Hello Help Round 3 or something like that!

jones7676 · 04-11-2009, 09:40 AM

Hello,

Life has been good/bad for me. I did get to come home right after the Gamma but was still pretty tired etc from the chemo the week before and just seem to be coming back around now. I have chemo scheduled for this coming Thursday so I only have the coming days to work hard on options.

I did successfully complete the Gamma Knife. They did see 3 little teeny spots and took care of them as well. It was quite a bit longer than originally expected, however they took great care of me and I "expect" to have good news in 6 weeks when they scan me again.

The bad news is the chemo they are giving me does not feel like it is working on me. (although the first treatment wasn't a full dose to see reaction and so I've only had 1 full dose but had the mets since Dec.) And my feet are real puffy, my underarms are real puffy and I'm afraid they may pull it because of the side effects and they haven't told me when they will check to see if it is working. I'm afraid they are going to let it go to far before I change if needed and the only other chemo they offer where I am they believe has low odds of working.

I'm looking online for good places to go to get my lung mets treated better, but it is hard to figure out. I know that fast and correct action can make all the difference so it is hard to figure out what to do.

So, I'm trying to hit web sites as fast as I can and prepare to go somewhere to get better treatment.

If you are one of the wise people who have went through this or believe that you go for treatment where they tend to be much better at this....once again let me know as I had taken some notes in the past but could use realy current info.

Thanks for any help you can offer.

Barb

Rich66 · 04-11-2009, 10:17 AM

What options for lung mets are you considering? I am only aware of RFA and Cyberknife. ooops. Just read a thread elsewhere about Tomotherapy being used for lung mets.

Jackie07 · 04-11-2009, 02:24 PM

Glad your Gamma-Knife procedure went well. Several members have had experiences on the mets that you are dealing with. Let's hope they will see this and send a reply.

Joan M · 04-11-2009, 04:21 PM

Barb,

It's very good news about the Gamma procedure and I'm praying that in six weeks your scan will be clean.

I had a lung RFA. It treated the recurrence I had after having a solitary nodule removed via a wedge resection a year prior. But I think the number of lung mets has to be limited for a lung RFA.

Which chemo are you on? It seems like Doxil/Tykerb from your signature.

I have not had chemo because when the lung and brain mets were removed I was NED, so I've been only on Herceptin.

Joan

Rich66 · 04-11-2009, 07:53 PM

Found an overview of radiation tx:
http://www.advancedradiationcenters.com/?p=igrtvs

jones7676 · 04-11-2009, 08:50 PM

Where I am currently treated they are not offering me any other treatment other than chemo and never have except when I got the first lung met. They said because I had a bone met they would not consider surgery on it etc.

Up until Nov. of 08 the chemo had held the single met and a small single spot in one node in control. I had in my lung in check. Even though I wasn't sure, where I went to in Chicago seemed to think this was right too.

In Nov. when I had that surgery they noticed another small met, but it was dead and they said they would keep an eye on it. I healed from the surgery, was preparing for the gamma and got my Pet Scan and then a MRI because the PET gave me a headache for 3 days.

The cancer has now gone wild. The old tumor and and node have grown very active and an additional spot is in the upper and a new one on the L side too and a node too. They waited about 1 1/2 months after surgery before restarting the last 3 doses I was supposed to receive and then be scanned.

When I went in for my appointment after the scanneing the only thing they offered was Ixempra and said it only had a 10% chance of working so I might want to consider just giving up as I had two brain tumors too. (apparently they had lost the note sent from brain surgeon saying I would be using Gamma Knife)

The next week they came up with the drug I have listed and cut out the Herceptin as it has never been given with it. I am on Tykerb instead. I have had one partial chemo (to see if allergic and one full treatment as they are only given once a month.

It doesn't feel like it is working as chemo has in the past, or perhaps it is that the new tumors are much more agressive. I just know it doesn't feel right. I am also having a lot of trouble with foot swelling and I am not recovering from the facial swelling from the Decadron like I should be. Swelling is a "side effect" of both drugs being used in current treatment. Despite the paperowrk I brought in They refuse to consider the Herceptin or do both mixed together + chemo drug.

So, I am trying to figure out where to go to explore options of better treatment and hoping it is out there. I am willing to travel where I need to (any where in the country), but I'm not sure where to go and feel I need to act soon - as wisely as possible. I wanted the brain mets taken care of before I went - and that is done.

Of course, I regret not doing this earlier in my treatment life! And that is why I need so much help.

Thank you Rich and Joan - I have some info printed etc. that I have saved, but the info is not real current and you have both given me info to get going on tonight.

Please feel free to keep info coming to me if you find out more. I am open about possible treatments which may make it more challenging......I also hope I hear from others as you have indicated is a possible.

THANKS so much for your quick response! Away I go to the web.

Bill · 04-11-2009, 10:17 PM

Barb, please know that you are in my thoughts and prayers. I wish I could help more.

Darlene Denise · 04-12-2009, 03:30 PM

Barb: Dr Eric Winer and Dr Nancy Lin, breast oncologists with Dana Farber Cancer Institute at Harvard in Boston are very experienced with breast cancer/brain mets and have done extensive trials with Tykerb. Dr Andrew Sideman at Sloan Kettering in New York would also be a good choice. And of course, MD Anderson is always top care. I understand several metsters see Dr Christofolli (not sure I got the spelling right).

I saw Dr Lin and found it relatively easy to make arrangements. I continue my care locally and she has been available to my onc as needed.

Best of luck as you work through the process of obtaining the care that you deserve.

Let me know if I can help with any additional info.

Darlene

vickie h · 04-12-2009, 04:19 PM

Barb,

I am so sorry to hear that you are having a difficult time finding enough info. Hang in there, sweet sister, there are more options, regardless of what you've been told. I would make an appt ASAP with MD Anderson and Dr. Cristofolli. I have heard only amazing things about him and in fact had an appt to meet with him about a month ago. I had to put off traveling to Texas due to financial stress and then my husband was laid off so it looks like Texas won't happen for a couple more months for me.
If you call MD Anderson, they will get you in quickly and are doing many studies there that are cutting edge. They also will send you a list of housing there (you need to be there for 6 to 11 days for consults and testing) which is extremely reasonable. If I could pick anywhere to go (besides Germany or other places in Europe) I would pick Anderson. They are considered to be one, if not the one, of the top Cancer hospitals in North America.
I am praying for you and sending you love and support today as always. I started back on Navelbine after being told that I could take Ixempra as a last ditch effort ( I had 3 treatments and quit as it did nothing but tear down my immune system even further) and so far things are going well. I realize that I am just patching holes in the dam but I'll take what I can get and I will go to anderson by June.
Take a deep breath and continue fighting...there are new studies and drugs coming available all the time. I wish I could be of more help. Let me know how you are doing and what you decide.
Much, much love to you, Vickie

Shobha · 04-13-2009, 08:58 AM

Dear Barb,

Holding you in my prayers. I too have heard a lot about MD. Anderson lately from my onc. Please do check it out as one of the options.

Sending lots of prayers and speedy healing your way.

Believe51 · 04-14-2009, 05:41 PM

Barb, you did not know I was there but I was peeking up on you with my cell phone. I wanted to reach out to you at that time,but did the next best thing. I spent some time during the day and thought only positive and healing thoughts for you My Friend. I prayed for your peace and to give you strength as you embark on these plans of attack. Even though I could not reply at the time of your original post, I always promised that you would never walk alone. I was right on the side of you Lovey! And Barb, although you say you do not feel that this treatment is working, I pray that you are wrong (smiling). Missed you so bad.>>Believe51