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Mdotsie
@mdotsie

Posts: 7
Joined: Jul 14, 2016

Uterine Cancer with brain metastasis

Posted by @mdotsie, Nov 17, 2016

I have had two metastatic brain tumors. Surgery for the second one was in January. Due to extreme vertigo, I have not been able to resume much of my normal life. My neurosurgeon says eventually this may correct itself but meanwhile I have to live with it. This is getting harder the longer it goes on. I would like to hear from others with similar issues and know how you are coping with it.

Liked by vsinn2000

REPLY

Welcome to Connect, Mdotsie! I’d like to connect you with fellow Connect members, so I’d like better understand they type of cancer you have.

Are the 2 brain tumors a result of cancer spreading (metastasizing) from a cancer elsewhere? If yes, which type of cancer?
Or
Do you have brain cancer that has metastasized elsewhere? If yes, which type of brain cancer?

@mdotsie, Trying to resume normal life with vertigo is challenging, I’m sure.

I wonder if it would be worth while to ask your Neurosurgeon about consulting in Physical Medicine and Rehabilitation? or ask if Vestibular rehabilitation is something that you would possibly benefit from?

As Colleen commented above, more information about your brain cancer will help us put you in touch with other members that have experienced similar situations.

@colleenyoung

Welcome to Connect, Mdotsie! I’d like to connect you with fellow Connect members, so I’d like better understand they type of cancer you have.

Are the 2 brain tumors a result of cancer spreading (metastasizing) from a cancer elsewhere? If yes, which type of cancer?
Or
Do you have brain cancer that has metastasized elsewhere? If yes, which type of brain cancer?

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I had uterine cancer in 2008 and the metastasis is from that. (I also previously had métastases in a lung, my bladder, my ribs)

@jamienolson

@mdotsie, Trying to resume normal life with vertigo is challenging, I’m sure.

I wonder if it would be worth while to ask your Neurosurgeon about consulting in Physical Medicine and Rehabilitation? or ask if Vestibular rehabilitation is something that you would possibly benefit from?

As Colleen commented above, more information about your brain cancer will help us put you in touch with other members that have experienced similar situations.

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I’ve talked with my neurosurgeon. The type of vertigo I have is not vestibular, It is directly a result of cerebellar cancer. I had radiation both before and after the actual brain surgery and she thinks the necrosis from that is causing irritation that leads to vertigo. As the scar tissue is being reabsorbed into my system the vertigo is improving very slowly. I’ve been to physical therapy to learn techniques for balance but the fact is that every day when I get up I am immediately feeling as if I’m on a ship in a storm at sea. It is exhausting to live with. It may continue to improve but right now I find myself unable to live a “normal” life and do the things I’m used to. My hope is that there are others with a similar experience to share my feelings with. Maybe I can learn something about coping with this that I haven’t thought of before.

@mdotsie I am going to connect you with memebers @claudia11 @msfrank04 @humminbird1963 and @overcomer11. Can any of you enlighten mdotsie as to how one can cope with vertigo symptoms?

Can you tell me if the physical therapy techniques taught were helpful throughout the day? Is it in the morning when you wake that you feel the worst?

@mdotsie, I send you warm wishes that you are able to find some relief or something that will help you cope with this debilitating effect from the necrosis.

@jamienolson

@mdotsie I am going to connect you with memebers @claudia11 @msfrank04 @humminbird1963 and @overcomer11. Can any of you enlighten mdotsie as to how one can cope with vertigo symptoms?

Can you tell me if the physical therapy techniques taught were helpful throughout the day? Is it in the morning when you wake that you feel the worst?

@mdotsie, I send you warm wishes that you are able to find some relief or something that will help you cope with this debilitating effect from the necrosis.

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Thanks. My vertigo symptoms start as soon as I get up and never let up all day. I can get around with a cane or a walker but I haven’t found a way to do much that requires even sitting up for very long. I’m an artist and I don’t have the stamina to deal with constant vertigo and produce artwork. I guess what I’m hoping to find is how to do any kind of work while coping with constant vertigo, if anyone has found a way to do that. I also have a vision problem where my eyes don’t”track” as the ophthalmologist put it, but I am learning to cope with that even though I read more slowly and really have to concentrate to avoid slipping into double vision. Most days, if I am too active, I get nausea and often vomit, just like seasickness. I’ve tried medications and bracelets and they are somewhat helpful but some days even brushing my teeth causes so much head movement that I have nausea from it. If anyone else has these symptoms and is coping better than I am, I would like to hear about how you do it.

Hi @mdotsie,
I just wanted to check in today to see how you are doing. How is the vertigo?

I thought you might want to connect with @kate123 who writes about her experience with uterine cancer here:
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don’t worry http://mayocl.in/2jVCoyu

My wife just had a endometrial tumor removed that me Metastasize to the brain. Looking for some direction and advice and referrals as this is extremely rare. I hope someone can help.

Welcome to Connect, @stayinghopeful. I’m glad you found us. I @kate123 and @mdotsie will return to share their personal experiences with endometrial cancer with you. You mention that you are looking for referrals. Do you mean referral for a second opinion? If yes, I’d like to invite @vsinn2000 to share about her experience at Mayo Clinic Cancer Center where she is being treated for a gynecological cancer.

StayingHopeful, will your wife be getting treatment for the brain metastasis? Has she been referred to a palliative care team?

She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has no cancer anywhere else. We are looking for some direction as this is very rare. 2nd opinion or any suggestions as to treatment is what we are after. Have heard her cancer might respond to keytruda but the chemo oncologist says chemo and keytruda are not shown to be beneficial at this time as there is not evidence of any active tumor right now.

@stayinghopeful

She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has no cancer anywhere else. We are looking for some direction as this is very rare. 2nd opinion or any suggestions as to treatment is what we are after. Have heard her cancer might respond to keytruda but the chemo oncologist says chemo and keytruda are not shown to be beneficial at this time as there is not evidence of any active tumor right now.

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I wish you and your wife all the best with stereotactic radiosurgery (SRS). A fellow Connect member, @mrser52, just completed SRS treatment for tentorial menigioma. While it was not for metastasis as in your wife’s situation, perhaps you’d like to ask Mrser52 questions about what SRS treatment was like and what you might expect tomorrow.

@stayinghopeful

She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has no cancer anywhere else. We are looking for some direction as this is very rare. 2nd opinion or any suggestions as to treatment is what we are after. Have heard her cancer might respond to keytruda but the chemo oncologist says chemo and keytruda are not shown to be beneficial at this time as there is not evidence of any active tumor right now.

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I will answer any question that you and your wife might have. Happy to help.

I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s treatment of your cancer? Thanks.

@stayinghopeful

I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s treatment of your cancer? Thanks.

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I have a tentorial meningioma brain tumor, I didn’t go to the Mayo Clinic I use this site for support. But I did have the SRS treatments. I had 5 of them here in Grand Rapids, MI During my SRS treatments during 3 of them I had to take Xanax. For this treatment they make a mask to form the shape of your face and the back of your head to use during these SRS treatments. My treatments lasted 15 minutes each. The making of the mask takes around 30 to 40 minutes. then the SRS treatments begin. I wish you well and good luck to you, If there is any thing else you would like to know please ask, I will try to answer your questions the best that I can.

@colleenyoung

Welcome to Connect, @stayinghopeful. I’m glad you found us. I @kate123 and @mdotsie will return to share their personal experiences with endometrial cancer with you. You mention that you are looking for referrals. Do you mean referral for a second opinion? If yes, I’d like to invite @vsinn2000 to share about her experience at Mayo Clinic Cancer Center where she is being treated for a gynecological cancer.

StayingHopeful, will your wife be getting treatment for the brain metastasis? Has she been referred to a palliative care team?

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Staying hopeful,
Welcome. If you you truly want a second chance, a second choice, and a second family of the the most supportive virtual friends, medical care beyond compare and a compassion you will see no where else then you are in the right place. My story was a nightmare. I had no where to turn for experienced care provider for my tumor. Please, please take time to read back through the threads of our crazy conversations. I will answer any and all questions you need to ask. Pm me and I will even answer your phone call. Your wife would be in the best hands, and my husband can tell you first hand that your wife will be in the right place. Please, don’t hesitate to reach out. It will be the best, most comforting choice you will make.
All my love and support to you both,
Vicky

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