the other from high school. I was sick as a dog, and was hospitalized a week after I got back. ( nothing to do with the chemo, my gall bladder burst unrelated to cancer or chemo really)..but it's a memory my family and I will always cherish!

Good luck with your plans for her. I do hope it all turns out well...you won't regret it!

lamorna

thanks BethA for taking the time to reply. we were most wondering when the Whole Brain Radiation Therapy would start to floor her - rather than the chemo.... the chemo seems a distant memory with the discovery of the mets and the new battle she faces this week.
i think we are all just tempted to go and have a grand old time - but we are currently booked to go less than two weeks after Whole Brain supposedly (we've been told) before the side effects really hit her. we wonder if we are pushing it... of course if we cancel... who knows if we will ever get around to rearranging?

Yasou

I am currently doing whole brain radiation. My oncologist told me that tiredness whole begin at about the third week, but everyone is different. Did her radiation oncologist tell her how many treatments she will get? Did tell the other side effects that go along with wbr? If not, you need to talk with him or her.
I know what this is like. It is scary and she will need you. She will get over the fear and move on. She is doing the right thing. And if the wbr doesnt get it all, the gamma knife will.

Yasou

that first sentence should read tiredness will begin, not tiredness whole. LOL. part of the brain mets is that there is some short term memory loss, forgetfulness.

Beachbabe

No experience with WBRT but sending you lots of positive vibes and prayers that your family takes that well deserved trip to Disney!!!

((hugs to all))

lamorna

Yasou, she is having intensive WBRT - 10 days worth (though they are kindly allowing her the weekend off....). our biggest worry is that people rarely talk about gamma knife over here. it is equivalent to $15,000 dollars - and appears extremely hard to get on the old NHS.

we have reassured ourselves however that they are not just offering her a 'cheaper alternative' with the WBRT - because she has so many small brin mets, the whole lot need zapping. we managed to get her oncologist to say she would consider gamma knife if one or two lesions start to get active again - or new ones appear.

even worst in the good old UK, they DO NOT routinely offer you repeat brain scans - they wait til you get more symptoms. obviously if you are getting symptoms - then you have allowed the cancer to take hold!!! Imagine not receiving a scan in the months after WBRT - even if just to allow you to feel some element of control over the disease! Anyway, you didnt hear this from me - but we have decided to 'make up' a symptom 12 weeks post WBRT so she can get checked out.

Yasou - it would be great to stay in touch and I wish you a million pieces of golddust during your WBRT. my sister is on this site (Marty Jo) as is my mum (Burnley Anne) - but my sister is too scared to do any reading at the moment.....

beachbabe - thanks for your thoughts - i notice your name peppered across many a posting offering support and reassurance. Told my sister that you had bothered to reply to us too x

Yasou

My brain mets are scattered too. I have posted twice about them; one of the posts was entitled "they stopped counting after 15" I learned from my medical oncologist that I have 60, yes 60, small ones scattered throughout. I have consulted with another oncologist who does gamma knife and then she and my oncologist as well as my radiation oncologist came up with a plan. It was determined that the best route to go was to do whole brain radiation. If anything is left, then gamma knife.
Believe me when I first received the news, we were devastated. Even my oncologists were disappointed and said so. I presented no signs except on a Thursday when my vision was blurry. My tumor markers were down (very strange). I thought that this was just some kind of fluke or stress (the blurry vision), but my partner told my radiation oncologist and she ordered an MRI stat on a Friday and I received the news on the following Monday. Hard to take.
However, there is nothing that I can do to wish it away. We have good days and bad days. The stats are old for survival and my medical oncologist this past Monday (the 13) spent two hours with us making out a plan. I have survived for 15 years and do not intend to let this take me down. My oncologist who is quite blunt and does not offer hope when there is no hope, just told us that he had NO PLANS to GIVE UP. He thought that this suddenly appeared around Sept 1 and that it took off. He plans to start Ixempra on October 15. The course of action now focuses on the radiation which I will be given 25 doses. I am already seeing some of the side effects. My vision is still blurry; I cannot drive; I have times when I cannot think straight and I have short term memory loss.
But I refuse to give up. I have been having radiation since Jan of 09 to my right hip and femur which was about to break and had to have surgery on; I was informed that a tumor was breaking through on my T1 and that if I did not have radiation, I would become paraplegic. I did that and it was successful. I then had radiation to my lower thoracics and upper lumbar. And then as a precaution to any impending fracture, I had radiation which I just finished on Monday of this week (while having my 3rd wbr treatment). I have been in the hospital 3 times during this year and have had 14 units of blood. The muscle in my hand atrophied and is still not well. I cannot write very long nor can I type very long. I am dependent on my partner to ensure that I get my pills and to all my appointments.
I write this (actually my partner is typing this) to say never give up. I had my low points and that is why I posted two times on here. I still have low points.
Now about brain scans. Your sister needs to have a brain scan one month after her radiation. Radiation effects do not stop on the last day. It continues to work. And she may or may not have any memory loss (short term), but from all that we have researched she will. Being tired is the least of my worries. Push for a brain scan within one month, even if you have to pay for it. You need to know what is going on. You have to be her advocate. I know from experience that I could not do this alone and my partner is quite a forceful person and gets things done. She once followed my former oncologist into the elevator where she forced him to talk to him. So good luck. Stay in touch. I know you all are scared. So am I. And you need straight answers which I hope that I have given. While words of kindness are great, and I need them too, you need the straight dope so to speak

chainsawz

Yasou - in a few short postings you have become a source of inspiration for me!! I know you are scared, but in the midst of all that you are reaching out to give advice and comfort to others who are also caught in this crazy brain mets...like me.

Lamorna, I am currently on a tykerb\herceptin combo. They were very hesitant when I asked for the combination but I printed out studies. The oncologist looked at the data and agreed to give it a try. I expected a HUGE fight from my insurance, but not even a whimper to my surprise!! I wonder if this is something you can push and maybe with the new data it may not be so hard?! Your sister is lucky to have you in her corner!! Best to you and your sister. lisa

lamorna

Lisa, thanks for that - dont suppose you know the best places to look for the supporting literature? the most important research i have found is studies (well only 1 independent one actually!) suggesting that lapatinib crosses the blood brain barrier where herceptin does not. Martines Onc has already said 'well theres not much evidence' so we're guessing we will need to show her we mean business and are now preparing for her appt in 2 1/2 weeks time! Any tip-offs greatly received and we will keep you posted.

Yasou, am desperate to get my sister to log on and read your reply too - am sure she would find your hardcore determination a source of inspiration to her. I loved the thought of your partner pressing the alarm button in the lift between floors (have embellished your story a bit!!) to pin down your last Onc!! Whatever it takes.... the ones who love you will ALWAYS do whatever it takes.

Am thinking of you all, Manda

chainsawz

Manda - I really stink at research, maybe Groovygirlcool has more info on this and will post?? Anyway, I will list some of the stuff I have....probably not the best, but may help??

Here's some of what I have on the combo of tykerb\herceptin:

http://professional.cancerconsultants.com/conference_main.aspx?id=42119
Reference: O'Shaughnessy J, Blackwell KL, Burstein H, et al. A randomized study of lapatinib alone or in combination with trastuzumab in heavily pretreated HER2+ metastatic breast cancer progressing on trastuzumab therapy. Program and abstracts of the 44th American Society of Clinical Oncology Annual Meeting; May 30 - June 3, 2008; Chicago, Illinois. Abstract 1015


http://www.medicalnewstoday.com/articles/108237.php
Results Of First Phase III Trial Evaluating Tykerb(TM) Tablets Plus Herceptin(R) Presented At ASCO


Here's the site I have on the tykerb blood brain barrier (old info but has the study number):

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/12-0 9-2005/0004231041&EDATE=
GlaxoSmithKline Initiates Trial Of Tykerb (Lapatinib) in Patients With ErbB2- Overexpressing Breast Cancer Brain Metastasis Following Herceptin and Cranial Radiotherapy



SAN ANTONIO, Dec. 9 /PRNewswire-FirstCall/ -- GlaxoSmithKline (GSK) has announced the initiation of a global multicenter Phase II trial (known as
EGF105084) to evaluate Tykerb (lapatinib) for the treatment of ErbB2- overexpressing (HER2+) breast cancer that has metastasized to the brain.
Tykerb is an orally bioavailable small molecule which potently inhibits, two receptors, ErbB2 and ErbB1, and is currently in development as a first-line
treatment for ErbB2-overexpressing breast cancer.

lamorna

It's 4am, having warm milk on my sofa as cant sleep... Now i have something useful to do!! thanks Lisa - will get onto all this and maybe drop groovycoolgirl a line or two

Goodnight!

Yasou

Laorna: My sentence of my last post to you read : "She once followed my former oncologist into the elevator where she forced him to talk to her." She never pushed an alarm button. Perhaps I am reading your post wrong but I do not embellish something as serious as this.

Chainsaw had done a great job with giving you information about tykerb. I was on it for a year give or take a month. I was taking tykerb with xeloda but that combo did not work for me. I then started tykerb with navelbine. In one of my posts on this site, I think I said that while I was getting this combo, my vision became blurred. My radiation oncologist called for a brain scan and while lying on the table, my answering machine was taking a message from my medical oncologist telling how pleased he was that my tumor markers came down. Well, what can I say. We were all surprised with the results.
Tykerb is a wonderful drug but it stopped working for me. Good luck and keep pushing. A thought just popped up. Even if you live out of country, you can go to M.D. Anderson and they may be able to help you. I went there for almost 9 years.

lamorna

yasou - i meant that i imagined your partner being willing to go as far as push the alarm button had she have needed to - and it gave me comfort that we have such strong people around us to do what it takes.

had a very constructive night looking through the literature and got loads of very new research papers that will 1) Help us convince Martines onc to give us lapatinib, and 2) provide reassurance that things are being developed at such a speed that another herceptin/lapatinib wonder drug is just around the corner.

i will try and summarise the papers i found (primarily relating to Lapatinib and the treatment of brain mets) and will post here as may be helpful to others. Thanks chainsawz for getting me going

Yasou

Lamore, I might have heard you wrong or saw it wrong when you said something about the embellishment. In no way was I trying to be insulting. I just want you to know that this is a hard row and people who have cancer cannot go it alone. I couldnt do it without my partner. She has to listen even more now because the whole brain radiation is wiping out some of my short term memory. I dont want to go into details about the consequences of whole brain radiation but I can say that it is scary. We wish your sister and your family the very best- the very best for years to come. If you need more information, you can add me as a friend.

lamorna

yasou, i didnt think you were insulting at all - i was worried i had offended you! would love to add you as a friend as have often read your postings - even before we knew that you were on a similar journey to Martine. It was her little boys 6th birthday yesterday and she picked herself up and give him a lovely party. Her whole brain radiation starts today. May the next battle commence....

this posting started with a question as to when her extreme fatigue might set in. at the moment we are still planning on going to eurodisney on October 10th - less than 2 weeks after she finishes wbrt. gosh i hope we are making the right decision...

littleflower1215

Hi, I'm not sure how the radiation will go but when I was undergoing chemo treatment the first time, my family and I went to DisneyWorld. My oncologist wrote me a letter saying I was undergoing treatment, and Disney issued us 6 passes to go to the front of the line. I always had to be with the people who wanted to go in, but this really changed the whole vacation for us. It was fantastic! Hope they do the same at eurodisney.

lamorna

littleflower - will look into this - thanks for the tip off!

gypsygrl

Sending a "Big Late Happy 6th Birthday" to your son! Six years old is such a magical fun age as the whole world starts to open to him. :-))
And oh how I hope your Paris-Disney trip will be a joyful celebration....you all will have earned your Mickey Mouse Ears!
I am a week or so behind you as I will start my WBRT tomorrow, Tues. Oh how life can change in an instant, huh?
Much hope and Many heartfelt good wishes to you!

gypsygrl

lamorna,
I am wondering how you are doing. I had my first WBRT yesterday, only 17 more to go.....I do believe it was the hardest thing I have ever done.....not the treatment,, but to just walk in that room and lay down for the mask. Now to wait for side effects!!! and results!!!! and hope and pray it works---just like you are.
Soooo, I am sending you all I have of hope, prayers, for successful treatment and may you dance and rock out with your son at his wedding :-)
Wishing you Sunshine, Lollipops, Rainbows and Joy!

gypsygrl

Thinking of you and sending prayers, healing ,hope to you and your son and family and caregivers. Love and (((((Warm Gentle Hugs To You))))



(I have had 9 WBRT , 9 to go----)

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