Oh Lucky Me!!! NOT

Hi everyone, well NED lasted all of about 5 minutes, I got the result of Biopsy today from Doc and I did get to see my Onc, no thanks to the ineffective female making appointments, it didn't come out in the mail so my Doc rang Boris direct and I got to see him. No surprise but weird, clinical observation is inflammatory, bipopsy says it is metesised from the other breast, it is like skin mets but deeper. Any way I am glad I took the initiative of taking Xeloda which was in my cupboard, 7 days ago because that way I was protected while I had the biopsy because I tend to spread quickly after them, and I have noticed that my neck lump has shrunk a little, could be wishfull thinking but that was what convinced me something was wrong. So after asking what I wanted as I have tried every drug possible, not true of course we know better, so I told him what I thought and asked his opinion on surgery and not for it, worried it would just reappear on site so decided on Xeldoa, fancy that, 500mg a day during the full course of 6 weeks daily radical radiation, it pays to stand out in a crowd because I am seeing the Rads Onc on Tuesday and will commence the following week, I asked about carboplatin and he said he had no data on using Radiation, Herceptin,Xeloda and carboplatin so if I find any in the meantime to get it to him, so family if you find anything please let me know, even our silent members, you never know what you find when you aren't looking and think it doesn't relate to your situation, I have to fight on regardless.

Love & Hugs Lyn

Hi Lyn: I was sorry to read your news....seems like we just can't get a break sometimes. You sound very knowledgable about treatments. Knowledge is definately power. I hope there are others "out there" who can give you some of the information you are looking for. As for me...you are in my thoughts and prayers. Hang in there! Take Care, Linda in Calif.

Oh Lyn - I am so sorry to hear this new development. I guess I will have to pray louder. I wish I had some helpful information to give you on treatmemts. I wish I had a cure. The best I can do is keep you in my prayers. If I come across something, I will e-mail you direct.
good luck and God bless - Maryann

Lyn,

I'm sure that was not the news you wanted to hear; wish I had something I could add to what you already know. It sounds like you have educated yourself very well on the subject and are probably your own best advocate. Take strength in your knowledge and hope this next round of treatments will take you back to the land of NED for a nice long stretch.

Peggy in Orlando

Lyn,
People say I'm a fighter, but honey you've got me beat! This damn disease is so hard to comprehend. And I'm so sorry you've been given another challenge. But you will rise to the occasion and come to visit the State in a few months. Come to Colorado and I'll give you the grand tour.

Love and light,

Lisa

Are we going to have to come over there???? Seems like they're not taking very good care of you!!!!

I am so sorry the fight for you rarely ends. We are depending on your spirit to keep you moving forward though. It gives us courage and perseverance. We get that from one another...

You are in my prayers. Hugs, Lola

[Lolly]

Lyn, I was hoping it wasn't what you suspected, but as usual you are one step ahead of things by taking charge and taking Xeloda while waiting for the biopsy results to come back. I'll definitely be on the lookout for some information on using the triplet combo while having radiation, and will e-mail you directly if I find anything useful...hang in there Lady, we're all behind you 100%!

Love, Lolly

I really feel for you.

I have failed four rounds of chemo, and my doctor is considering trying Xeloda -- my breasts are a mess!!! my right breast is an open sore.
So dont feel too bad.
My doctor wants me to try to get into clinical trials, but I really don't qualify for anything right now because of brain mets, and they do not want to take me off Heceptin.

I am so sorry!! I will pray for you!!

Good luck!!!

Michele in MD

Lyn, Sorry you have to deal with this so soon. I am on carboplatin 1 x every 3 wks/gemzar wkly for 2 wks, then a wk off/ & now wkly herceptin. I have been having trouble with low platelets & RBC,s (nurse gave me carbo 2 wks in a row at a 1 x 3 wk dosage by accident), haven't been able to get platelets up since.
Have you tried Gemzar? Can also lower your counts. I know you will keep trying things until something works. Positive thoughts, V

Hi Velva and other forum readers, no I haven't tried Gemzar YET!! That was what I couldn't undersatand when my Onc said I had tried everything. there are a few left and of course he told the rads onc that there were some more I had found in America that aren't FDA here yet. I have to stop taking the Xeloda now and restart just 1 x 500mg a day for the duration of the rads, he says that is more toxic? The strangest thing is today my breast doesn't look as inflamed so I hope my 1 week dose is going to be enough to carry me over until I have the rads, still don't quite understand that one, but after the negative responses I am not convinced I haven't had this for a couple of years, about 3 years back it went weird and I was told it was just oedema of the nipple, then mammo's and scans said nothing and even biopsy 3 months ago said nothing and now this, after only having had mammo and scan 6 months ago, I believe the Herceptin has altered the DNA of this one which is also strongly +3 and again negative oestrogen and progestrone, biopsy on neck on this side also said not same but similar cells to the other side and new path report says that this is mets from original site and not secondary. My onc said that he has seen this before after I said it is just like deep skin mets, so I said what is the outcome for me and he said I honestly don't know but there is no organ bone or life treatening mets involved. I also read that when the paths are done if they want them to grow they reduce oxygen and when they want them to reduce they increase oxygen and that is why the only organ that doesn't get cancer is the heart, makes sense to me so it looks like I have to get more oxygen in me, how I don't know.

Love & Hugs Lyn

[StephN]

Dear Lyn -
Well - your med onc is once again listening to you be your own best advocate! And smart to jump the gun on the Xeloda you had on hand. At least it was something you could do that would be better than twiddling your fingers just waiting!

Like my med onc says - there is rarely a new primary in breast cancer - usually a met eventually.

About getting more oxygen into your system. Try some deep breathing exercises, they are actually relaxing as well once you learn them. Fill up the whole abdoman and hold - then let out slowly.

Do you take Coenzyme Q10? I usualy take 100mg per day for years now, but have doubled to 200mg now that I am trying to absorb a couple of dead brain mets from my cranium. This is supposed to be a good oxygen carrier.

Hope the radiation does not make you too tired - at least you have nicer weather then winter here in the misty woods!

Lyn

I will contact Sandy H who had been Dxed w/IBC a few years ago. She traveled with us to the San Antonio Symposium and made some contacts.
I'll call her. She lives in Maine. i'll give her your e-address.

Hugs Christine

Lyn: Christine called me and I am sending you an e-mail if it doesn't go through I may need you to send me you address as it is a long one and I may not put in in right. I am sorry not to have responded to your posting and its because I have been away twice in the past week. My husband has been down with cellulitis in his leg for 8 days and I have had to take on some responsibilities that he hasn't been able to do. I have been checking the board and did see your post and made a note of replying as soon as I had a minute. However, Christine did call me and that was good as it prompted me to do it now!! Hugs, Sandy

Thanks Christine and Sandy, I was kind of hoping I too had cellulitis but no such luck but it was worth a try.

Love & Hugs Lyn

Hi Lyn

So sorry to read about the latest developments.

I'm afraid I can't offer much in theway of helpful information but just want to say, hang in there and stay in touch.

Cheers
Pauline