WBR after craniotomy? chemo how often?

[Velva]

I am to see a radiation oncologist on Tues. 11/30/04, about possible WBR. I had 1 tumor in my cerebellum that was surgically removed on 11/10/04. They said 100% of 3.8cm tumor was removed. Oncs seem to think I will have a recurrence in brain if I don't have WBR.
Also, with th combo Carboplatin/Taxotere/Herceptin, how often is it taken? I've had taxotere before, every 3 weeks in 2000-2001, Herceptin weekly. Just wondering if your hair comes out with it? WBR is it permanent? Vain isn't it! Thanks in advance. Positive thoughts, Velva

[Lolly]

Hi Velva, congratulations on your successful surgery! Hope you're recovering well from that, it sounds like you're on the mend. I don't know personally about the WBR, but from what the other gals have posted it seems like the standard to have WBR to "mop up" after either surgery or gammaknife. I'm sure some others will post with their experiences, just wanted to say good for you!

Love, Lolly

[Guest-Christine_*]

Velva
It's great to hear your craniotmy was sucessful. It is always asumed that you will get recurrent tumors in vaious locations and having a short course of WBR at this time can reduce that risk a great deal. I never had a craniotomy 'cause my tumors were less than 2 cm, however, I did have Gamma-knife first that proved to be an insuffient TX. I had a recurrence 6 months later that led me to have WBR daily for 20 days. It did work for me, and I WOULD RECOMMEND IT EVEN IF HAIR LOSS is an issue with you. My hair has had little regrowth, but I found wigs to be easy and convient . aia picked wigs that are light weight and styles that suit me well. The major problem must be resolved and this is the treatment of choice. It can be a fstiguing Tx, but well woth it. LKater in time you will be scheduled by you radiation Onc for intervals of Brain MRI on a routine basis w/ longer intervals as you make progress. If you relapse, You will have another good option,Gamma-kfe or Cyber-knife. the stereotactic form of radiation surgery. It is not so unvasive and take a few hours.
Good luck, Isure you are doing the right Tx. It maybe shorter than my Tx, being you no longer have large tumors. The focus is now on getting rid of the lurking seedlings and undetectable micro- invasive brain mets. Sending you Well Wishes and Hugs, Christine

[Guest-Christine_*]

Velma, The chemo ragieme sounds tough, you need to find out if there is evidence that thiis combo can penetrate the blood brain barrier. I understand that the Platins can pass thru. Ask for documentation. It could be a new protocal unknown to me. Let me know what your Onc plans are for you. Christine- email me your TEL# if you want to talk.

[lu ann]

Hi Velva, I just finished 6 months of taxol, (is a taxane like taxatare) carboplatin, herceptin, and zometa. I had the taxol, carboplatin, and the herceptin once a week for three weeks at 1/3 the dose normally given every three weeks. The zometa for bone mets was given once a month. I tolerated the treatment very well with few side effects. I did lose 90% of my hair but it started growing back about 3 months ago. I had widespread disease in my bones and chest. My tumor markes are normal and there is no progression. I just had a normal brain MRI. I started navelbine last week to clean up the rest. Don't apologize for being vain about your hair. It is another loss that most of us can grieve over. Just get the best treatment to get rid of the disease so you can go on with life. Love and Blessings, Lu Ann.

[Kathie in New Jersey]

I had the same exact surgery and size tumor in my cerebellum. I had 10 days of radiation with weekends skipped. I lost all my hair and the hair never grew back as thick as it was. The Dr. said it may not grow back at all so I was the lucky one. My friend who had the same surgery and rads, hair grew back but was also thin. I am on taxol/gemzar/herceptin and I receive the threesome once a month and the t/g every two weeks. The taxol made me loose my hair for the third time , I might add. It is growing back during treatment but really , really thin, I think once I'm done it will probably grow back better. Good Luck with your treatment- be prepared to be very , very tired from the rads

Kathie

[Velva]

Thanks for your reply. Tomorrow I will see about WBR. The chemo regiman is for treating skin mets & CA cells in bloodstream. I will be asking questions. You all have been through alot and your information helps.
Positive thoughts, Velva

[Lyn]

Hi there, I have just finished 26 weekly doses of Herceptin/Taxol/Carboplatin for reoccurences in the neck, not had anything to the brain but very stubbon lump in my neck, first found in January 2003 but only treated from February this year, all my tests have just come back NED, bloosa, CT,Bone Scan and MRI head and neck, my problem has been peripheral neuoropthy and weekly doses are supposed to be less toxic on the system, I never had any problems with my bloods so didn't miss a treatment except for when I had a severe lung infection compromised by chemo and only skipped one week, also with the premeds I opted for a tablet anti-histimine so I didn't sleep and go through the day in a fog it was Telfast hope this helps. lso if you can do me a favour and add Flaxseed Oil Capsules to your supplements if you haven't already done so, 1000mg, 2 twice a day. I have only been on it for about 2 months but my hair has been growing back and I actually felt the Chemo kick start again in my neck and my heart is better than it was 3 months ago after going through heart failure October last year, my LV is 53% and smaller than before as a result of the heart failure.


Love & Hugs Lyn

Love & Hugs Lyn

[Lyn - PS]

Hi again, my radiated area at the back of my skull is still bald so I guess that area will lake longer to come back, and that is from both sides not just the recent radiation, do s tuft of hair where the radiation doesn't overlapp.

Love & Hugs Lyn

[Alicia]

Velva,
I am going in the opposite order, I had WBR first. I was really terrified...just about loss of brain cells etc. I can tell you that after one month of being finished asside from tiredness and mild nausua I feel really good. I just a talk with my onc. she was adament from the beginning that I would need WBR her reasoning was that if there was two there more waiting to pop up. She believes that the THC chemo is so effective for some of us preventing spreads to bodily organs and getting us to NED that the place where it can easily pop up is in the brain....due to it not being able to cross the blood brain barier. She has heard talk of doing preventitive WBR due to the high number of patients like us that are getting brain mets with otherwise healthy bodies. I was also told that my hair will not go back ... I lost all of it again except for little tufts here and there. I was extremely depressed about this at the beginning...but I look at my kids and figure oh well. I am still crossing my fingers to be one that gets some hair back!!! Hope you are doing well, alicia

[Kristen]

Good Morning Velva,

It is good to hear your getting such good and honest advice. I just wanted to say Hey, and I hope that you are doing fine.

I was on that combo, for first time and only time. So don't think my imput would be relavent.

I am just so glad you are up and around and sounding great and getting all the info you can. You amaze me. Take Care Velva, K

[Sandy H.]

We have to appreciate the good news from all of this. As for the hair I have worn wigs for a while now and decided they are not all that bad. Easy to flop on and go. I have several (figured I saved lots of money on cuts, etc) so decided to treat myself each time I lost my hair. My beautican is wonderful for sytling and choosing colors and styles to compliment my skin color. Of course she knew me well and did my hair coloring before loss of hair. I did it once on my own what a disaster that was as the color just did not go with my coloring. I have not had WBR so can not comment of the hair but I did have HTC and my hair got so thin that it was easier for me to just clip it off. I couldn't stand the hair constantly falling out. Besides my wigs stayed in place much better. The one thing I would suggest is have a beautician that you feel comfortable with pick out a wig for you. I take books in and she sits down with me and we pick them out together. www.twcwigs.com has nice wigs and are reasonable. I sent and got a dozen color samples and that is how we picked a color. I wish you well. Big hugs to you, Sandy

[Cathy W]

I did this chemo combo for 27 weeks. I weathered it well, and lost about 50% of my hair. When I went from 21 day cycles to 7 day cycles my hair started to come back in. My tumor markers were incredibly high before I started, and the combo worked well for me. I have been off it and just doing herceptin and zomeda since the end of August. My tumor markers have steadily risen and it's time to start something else (probably Navelbine).
Good luck--let us know how you're doing.
Cathy