Me again, need answers, please

Adriana Mangus · 08-12-2010, 09:20 PM

Hi everyone,

I met with the radiologo oncologist today, she explained to me that due to the fact that the same area-rt side- has been previously radiated, there is a possibility I might end up with scar tissue which can be very painful, but she also said that we can leave it alone, unless if it's interfering with my quality of life. Of course it is!!!

I agreed to meet with her tomorrow to initiate the radiation treatment and work out a plan. However, after I got home I started thinking that I really do not need to have radiation to shrink the tumor in the rib, I do qualify for the TDM1 trial, and have been waiting on the doc to get me in. I then sent the onc. a message asking him for a frank and honest answer as to the lenght of time it takes for me to get approved by the IC. We've been waiting for over 6 weeks now and it's not acceptable.

So, this is what I'll do. If doc says I have to wait even longer, I will just go on my own. I can no longer wait. I have been off chemo since May, - only Herceptin, I don't want to believe that this break caused the ca in the rib, but who knows. I also believe I've been irresponsibe for not taking a more aggresive approach with the doc.

I now just hope the trial works for me.

Any words of encouragement/advice/ideas, will be very much appreciated.

Thank you,

Adriana

Sheila · 08-13-2010, 05:25 AM

Adriana
Unfortunately sometimes we have to do what we can on our own to get the ball rolling....glad to see you are doing that...that is what I had to do when I was denied Tykerb....that waiting without treatment is very hard....you are in my prayers for a quick response and excellent results with the TDM-1.....so glad you are taking the bull by the horns!!!

ElaineM · 08-13-2010, 10:22 AM

Sometimes we just have to bite the bullet and take control of our own destiny no matter what the doctor says or how long it takes the doctor to get around to doing things for us. I do that myself. I decide how long I am willing to wait if the doctor seems to be taking an excess amount of time to get things done. Either I do my own thing or go find another doctor to help me. Good luck. Take good care of yourself. We have our fingers crossed for you whichever way you decide to go.

tricia keegan · 08-13-2010, 01:31 PM

Adrianna, I don't have any advice to add but want to wish you well whatever you decide.

Julie2 · 08-13-2010, 03:12 PM

Adriana,

I saw your signature and you are eligible for TDM1 EAP. If there is a center near you who offers it, it doesn't take much time to start the drug. You just need to have the recent scan and echo. I went through the screenign process and I was rejected becuase I didn't take xeloda in metastatic setting. The protocol is updated recently please check the website or ask the trial coordinator.

Julie

Lani · 08-14-2010, 12:54 AM

Just in case the TDM1 does not shrink the rib met or you don't get in the trial, it might be useful to know that you can mitigate the chances that you develop post radiation fibrosis by taking a combination of trental and vitamin E for about 2- 3 years post radiation. Search and see my previous posts, and if you don't see it go to Pub Med or ask me on this site.

In addition, is there a way to do Cyberknife or other more exactly targetted radiation to the rib so as to avoid repeat radiation of areas that didn't need radiation in the first place, but just were innocent bystanders due to the nature of non-specific (vs stereotactic cyber or gammaknife) radiation fields?

I am not trying to be negative ie, in planning what to do if it doesn't work/you don't get in...rather, I think it helps psychologically to have the ammunition of a Plan B in your pocket to avoid panicking if something doesn't go according to plan.

It seems, many feel powerless in the face of cancer, but armed with ammunition and "Plan Bs" some are better able to adapt and proceed with the fight.

Joan M · 08-18-2010, 03:07 PM

Adriana,

I'm praying that you get an answer soon. Waiting is very tiring and emotionally draining.

Joan

PatE · 08-18-2010, 05:26 PM

Hi,
I am stage iV, I had a liver met, last December my pet showed a spot on my spine L2. I wasn't in pain really didnt suspect it was there. My Onc thought we should just wait and watch. I really wasn't comfortable with that.

My liver spot was treated with Cyberknife in August 2008, 3 treatments no pain or problems. I went shopping after the third treatment. CK is very very easy! So I contacted my Rad Onc who agreed that Cyberknife could be very effective with the second spot so I had CK treatment to spine in May, 2010.

My last Pet was fantastic:

There is not a cancer related mention of my liver anymore:
"There is normal metabolic activity within the liver, spleen, kidneys, bowel, and bladder"
I didn't think this was possible, previous scans always mentioned something but dare I say my liver is cured. Who really knows.

Spine
"Image of the visualized skelton demonstrate interval decrease in size and metabolic activity involving the hypermetabolic osseous metastasis involving the left side of L2 vertebral body. The max SUV on the current study measures 3.2, previously measuring 8.9. No additional areas, etc...."

I hope this helps your comfort level with CK, make sure your Rad Onc has a machine otherwise you probably don't have a prayer of being referred for treatment. Traditional Rads aren't too happy with the new cancer machine on the block ... unfortunately if their center doesn't have the machine they make very little money.
Please email me if I can help, praying for soon to come treatment, good luck on the TDMI too I can't comment on that.
Oh I am on Herceptin weekly, I was off for four months when I got the spot on the spine due to ef problem.