Headache Update - 1245935

sherrys
Posts:212

I know this is in the wrong place but I'm so confused. I wanted to update on what's been happening. Apparently this tumor is a met from the lung. I had surgery july 6 but was Readmitted for infection a week ago and had 2 more surgeries. I think
I'm going home tomorrow and the plan was to follow up for cyber knife. Drs came in this evening and one threw out there that the cerebrum fluid was tested and we will know more tomorrow. Lepto???? I just cried. I was under the impression this was a single met I could fight. Now I don't know. I've never been so frightened of anything and what it would mean.

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Reply # - July 26, 2012, 07:33 PM

JimC
Posts: 2753

Sherry,

I'm so sorry that you are facing this, and I certainly hope that the surgeries have gone well and that the results of the fluid test are negative. From your previous posts, it doesn't sound as though you've been having any symptoms suggestive of lepto other than the headaches. And since the symptoms of leptomeningeal carcinomatosis tend to appear and worsen quickly, as they did for my wife, I wouldn't immediately jump to that conclusion just because your doctors are being thorough in their workup by testing the fluid.

I'll be thinking of you and hoping for good test results tomorrow.

JimC
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Reply # - July 26, 2012, 08:20 PM

Dr West
Posts: 4735

I agree with Jim. That they're looking into it doesn't mean that it's likely. And the pattern of leptomeningeal carcinomatosis is that of clinical worsening with many neurologic symptoms that defy another explanation.

-Dr. West

Reply # - July 27, 2012, 01:33 AM

certain spring
Posts: 762

Dear Sherry, what a horrible time you have been having. I have been wondering how you were getting on. You have all my sympathy and good wishes.
I have had quite a few experiences like this - doctors thinking aloud or commenting to colleagues and not realising what impact their words will have on the patient (ie me), leaving me scared witless. I really think that Jim and Dr West are right: they are just being thorough - and tactless, unfortunately.
Good luck going home. We're all thinking of you.

Reply # - July 27, 2012, 06:04 AM

catdander
Posts:

Hi Sherry, What a horrible ordeal. I agree with and second everything that's been said. My hopes are focused on an all clear.
Janine

Reply # - July 27, 2012, 09:21 AM

judys
Posts: 74

Sherry - I join with the others in wishing you the best. I've thought of you often over these last weeks. You've been through alot - hang in there!

Reply # - July 27, 2012, 12:21 PM

double trouble
Posts: 573

Hi Sherry. I understand how paralyzing fear can be, and I am so sorry that you are experiencing that feeling. I hope you are trying to focus in on what Jim and Dr. West are saying, and I also hope that they are right that the lack of symptoms is a good indicator that this isn't lepto. Any of us who have been here a while understand the implications. I wish I could take you for a walk along the ocean so we could both just let the beauty of the moment clear the fear away. You have many people sending positive energy in your direction. I will be among them, and will be looking for your updates.

With much love,
Debra

Reply # - July 28, 2012, 03:49 PM

laya d.
Posts: 714

Hi Sherry:

I'm so very happy to see your update and have been wondering how you had been fairing. Just to share a little bit of our experience here with you, we had a similar discussion with my Mom's brain surgeon (outside of my Mom's earshot) after her tumor was surgically removed from the cerebellum last Sept. I think that your surgeon is just being extra cautious here and doing testing on the fluid since he has a sampling of it.

Wishing you all the best. . .with hopes of a speedy recovery! And, please keep us posted.

Laya

Reply # - July 30, 2012, 01:15 PM

certain spring
Posts: 762

Sherry, just thinking of you today and hoping that things are a little bit better.

Reply # - August 13, 2012, 02:03 PM

mikem
Posts: 69

I am bumping this up just in case someone knows how to get a hold of Sherry. Has anyone heard anything? --mikem

Reply # - August 13, 2012, 02:55 PM

catdander
Posts:

I've sent an email to her. Hopefully we'll hear she is recouping and taking a break from us.

Reply # - August 21, 2012, 08:18 AM

catdander
Posts:

I received an email from Sherry last night. She had her 2nd cyberknife treatment yesterday. She admits she's had a very rough time as you can imagine. She wants everyone to know she misses them, loves them, and she will be back very soon!

She didn't mention lepto and I assume it hasn't been an issue since the initial scare of testing.

I think she can use a lot of our positive vibes.
Janine

Reply # - August 21, 2012, 11:07 AM

certain spring
Posts: 762

Great to have news. Thank you Janine for being the back-channel. Sending best wishes to Sherry - you have been missed!

Reply # - August 21, 2012, 06:46 PM

Dr West
Posts: 4735

Thanks so much for the update. We'll hope to hear more (and some good news) from her directly sometime soon.

-Dr. West

Reply # - August 22, 2012, 02:07 PM

laya d.
Posts: 714

Thank you so much for the update, janine. I almost didn't open up this thread today because I was so scared it was going to be bad news. Glad I did!

Yay Sherry. . .hope your gamma knife goes well. . .and feel better real soon.

Love, Laya

Reply # - September 3, 2012, 06:11 PM

sherrys
Posts: 212

Hello Everyone. I'm sorry it has taken me so long to come back to update. Thank you all for your thoughts, prayers and kind words. My last post was a little strange - I was still in the hospital and a little loopy from the drugs - so I will tell you the story now.

I had been having headaches since April; the onset coincided with my father moving in with us, so my PCP felt they were related to anxiety and prescribed an anti-anxiety medication. On July 2, I had a headache that would not stop nor respond to anything. By the next day it was gone. On July 4th it was back with a vengeance so my husband took me to the ER, assuming it was a migraine. They did a CT scan and saw the tumor, so they transferred me by ambulance to Presbyterian Hospital in Pittsburgh. There it was determined that the tumor was approximately the size of a golf ball and was located in the cerebellum. It was first assumed that it was a met from the breast cancer since that had been the most recent.

After surgery, I guess I had some problems with breathing so I was kept out in ICU for 3 days. The surgery was on a Friday and when I woke up Monday, I thought it was still Friday. I initially felt pretty good but started developing a headache again. It was assumed that the headache was from swelling in the area of the surgery, so I was sent home and told I would have to "ride out" the pain. After going home, the pain increased daily to where I literally could not move without crying. My husband had to do everything for me - including taking me to the bathroom and helping me sit, etc. By Friday, I was literally screaming everytime I moved, so we called an ambulance and went back to the ER. They did at CT scan, gave me tons of pain meds and determined it was still just swelling. They sent me home. I spent the next week completely doped up from the pain killers and crying from the pain. I was scheduled to get the staples out from the surgery on Thursday. I don't remember at all, but my husband said we waited for over 2 hours for me to be seen, all the while I was sitting in a wheelchair with my pillow and crying due to my headache.

Once I was actually seen, they quickly realized that my wound was infected, so I was readmitted to have it irrigated. Two days later, my pillow was wet and bloody, so they had to irrigate it again. It turns out that I contracted an infection in the OR and was put on a 6 week course of IV antibiotics. I came home feeling pretty well, then I twisted by back and was unable to move for 2 days, then the following weekend I got the flu. It’s been a rough few months!

I am happy to say that I have completed 3 cyber knife treatments and I will be starting on Tarceva this week. I hope that I have as good of luck with it as my dad did. Another plus is that I got to see Dr. Socinski and we had a very nice talk about GRACE. As much as I liked my other oncologist, I am going to switch to Dr. Socinski because both my husband and I really liked his personality.

I also was selected to go the Lung Cancer Advocacy Summit in Nashville, TN, on September 13. I am very much looking forward to it!

Reply # - September 3, 2012, 06:44 PM

neilb
Posts: 84

Hi, Sherry! It's good to hear from you. It sounds like you've been through quite an ordeal. I continue to have great respect for the care I'm getting from Dr. Socinski (and his nurse Terri Collins), so I'm glad you've found your way to him. I hope you continue to recover well and have a long run on Tarceva!--Neil

Reply # - September 3, 2012, 08:13 PM

Dr West
Posts: 4735

I'm so sorry to hear of all you've been through, though it's great that you're doing better now. And Dr. Socinski is among the greatest luminaries in the lung cancer field, as well as a terrific communicator, so I certainly think your decision to work with him is a great one.

Please keep us informed.

-Dr. West

Reply # - September 3, 2012, 09:27 PM

laya d.
Posts: 714

HI SHERRRRYYYYYY!!!!

I'm so happy to hear from you. . .and glad that you have come out OK after all that you've been through. What a CRAZY ordeal!!! Again, I'm so very sorry about the brain met. . .but glad that it has been dealt with. I hope you are regaining your strength and getting back in the grove of things. Here's to a very very very very very long response to Tarceva and praying that your brain met was nothing more than a solitary precocious met that now has been done away with once and for all. . .

All my love,
Laya

Reply # - September 3, 2012, 09:32 PM

bh
Posts: 66

Sherry, so glad you are doing well and I second Laya's wish that you have a long, long response to Tarceva.

Reply # - September 4, 2012, 01:23 AM

certain spring
Posts: 762

So glad to hear from you, Sherry. But I am so sorry for everything you have been through. You poor thing. Those headaches sound terrible.
Very impressed you can take a trip to Nashville after all that has happened!

Reply # - September 4, 2012, 08:19 AM

double trouble
Posts: 573

Hi Sherry and thanks for the update. Wow, you've been through the mill. So glad you've come out the other side intact, and hoping for a great response for you.
Debra

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