Please help me .. very worried

[huckchef]

Paige,
I just wanted to send you some positive vibes!!!! Stay Strong!
Thoughts and prayers,
Brian

[Karen]

Paige,
You're on the right track with your brother. You have so much to deal with with your brother, mom, mon-in-law and yourself! Your brother will be in great hands with Einhorn. Please take some time for yourself....you need healing too after your double mastectomy. I so hope that 2007 is a good year for you and your family!

[Jilleighn]

Paige!
I was just looking over your post and did not get to read the whole thing. I will go back and do that after I make this post! Night Sweats and Bleo are completely normal. On days my husband took Bleo you could be sure we woke up in the middle of the night for him to take a shower and for me to change the bed sheets because he would sweat so much. Night sweats and fevers are the most common side effects.

[Concerned Sis]

Thank you all for the wonderful, helpful advice. I passed it on to my brother and he's relieved that Bleo does cause night sweats and that he may always feel the tumor until it's removed. I also passed on to him some info I collected here regarding a place to stay when he's in Indiana.

Here is what I found out regarding the location of his tumor. He emailed me as follows when I asked him to clarify : "The muscle is the iliopsoas muscle. It is in the lower back and is used to lift your knee and also maintains proper back support like when you are sitting in a chair without a back or on a stool. They are not confident it is in the muscle or if I just have an unusual lymph node pattern back there. Hopefully, Einhorn will know what the deal is with that."

I thought the muscle started with an "M" but evidently I was mistaken. Can the average medical staff really not know where this tumor is located? Am I being too critical of this facility or do they sound like a bunch of idiots? If you don't know, send the scan to someone who DOES!

Anyway, thank you again. I feel so much better (and Scott does too) about his future prognosis and recovery. His next scan is Jan 5 and his appt with Dr. Einhorn is January 9th. I'll keep you all posted as to the developments as they arise.

Happy New Year!

All the best,
Paige

[dadmo]

Can you be too critical, you bet. Should you ever stop questioning what they do? No. You must be your own advocate. (in this case your brothers)

[Concerned Sis]

Thanks for the input. Dr. Einhorn was consulting on my brothers case from the get-go. The problem with consulting in our case is that the scans were not read right by his local MD's. Dr. Einhorn wasn't able to review the scans himself and treated my brother under the assumption that there wasn't a huge mass present - and there was. So, it did us no good. He may as well have been treated at a local doc in the box for all the good it did us. I doubt Scott will move to Indiana but I am hoping that somehow Dr. Einhorn will be able to physically review all of his tests & results so he can be treated properly this time around. We can't afford another huge f**k up.

[Concerned Sis]

Just a quick note to let you know that Scott (my brother) had his scan today. He has completed two rounds of BEP so far and his lymph nodes have returned to normal and the tumor has shrunk to half the size it was!! We are so thankful that the chemo seems to be working wonderfully. He has his appt with Dr. Einhorn on the 9th. I will let you know what he says. Thanks for caring and good luck to everyone who is currently taking radiation and/or chemo.

[Scott]

It's great to hear treatment is going well.

[ivannabanana]

Thats brill new for your brother and your family... Im so pleased for you...i hope thys continues ... Lets hope 2007 can discover a cure for all cancers... Best of luck wyth rest of the way.... Bless Yvonne

[huckchef]

Thats good news. Stay positive and strong!
Praying for the best,
Brian

[Fed]

This is great news! Keep up the good work!

[Concerned Sis]

Scott saw Dr. E yesterday - what a brilliant, nice man. For anyone who can make the trip for a second opinion, he's the man to see. Please consider doing so. Scott really liked him.

He will only have one more round of BEP (he's had two). Dr. E noted some crackling in his lungs and if that continues he will forego the final round of Bleo. He is tweaking the current treatment plan to better accommodate my brother. He will take over his care long distance from this point forward.

Although he didn't want to admit it, he did state that the tumor should not have been missed - but it's better to be pissed at the cancer instead of your medical team (I disagree but it's the risk you run when you allow yourself to be treated by a clinic that doesn't specialize in TC).

There will be no surgery to remove residual tumor and Dr. E states that Scott's cure rate should be at 99.99.9% Can't get much better than that.

Looking forward to 2007 and will continue to check the boards for updates on those stories I've been following for the past two months.

Cheers,
Paige

[ivannabanana]

Paige

That is just brill news ... im so pleased for your brother and of course all your family.... Lets face it no one knows what is round the corner for them so live your life a day at a time.... well done... bless and enjoy your lives now, Yvonne

[Fed]

That is awesome news, Paige. Best to your brother and his caretakers,

[Scott]

That's great, Paige! The light at the end of the tunnel is shining bright.