Brain Mets Sisters
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hugs to you Carolben. I am so happy you took control of your life. May you have many more months of swimming and enjoying your family.
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(((((Carolben)))), sending you large but gentle hugs, and seeing your pain management continuing to be wonderfully effective. The fact that you're swimming is awesome! I sooooooo appreciate your sharing your strong spirit with us on this trail we walk together.
Seeing you at peace and pain free.
xxoxoxoxoxoxoxo
Calico
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I'm having my fourth gamma knife treatment for brain mets tomorrow. Praying it's my last but every other month when I see my neuro a new spot (or 3) has popped up. This time it's only one. He thinks it isn't new spread but slow growing pieces that fell off the large tumor I had removed in October. My former chemo may have slower the growth. Three rounds of Taxol; stopped working sometime during third round. Now onto Xeloda.
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Thanks ladies for your responses. I saw my optometrist today. I gave her my run down version of cancer treatments over the last couple of years. She said that vision can regress after laser surgery and that's what happened to me. She said that my eyes look healthy and that I needed a pair of mild prescription glasses. I want to give it a go with a pair of glasses for the next couple of weeks and if blurry vision still continues to be a problem, I will request a brain scan. Cross my fingers that glasses would do the trick. Hugs to all.
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Carolben,
You have been and will continue to be an inspiration to me and I'm glad you are able to enjoy life off of chemo. Spending time with your sisters and swimming sound fabulous! This cancer thing is so unpredictable. I wouldn't count on only having 6-7 months. I'm sure your body will get stronger now that you are no longer poisoning it. By staying active, you will be able to live longer and better. Thank you for continuing to post. We are all sending positive energy your way!
Hugs, Susan
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Hugs to you, Carolben! It's so good to hear from you!!!
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Hugs to you, Carolben! Thanks for the update, hoping you are feeling peaceful and well. I had a 2 month break from chemo and, in spite of progression, I honestly would say I haven't felt so great in years. Hope you enjoy this time, it is heartbreaking that you've gone through so much, but thank you for posting as it is inspiring.
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Hello Carolben,
I have just been reading your posts and just wanted to say that you are often in my thoughts and I have great admiration for your amazing strength and courage in all of this. I am so glad that you feel better away from chemotherapy and that your pain is being controlled. I am thrilled for you that you can continue to swim, as I know how much you love that. I can see from the posts that you are an inspiration to the other women on this thread.
Sending you all my love.
Sylvia xxxx
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Hi all, too many to name by name, well, that's my excuse - actually my memory is so bad that I totally forget huge chunks. Like this morning I swore to my sister she hadn't even given me something and when we looked, there it was (I should know by now; she's never wrong).
Hansaim, I do hope that the glasses will do the trick and it's just normal deterioration of your vision. My onc told me ages ago that chemo can cause your vision to get worse. If you're still worried, have that brain scan, or mri.
Brenda, hi, how are you doing. And Sylvia hello! I was going to message you on the other thread, but you got in first. So nice to hear from you - my best friend from school has just been diagnosed with 3-, no lymph involvement, caught early etc - will write you about her.
Susan you gave me the courage also to say " no more chemo", I've not been feeling too bright the last few days, but I'm feeling so much better off chemo and rads - in Dec I thought I'd never feel better, and it's such a treat. They do keep me pilled up, for which I thank Hospice, now I have headaches and pain around my ribs (really don't know if it's ribs or lungs), but they do keep me out of pain, without making me woozy. But I thank all of you here for your amazing strength and inspiration to come this far.
Can't see very well now, more tomorrow earlier, when I'm fresher!
Love to all
Xxx
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Hello Carolben
I just wanted to say that my thoughts are with you and that I am so glad that you are feeling better now you are off chemo. I think we all know the devastating effects that these drugs have on us.
You became so special to me on my thread and I got so much out of your posts.
I was so sorry to hear that your friend has been diagnosed with triple negative and I do hope she will get through this journey. She is welcome to come on my thread where she will be given support.
I am so glad that you have great support on this thread.
Sending you all my love and affection.
Sylvia xxxx
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Carol,
I'm doing okay, thanks for asking. I'm back on the Abraxane, which got rid of my cancer pain (left hemisphere of my chest). The major s/e is fatigue. I probably have 2 good days in one week, and for that I'm thankful.
I just wanted to say that I'm glad your pain is being controlled and that you are able to do some of the things you love to do! How is your son doing? You have not talked about him in a while.
Love,
Brenda
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Hi. So is brain mets less common? I know my oncologist thought initially that I had an isolated injury to my brain prior to all of the other tests coming in after the initial seizure. I had to do WBR since she said I didn't qualify for the Gamma Knife. I finished in March but have been exhausted since. Is this normal? I came off steroids, when back on them again, and am now working on weaning off again. I appreciate any advice.
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I had WBR last summer. I was told 2 months after would be the low point and that was about right. So hang in there, you should reach the turning point soon. I hated steroids so came off fairly early - but you need doctor's advice on that. My only advice is be kind to yourself - when you're tired, take a nap
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Jule:
I had WBR October 2014 to treat 13 brain tumors. I remained on Herceptin and Tykerb until March 2015. The doctor changed my medication in March to Kadcyla and took me off the Tykerb (lots of side effects from the Tykerb). I began to feel better after I stopped the Tykerb. Unfortunately I still have severe fatigue from the WBR. I am grateful to have 2-3 days of increased energy in between my three week infusions-. I just do what I can, when I can, for how long I can. And as Bosco says try to be kind to yourself.
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Thanks Bosco and wendrmn. This past week has been a little better and not so fatigued. As you both said, I'll rest when needed. Thanks again. Best to both of you.
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Had my every two month brain MRI this past week. I had WBR in October. I did not get the best news. Two spots in my cerebellum have begun to grow again. One is in the temporal lobe, just above my left ear lobe. The second one is more problematic. It is located near where the spinal cord ends and the fluid passes into the brain. The doctor is fearful the lesion could block this area. I meet w/ my radiologist this Tuesday. He and the neurosurgeon will meet after and plan the CyberKnife procedure. Hopefully I will have the procedure done in the next ten days. Then I will see where I go from there. The cancer is relentless. I have had good short term responses from treatment,I have received........ but the cancer keeps coming back.
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new here. Oi. One more wk of wbr. Stopped all chemo. Palliative. Prayers welcom
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Oh Barb, I'm sorry, I haven't been around much lately and didn't know you were having WBR. Prayers to you my friend.
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prayers for you both wndrwmn and bhd1.
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Prayers to you all going through WBR, I did'nt know Barb it had progressed. I think of you often and was wondering how you were, please keep us posted. I have a scan on Monday for bone and brain and I am feeling the pressure.
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thx
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Barb so sorry. Sending prayers and healing energy to you.
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Thanks Bosco for your kind thoughts.
Met with my radiologist today. I have five of the original thirteen lesions still visible in my brain. Two have shown growth in the past 2 months...The radiologist says three of the lesions will be treated w/ CyberKnife. Two of them are deep in the cerebellum, just above where the spinal cord ends in the brain. They are close together, stacked. Dangerous positioning. The other is just above and behind my ear. I will be scheduled for an MRI and CT scan in the next week. The radiologist and neurosurgeon will have a planning meeting together w/ my scans. Then I will go in and have the procedure done. My radiologists was very sober w/ his delivery of what will happen. Which drives home the seriousness of the situation I find myself in. I have interacted with him for fifteen months, and this is the first time I have seen him having difficulty showing his upbeat nature.
My daughter wants to come home for support for a few days. But we are unable to schedule the flight (She lives in CA, I live in WA), because we don't have a schedule yet. I just have to practice patience and I will know more this week.
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Brain MRI showed a 3 mm lesion. I am in shock. I thought that brain mets were reserved for the really smart ones, as evidenced by the people in this group. I didn't think I was that smart.
Also, Abraxane stopped working on my pleural lining, which is much thicker than before.
I am a Brain Mets Sister now.
Brenda
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so sorry adverb. Thai just happened to me. I had full brain radiation. Last tx on Friday. Is the nausiaI feel part of it? What can I do for nausea. Help please
Ease
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Brenda,
So sorry to hear about your progression. We are here for you as you have been for so many others on the lung mets thread.
What have they recommended for your brain met? Is it just that one 3mm one? Hopefully you can just have it zapped with cyber or gamma knife and be done with it. I had more than a dozen brain tumors at first diagnosis with the largest over 2cm but whole brain radiation pretty much got rid of all of them. Only the largest is still visible but it doesn't seem active.
Hugs, Susan
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barb: Did you have one tiny lesion like me? I think steroids and zofran might help with nausea. I'm sure there are other medicines that can help.Hang in there!
Susan: My onc said he is more worried about my left chest wall. He wants to attack it with Ixempra or Halaven. I thought he would recommend Xeloda (my preference) but he said Xeloda could be too risky, we need to take care of the pleura first. So I was surprised. I guess I'm lucky that I have the brain met today and not ten years ago. I had 5 friends who died of brain mets.
You'd think Onc would want to zap that little met first, right? Anyway, my husband and I will talk to him on Friday.
Hugs,
Brenda
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ad verb unfortunatly my brain met was in cerebellum. . And another higher in head area
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thank you and your prayers are welcome
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barb, I'm praying for you, too.
Susan, my onc said we will wait till the next mri to do anything about brain met. Next one is in 2 months. Does that sound right?
Hugs,
Brenda
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