Brain Mets Sisters
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Vickib,
I too am done with working - driving me crazy. I have been at my employer for 7 1/2 years, and they have always been soo good to me. They should not be able to "let you go". talk to HR right away. You should now qualify for long term disability and SSDI. I am in the process myself.
MamaPeg2
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Unfortunately, I do not have LTD insurance but I am going to work on SSDI. I have been off since the first week of October and I know they are struggling covering my duties and I feel bad for my coworkers working extra hours, etc..I am going to call HR Monday, there is no way I could go full time again and retain any qol after that. I was working 45-50 hours a week, loved being busy but I do not think I can do that again.
Thanks for the info. Keep me posted and I will do the same.
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I could do excellent work for a few hours a day. The hours separated at 2 at a time.
Neurooncologist said, the thing about the brain is, it turns itself off..... you get sleepy and cannot do what you used to do. Its not that you are controlling it.....
Im still selfishly looking for free trips or at least discount. anyone?
Hair is coming in. I thought it would not come back on top but it is a bizarre male pattern deal...... I'm going to try to wax it so that it all gets to the same place at the same time?
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me again........ where are all the rich people who could donate their warm beach houses to us? Anyone heard?
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We can always count on you for good advice and info. Thanks for confirming that. I was NEVER one to take a nap but I find myself doing it more and more. You made me feel better. I wish I had a nice warm vacation home for you but I am a poor Ohio girl:) Sure sounds nice though!
Where do you live? There is and organization that does this in Cincinnati but I think it is for Ohio or surrounding areas. It is called the Karen Wellington Foundation. Hopefully there is something like that in your area. My sister just started and organization for local folks in her small town in GA but it is for people in her county. They are out there, just have to find them!
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@VickiB - I am working with a met to my lower cerebellum which affects balance and co-ordination apparently, but the lesion isn't causing inflammation so that is not an issue at this time (just some blurry vision but that could be unrelated) and hopefully won't be before they zap it.
@K-Lo - I live in Florida, 1/2 hour from the beach. Its not beachfront sadly. Our dream beach cottage fund has been completely drained by the medical bills!
Yikes! Its was getting chilly even here, but no snow at least. We are going to get warmer now at least and hopefully the cold spells are behind us. I only have one lesions that is less than 1cm but my Docs said that they can Zap lesions as they appear with the Cyberknife. They are saving WBR if there are numerous lesions and as a last resort.
Something interesting my docs said regarding the Gamma Knife that I wanted to share. They said they sold their machine to St Vincents (their competitor) since they feel its outdated. Hmmm, do you think there are two camps out there?
Well, either way, here's hoping the cyberknife works!
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Are any of you ladies having problems with edema and inflammation of the brain mets during Xeloda
I was in the hospital again yesterday for brain swelling, edema and a massive headache, was given Fentanyl for the pain and Dexamethasone for swelling. Headaches are a little better but taking a lot of pain meds. The Fentanyl they gave me in the hospital made me vomit up the dex. So although it was helping, I lost the dosage on the way home.
I'm hoping its a tumour flare since all my cancer sites are aching.. Anyone else experience this?
Thanks, Karen
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Karen,
I am on Xeloda also since sep of last year. I have the same symptoms as you. I have two spots in the cerebellum that are not responding to radiation. They are not sure if it is tumor or necrosis but the board voted in favor of tumor. Hopefully I will see the neuro surgeon next week and he will agree to operate.
Kathy,
Good to read from you.
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Hi Ladies, I have headaches here and there with x but I am doing 1 week on, one off. Felt awful 2 weeks on. Hopefully they can straighten it out so you do not have any further issues.
Sending positive thoughts. Xoxo
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Kathy - How big were your tumors? Sometimes that when they make the decision of craniotomy or not. The ones they could safely remove were 3.4 cm and 1 cm. I had Radiosurgery (similar to gamma knife) on the one in the left temporal mode which was 1 cm. They ones I had removed have not recurred as of yet. My surgery was in September, but I had a setback with a brain infection. But all is good now. Except for pain in my existing tumor which was radiated. It's stable though, but I think the Xeloda is causing a flare. Since every tumor I have has been causing huge pain this week. Never 2 pains at a time, but pretty intense. Hope X is kicking ass and that's what the pain is all about. I hope you get your surgery. Please keep in touch.
Vicki - I'm only on my second round of X. I may be decreasing too. Thanks for the info.
Hugs, Karen
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I am done with 10 treatments to my back and 15 treatments to my brain. Recheck on the brain MRI will be on Mar. 31st.
Starting back on chemo on Friday - so excited REALLY! I will be on taxotere/carboplatin combo. Once every 3 weeks!
No taxol since I am triple negative.
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I had 10 treatments of wbr in Aug '13. I was extremely fatigued with lots of nausea. Took zofran for nausea. Lost most of my appetite and lost about 23 pounds. I did eventually begin to feel better after about 3 months. Most brain mets shrank but some came back Dec '13. Now getting gamma knife next week. Hang in there--you will begin to feel better!
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Karen, I hope it's in there kicking ass and blasting them to smithereens! Keep us updated and I hope the pain subsides.
I am glad things are turning around for you Nl!
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I hate to ask a vanity question but did your hair grow back after wbr? I hate having anything on my head except for my hoodie, that bothers me the least. Hats, scarves, wigs, anything that hugs the head drive me crazy! I can't stand my reading glasses either! I just want to know if I just need to deal with it and get used to it. I am looking forward to the warm weather so me and my bald head can work on my flower beds and feel the breeze. No one can see me, for the most part;)
Thanks for everything ladies. I hope I have not offended anyone for asking such a silly question, just want to know.
Edited because, Karen, your hair is so stinking cute in that pic.
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Awww Vicki, that's so nice of u to say. Thanks. Regarding the hair loss. I don't have experience with web. But I was told by my dr and hairdresser that I would never grow hair in my two 6" stitch scars in my head and its been 4 months and its totally grown back. However, Im always the exception to the norm. Never say never....even if that's what they tell you. Good Luck!!!!!!
Hugs, Karen
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Hey all, has anyone heard from dearjilly? She was starting WBR, and I am wondering how she is doing.
Thx
Dawn. xx
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I just was talking about this to my friends onc. I go with her to all her appts. Anyway, I notice that the PET always reads "from skull base to distal femur" I ask Dr. and he said they only check the brain if patient is symptomatic. I personally don't like or understand that, but that is what he said. Best wishes to you and your family. Bernice
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Dear All,
It seems my mom has another progression. Last year in January, she diagnosed with multiple bone mets, 2 of those were in scull. She was little bit better for few months. In May 2013 just after her retirement as school teacher, she had benign thyroid removal, 2 months down the line she had Acute Renal Failure. Zolendronic acid had to to be stopped for 3 months, and now on Xgeva and Tamoxefin. She was very strong Er and Pr positive. But last month she had terrible gastritis like symptoms with nausea and vomiting. We did ultrasound and kidney, lung, stomach, liver and pancreas came out clean. Yesterday while regular visit to Neuro she had focal seizure to her left hand for few seconds. Neuro called for MRI and saw "Leptomeningeal enhancement at left high parietal area" in brain. Our oncologist has called for spinal tap as he doesn't believe it could be brain mets but radiologist and neuro feel otherwise.
My mother never had complain of persistent or severe headache, even now she doesn't have any. In fact her bone pains have reduced since last one month. Oncologist believes that with patient like my mother who is strongly ER PR positive with only bone mets and no other soft tissue involvement this doesn't look like malignant brain involvement.
If it is Brain mets, what would be the course of treatment, can you please share your experiences? I am very worried for my mother.
Regards,
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Dawn......I'm here. Just been real rough and tired. I'll be back soon.xoxoxoxxox
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Oh Jill, thanks for posting! So sorry you have had a rough time
. Rest up, and get back to us when you are able. We miss you!Love. Dawn xxxx
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mri showed 4 new small onesone has swelling around it so back on dex at least it giving me an appetite since lost 14 pounds will have cyberknife again when i geet back from md andeeerson will keep u all udated as long as my hands can type sending love light and healing
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can anyone comment on length of time living with brain mets? I just had an MRI for the possibility of brain mets after a petscan came back showing cancer was stable but tumor markers doubled and headaches started occurring in the mornings... I'm just really terrified..
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@ysw: My daughter was diagnosed with leptomeningeal mets. She had no symptoms except intractable vomiting and it didn't even show up on a spinal tap.But those great doctors at UCLA figured it out and raced her into surgery( this is an urgent diagnosis!!) to put in an Ommaya port in her brain and then infused herceptin. After one treatment she was improved but she still gets this every 3 weeks and there has been no recurrence. That was about 2 years ago. She also was er and pr positive. Best wishes for your Mom.
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@sbidalia: Thanks for your email. This is helpful. Could you tell please tell me how the doctors finally completed the diagnosis, was there any other tests to performed, did they do CSF-Cytology and was that conclusive? Your thoughts and experience sharing will immensely help in my mother's diagnosis.
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I think the main thing was the leptomeningeal enhancement, just as in your mom.(that and the horrid vomiting). They did do the cytology but it was negative and they said that is very common. They first tried lumbar puncture with methotrexate but she hated the puncture and reacted to the methotrexate. So they went with the Ommaya port and it was so much more tolerable to her and she has always tolerated herceptin well so we went with that. Some say the Ommaya port is antiquated but it was pretty brand new when she had it inserted 2 years ago and last year they first started clinical trials with it so I would say antiquated is a poor choice of words but in this fast moving world of cancer treatments, maybe it is. But it works for her. They told her that she had less than a week but two years later she is just as active and sharp as she was before she was diagnosed..running around taking care of 7 young children. Under the forum "Stage !V and MetastaticBreast Cancer, there is a Topic called Leptomeningeal Metastasis and a fellow named Gregory Pawelski talks about newer treatments. I don't know him but he sounds very knowlegable and you may want to contact him. Are you with a major medical center? You really need a team of doctors who aren't afraid to act quickly in this case. Bless you and your Mom.
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Hi ladies-been a while since I wrote. I've had 4 treatments of Herceptin/Navelbine and Afinitor. Been a month since bad neck pain and MRI showed brain tumors progressing. Did WBR in October. Thought I had too many lesions for Gamma Knife but Radiation Onc says no, I'm a candidate. Course now I've already started this trial and can't do that just yet or I'll lose option of the drugs. Got 3 more treatments til next scans. Guess I'll wait til then and re-evaluate but I'll do anything and everything. Got 7 and 3 yr old boys-I NEED to be here! Damn cancer! Anyway, thinking of you all!
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Curious-Anyone HER2 + experience intrathecal Herceptin and did it help?
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Dear Hendricks,
No chemo since brain mets. Had Gamma, was so proud.
Then somehow we are talked into WBRT in October kind of against THEIR WISHES? Had hilarious reaction to it in about 1-1/2 months.
Not a fan of Hospice .... we will see....
K
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Hi K-Lo- Well, I'm doing ok for now on this Afinitor/navelbine/herceptin combo but won't know if i have progression for a few weeks. One Radiation one says I'm a candidate for gamma and one says no because I have too many lesions. Don't know what to think but guess the answer will come when I see my MRI in a few! It's been almost 2 years since my recurrence but the brain stuff is certainly scary at this point! Hope you're hanging in there and take care!
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I hope you find the answer to your question. I hope the trial drug is working wonders!
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