Cancer of the meninges

Husband Bob was told cancer has gone to the meninges. Was on Taxol. That has stopped. In 2 weeks time he has gone from walking to wheelchair.
Not a candidate for radiation as he has been radiated in that area. Any input is appreciated. Has fought this well for 2 and half years.

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I'm sorry to hear that. Some oncs have used Pulsed Tarceva. They give 4 - 150 mg pills once every 4 days. Has your onc given you any suggestions for treatment? The actress Valerie Harper has Lepto and what ever treatment she is getting seems to be helping. I don't know if you could search on the internet and find out what her treatment is.

Becky

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More Effective Treatment for Leptomeningeal Carcinomatous in Lung Cancer?

http://cancerfocus.org/forum/showthread.php?t=3066

Greg

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Thanks to both of your recommendations. We see the oncologist on Monday and will discuss. Appreciate your input.

Josephine

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Leptomeningeal disease first showed up on my MRI in Sept '12. Thankfully I still have no symtoms. I understand this is rare. I am ALK + so was on LDK-378 clinical trial and that seemed to control it or at least impede progression. Now on Alimta. The options I have discussed so far with my oncologists are Whole Brain Radiation and Interthecal chemo. The latter is also called an "Omaya Patch". From what I understand they peal up a bit of your scalp and insert a patch with chemo that releases the drug directly into your brain.

My oncs have not been optimistic about this aspect of my disease and I know it can progress fast which is sounds like it has in your husband's case. These options may or may not be appropriate but want to share what I know. I also pray a lot and will do so for you. Wishing you all the best of luck.

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Again, thanks for your sharing your experience. Prayer is even more appreciated.

Josephine

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Hello all,

Bob is going back into hospital and will be seen by a neurosurgeon. They are going to look at the tumor on the spine(C-5). The doctor is concerned as to how all this happened so quickly. Rehab will follow.

Josephine

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Josephine

Look at the tumor on the spine (C-5)? That's how my wife developed leptomeningeal carcinomatous, an unevaluated 1cm rounded focus of abnormal signal intensity in the L-3 vertabral body, by the same rad onc who fried her with whole brain radiation.

My best to your husband!

Greg

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Greg,
Thanks for sharing your journey. We will update any new findings. One day at a time.

Josephine

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My Husband
And was diagnosed on Thurs. In hospice on Fr. And passed on Monday. You it seems have a chance to try some treatments. My opinion is Try anything they offer.Nothing to lose, wish we would have had a chance to try anything.
Best wishes
HNW

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I am so sorry you got this devastating diagnosis.

My husband has progression inside the spinal column, and this will more than likely be our future as well.

From my own research, and with help from people here, the only treatment that looks like it has a chance (be it a small one) is the pulsed Tarceva. Is your husband egfr positive?

Putting the chemo directly into the fluid via the Omaya has not been successful in lung cancer form what I have read. Lung cancer acts differently in the spinal fluid, laying down like tree bark. The chemo that they use for this is also harsh, although the procedure and treatment is not painful.

Here is a recent question asked on GRACE which addresses this horrific complication:

http://cancergrace.org/topic/adenocarsinoma-stage-4-egfr-progresses-to-lmd- running-out-of-options

Greg,

What kind of tumor did your wife have? My husband's are intradural extramedullary which everyone, from the neurosurgeon to the onc thought had to be a benign neurofibroma. It came back adeno after Stanford pathology took a look.

God bless us all.

Holly

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Holly

My wife originally had stage IV ovarian cancer in 1972. She went 24 years before having any recurrence (that's right, 24 years on stage IV cancer). It was in 1996 that she developed a metastatic transdiaphragmatic tumor from the original cancer with attachment to the lung, liver and other midline structures of the chest. Parts of those structures were surgically resected at Fox Chase Cancer Center (when they had surgeons).

Although the thoracic surgical oncologist stated that she was 100% successful and did not feel that further treatment with chemotherapy was indicated, we were coerced by oncologists at our Reading Hospital to receive the infamous Taxol plus Carboplatin, seven months after having that metastatic tumor surgically excised. Thanks to Taxol, eleven months later, besides developing a solitary brain metastasis, she developed a lesion in the L-3 area of her spine, which was unevaluated by the radiation oncologist.

I have an understanding of what you are talking about. One neuroradiologist at Reading thought her brain tumor was a meningioma. Another thought it was a primary neoplastic lesion. That's why I yanked her out of there and took her to Penn State Hershey Medical Center where they properly diagnosed a metastatic papillary adenocarcinoma with extensive necrosis from the ovary. After her brain surgery, they suggested further evaluation of a possible herniated disc or another lesion on her spine. Of course, Reading failed to further evaluate the lesion.

Greg

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Thank you, Greg.

Twenty-four years at stage lV is remarkable!

Thank you for the history on your dear wife. I, too, have been shocked at the ineptness of the medical field with these life and death situations.

We went four months with the T12 tumor symptoms. It was only when my husband had trouble walking that something was done. You would think with a known cancer that the doctors would do a little checking. We were brushed off by the onc who sent him to his pcp, who also brushed him off.

Thanks for all you do here.

Holly

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Dear Josephine,

Is there anything new? What did the neurosurgeon have to say?

You are in my prayers.

And HNW,

I am so sorry that you lost your husband so very quickly.

Holly

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Holly,

Actually the only bit of news we have from the intern at the hospital is that the tumor that was a concern is not compressing on the spine. A physical therapist came and worked with him to see his strengths and weaknesses. He has limited use of his legs, but good upper body movement. We do not have any sense of direction with what is up next. Bob is doing very well with it all, even though, he'd love to be walking. All said, we feel like we are in God's hands with good people around us. Life is full of surprises. Thanks for your concern. Stay in touch and we will do likewise.

Josephine

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Dear members,

This morning we heard from Bob's oncologist and he feels that there is no treatment or clinical trial that he would benefit from at this time. He will be going from the hospital to a rehab facility. Bob is doing well with the news. We will take this one day at a time. The strength of all the prayers will see us through. Know you are in our prayers as well.

Josephine

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My prayers and the spirit of Ann are with you and yours.

Greg

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Jos,
Just heard about this from Millicent. As Holly and Greg have suggested, I would strongly encourage you to discuss Tarceva with Bobs' docs...today.

G

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