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Hello All,

So, my dad and I went to NEMC to get the medical records. Little did I know that it takes approx a week to put together. The lady that helped us said that it's usually done sooner than that though. I guess I'll have to rely on NEMC to mail it over after all. I suggested that they fax it but they prefer to mail it.

Fortunately we did get all the CT scans burned for us. It was about an hour and a half wait due to the computer malfunctioning. Ever have the feeling that if something could go wrong it will? Lately I feel like I've had the worst of luck with everything.

My parents were all worried about whether or not we needed a PCP referral for BI. I called my father's insurance to double check (Tufts PPO) and luckily we don't. The doctor only needs to be in network with Tufts.

~Grace - Do you know if the thoracic onc is affiliated with Tufts by any chance? Also, what kind of treatment has your husband had?

Toodles,

Shirley

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Hi Shirley.

WOW.. well I guess the medical profession is like any other, bound by and with, red tape! How infuriating though.

Glad to hear the insurance part worked out well though!

Wondering if you asked to have copies of all your dads records made for YOURSELVES as well for any future issues that arise? Just a thought....

Glad that things went somewhat smoothly!

Chris

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Hi All,

I contacted Beth Israel last night since they have a clinical trial with HKI-272. The lady called me back last night and unfortunately she said that she doesn't think that there are any trials right now accepting people with brain mets. There might be one opening up in the fall though - just maybe.

The brain mets are certainly making things so complicated and researching it online is so grim.

Double crossing my fingers for Cyberknife to be an option.

Last night I was trying to read people's profiles to see who currently has NED now after brain mets. I don't think I found any, but then again I wasn't looking for a long time.

All the tumors in the world need to just shrivel up and die.

Thanks for reading my random ramblings before I get ready for work, ugh.

Praying,

Shirley

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Hi All,

My mother told me that my father wasn't feeling well today so he was in bed for a little bit. She said that he was kind of dizzy and his arms and legs were a little tired.

When I got home from work I talked to him and he told me that he felt a lot better after napping and that his fingers were kind of numb.

He also decided to take 150 mg. of Tarceva tomorrow instead of 300 mg. He thinks that the side effects are too much for right now. I hope it is the Tarceva that's making him feel this way.

MRI on Tuesday. I don't think he knows that he has it though and I don't want to worry him with the thought of another test. He does know that he has a doctors apt with the neurosurgeon that day though. Do people typically have separate MRI and CT scans? He already had a CT scan of the head. What's the difference? What's the benefit of doing both?

Please pray that it's only the one tumor that they saw on the CT scan. The fellow said it was very small - 1 cm. Is that really small?

Ugh ugh ugh.

I'll be offline until Tuesday.

Going home for Father's Day and such.

Praying,

Shirley

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Shirley,

Sorry to hear about your dad. Considentially my husband is going to have an MRI of the Brain and CT of his Chest both on Thurs. So you can go thru both on the same day. My husband is a pro at this now. In terms of the tests themselves.

The CT is more of an "open machine", vs. MRI which you are in a tube...if your dad is clustrophobic if he can should ask the dr. for a sedative like valuim, I've had a few MRI's myself and drugs do help! In terms of the difference, MRI's are the more preferred test for the Brain, they can see more effected areas, size of any lesions. I believe that with the brain it is the preferred test, but if your dad only has one tumor thats good..because if he needs to go for radiation, it won't be so bad, at least it wasn't for my husband, he had 17 mets in his brain. That's why he's going thurs. for the mri because it has been a month since radiation ended, and we need to see if it worked, of course there are other options, but we take it one step at a time.

I'll say my prayers for your dad...

Grace

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Shirley and Grace,

Just letting you know I have you all in my prayers for great results as well as strength and peace of mind.

Grace I hope things are a bit better for you now.

Shirley I hope your dad is doing better with the tingling. I seem to recall someone else commenting about Tarceva causing tingling, but I may be mistaken. I read so many posts as well as all the articles etc that I could well have the Tarceva mixed up with something else.....

Anyway, I needed to let you both know I am thinking of you...

Love and prayers,

Chris

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Hi Chris,

I hope you are doing well..yes it was a rough weekend but back to the old bump and grind!..It's interesting your mentioning to Shirley about the tingling, because my husband has that too, the neuropathy it's more then likely caused by all these chemicals/chemo/drugs they're taking.

I did read a tip, i don't know if it would help Shirley's dad, but if his tingling is in his feet, take a cotton ball and rub it on the bottom of his feet to get the sensation back....like i said don't know if it would work, but worth a shot...

I'm hoping to chat tomorrow nite, hope you get a chance too....thank you for all your thoughts and prayers.....Please KEEP COOL!!!!...ahhh I hate the hot weather....

Grace

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Hi Grace,

I am very glad to hear you are doing better. I, as well as everyone else on here can understand completely what you are going through. It is normal, it sucks but it is normal. :(

Brad did not have Tarceva to my knowledge but I had been reading about that as well as a zillion other options out there and recall reading something about tingling. I have to see if I saved that particular thing or not. I think as you say, the combination of all those horrible drugs in the system fighting an even more horrible disease wreak havoc on a person. And not everyone has the same reaction so.. God we need a cure yesterday!!!!!

As for the treatment regime Brad did have, I am not really sure what the drugs were. I do know he was on massive doses daily for a while. Other than the nausea which was never completely aleviated with the anti~pukes as he called them, he was just completely fatigued 24/7 but continued to work most days. I did notice the chemo~brain syndrome from time to time as he would be forgetful which was never an issue with him before the cancer. We found humour in that, though, which was, along with nothing but a positive attitude was what he needed and all he ever asked for.

Anyway, just very glad to know you are doing better. I have you and your family in my prayers every day...

Hugs and loads of positive thoughts my dear!

Love

Chris

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Hey All,

My father met the neurosurgeon yesterday. Not too too bad considering there are options. I'm hanging on to whatever thread of hope there is. He also had an MRI too and they had the results. The first onc that looked at it said that there is one tumor that's 1 cm. Then when the other onc looked at it, he found 2 more. :( He kept on saying that it's really small. The two small ones are about the size of a grain of rice.

The treatment will be gammaknife done next Thursday. It's supposed to be a one time procedure. Before the other onc found the other two lesions they were going to opt for surgery first then gammaknife.

I guess there's something going on in the pancreas area also. The docs aren't too sure they said it's either the pancreas or the lymph nodes.

They had also suggested my father cont taking the 300 mg of Tarceva. He's been breaking out and there were some increased side effects but the docs said that if there are side effects then it must mean that it's working.

My mother told me that my father had a fever earlier but it has reduced since he took Tylenol. I hope that it's not an indication that the cancer is spreading again since a consistent fever is an indicationf or him that the cancer is growing :cry:

Anyone else experienced or have known of anyone who has experienced fever with increased dosage of Tarceva?

Praying and Hoping,

Shirley

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Hey Shirley,

I sent you an email this morning about the Tarceva rash. Not sure if your email is working today or not.

Options are hope and hope is such a positive thing to have.

Will keep you and your family and Steve's too, in my prayers. Thursday will be a success!

Hugs

Chris

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Hi All,

I need to go with my father to a doctor's apt tomorrow morning. I think they're doing blood work and then discussing treatment. At least I hope they will be.

My father has been having fevers that hover around 100 degrees for the last couple days now. Tylenol has been able to break it. I have to say that I am very worried about the fevers. It has always been an indication that the cancer is progressing. :cry:

He's decreased his dosage of Tarceva to 150 mg and does not seem open to increasing it. Hopefully I'll be able to talk him into it tomorrow. Yuck.

His gammaknife was rescheduled for this Friday at 6 am. What an unholy hour. I'm going to be taking him. I hope everything goes well and that it is effective.

My boyfriend keeps on telling me to stay positive. But it's so much easier said than done.

Wishing for the best,

Shirley

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Hey Shirley

I am sorry to hear the fever is still an issue. Hopefully it is nothing at all related to the cancer.

YIKES, that gammaknife appt is way early, but hopefully it will go quick and smoothly and do what it needs to.

Steve is right, stay positive, it does help. I know it is not easy, trust me, but it is worth the effort.

Sending hugs and prayers and my own dose of positive thoughts to ya,

Love,

Chris

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Hi There,

We're seeing Dr. Therese Mulvey. Do you have experience with them yourselves? Do you have a oncologist that you would recommend, if so I can see if I can get an apt with them instead. Luckily, as far as insurance the new patient coordinator told me that everyone is in network with Tufts.

Thanks again,

Shirley

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Shirley,

I haven't had any experience with Commonwealth Personally, but like I said my brother, the doc, refers many of his patients who have or may have cancer there. He tells me they are one of the biggest oncology/hematology groups in MA. He likes them on a professional level. So I wish you much luck and hope you get better answers and treatment than before.

Grace

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