Brain Mets Sisters
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Oh Momatt, how frustrating. Waiting to find out what to do, only to have someone say "well just talk to the RO". I understand you not wanting her to get worked up and not trusting. You need trust in your MO to allow them to do all these things for sure. I hope it gets worked out soon for you both.
I am hanging in there. Got some good anti-nausea drugs which stopped the vomiting. Started heartburn drug rabeprazole to see if reflux was causing the nausea issue. Eating almost as much as before. Started chemo. Part 1 was today with Herceptin/Perjeta. Had to go through the loading doses and then wait an hour between the two. I slept the whole time. Was a nice sleep. Tomorrow will have Taxol. Should take couple of hours, will be sleeping during it too. Already told mother and sister in law that I don't need company. Not to be mean, but just so I don't feel rude if I fall asleep or simply watch a movie. I look forward to when my infusion drops the taxol and the H&P can go for only an hour total instead of the 4 I spent today. Should be in approximately 3 more infusions.
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Body scans last week are good. Nothing that shows cancer is anywhere. Onc wants to continue body scans 3 month intervals until 2 years post brain tumor discovery, so 18 more months of stress than relief, then repeat...
6 months post SRS for my brain tumor. Some days still feel funky, some day great..
Anyone else out there in the brain only cohort that can chime in how long they did their body scans until Oncreleased them into the lesser scan regime??
Wishing everyone some feel good energy, especially for the upcoming holidays
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Hi Pagej, I'm in the brain only cohort. My brain scans have been every 6 months. My last one was in September. If my next one in March is still clear, my neuro onc will go to once a year for brain scans. March will mark 2 years since my brain met discovery. I'm currently on once a year for body scans, as my body has been NED since my mastectomy in May 2014. Tumor markers are reliable for me and those are monitored every other month. Hope that helps some!
Much love to everyone!
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Hi Ann,
I am getting intrathecal methotrexate for leptomeningeal disease 3/8-16 treatments. Did you get a ommaya reservoir or know of anyone ? It is kind of scary but the lumbar punctures are getting painful and may not be effective. Thanks, Yvonne
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Hi ladies. Just finished Radiation Therapy last week. I seem to have tolerated treatment well. No headaches, but definitely have been fatigued. So glad to have finished steroids because I had just about every side effect.
RO put me on Namenda for Short term memory recovery. I've noticed a significant improvement in my mental acuity.
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Today was a good day. The first one I can remember.
Mri 7 weeks after Gamma Knife has shown lesion has shrunk from 11mm to 4mm. Which is incredible in that period of time.
Previous dural areas either gone or shrinking. Resection cavity is stable. IT Herceptin now moved to every 3 weeks with IV Herceptin and Perjeta.
Next MRI in 8 weeks, the same time as body CT which has always been NED.
Don't accept standard care, do fight for everything you can. Never give up!
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Hi ladies. It appears I am now a member of this group as well. I was diagnosed with mets to hip spine and lungs in April of this year. After chemo, everything appeared to be shrinking and i was feeling good. But then today I got hit with news that I now have 7 tumors in brain as well. I didnt get to look at scans yet so I am unsure of how big they are. Dr said they are small and whole brain radiation is the next step. Can you ladies please tell me what to expect? Are there certain things i should know about side effects, affectiveness of radiation, should I be on other chemos (on herceptine, perjeta only right now.)
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goodie, that's is interesting and awesome. I've also always been NED since surgery in 2014 as well. but onc wants every 3 month body scans. I feel like it's a little much. The radiation and the contrast... I may get a second opinion soon.
Brain onc wants every 4-6 for another 18 month(which would put me at the 2 year mark).
Thanks for info ladies! Freakzillahow often do you body scan?
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Niknak, sorry you are joining our little brain band. I have been through the whole brain radiation. It can be effective but does take a while to recover from. Ask for some antinausea meds, expect to be on steroids for a while. You will be VERY tired for a couple of months. You will think you won't feel better, but slowly you recover. For myself, there was some tinnitus but that is gone. You will lose your hair approx 2 weeks after. You may notice some short term memory loss, but I have not noticed. It is doable, but recovery is slow. Take your time. Good luck.
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For my wife it was the same as described by mara51506. Extra sleep worked wonders though, making the tiredness almost negligible.
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Page,
Body CT every 3 months, has always been NED. Was due next month but we asked for it to be moved back to January so we had no scans around Christmas.
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Thank you Mara51506 for the information! I have been reading this thread, only in page 60 but there is some great, helpful info. I have a huge list of questions for my dr Monday!
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NikNak, Mara51506 is right. I just finished treatment two weeks ago and the major side effect I've noticed is the fatigue. I do have some ringing in my ears. Haven't been troubled by nausea at all. In fact, most of the side effects I experienced were due to the steroids. Fortunately, the RO put me on a 5 day taper after completing treatment which I finished on Tuesday.
My RO was very good about explaining what to expect, so if you have a good RO, he/she should have explained it to you. He recommended that I try Namenda for short-term memory deficits and I can say that I have found it to be very helpful.
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Just getting caught up on my favorite thread.
So sad to read about the end to your treatment KT. I agree with the others though that the end of treatment does not mean the end of you. Have you read "Radical Remission"? Very inspirational. I also watched an amazing documentary today called "The Connection: Mind Your Body". You can watch it for free here: https://theconnection.tv/. I'm a big believer in Chinese medicine and yoga. Don't know if you have access to that.
Quick update on me. I had a small progression in my lung. This is really the first progression I've had since my initial mets diagnosis more than 2.5 years ago. So I got off of Xeloda and started Ibrance plus Faslodex last week. I'm part of a trial comparing 125mg vs. 100mg dosages. I've been given the 100mg dosage which I'm relieved at. So far, not a single SE. Hope that will continue. So far, doesn't seem like the targeted radiation to my lung did anything but I'm hoping it's just going to take more time. It's been just over 4 months.
Oh, and I adopted an amazing dog through Sheltie Rescue! Named him Buddy.
Hugs, Susan
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SusaninSF, sorry to hear of the progression. Glad to hear new treatment combo is treating you well and that you are without SE's. That is such a gift in and of itself. Buddy looks beautiful and looks to be a fine addition to your family. Congratulations on him.
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Susan, Buddy is beautiful : x
I found xeloda quite tolerable when I was on it. I wish you great results!
I'm now at inpatient hospice admitted on Saturday 19. I had bad n & v and pain, and they had room
It's lovely here, great Drs & nurses etc. I get plenty of visitors, great food I can eat etc. - so I guess they'll keep me til I'm stable and work out a plan for going home again. Sorry I haven't read too much of what's going on, glad to pop on & report in. Hope everyone is ok.
Love, kt
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kt,
So wonderful to hear from you. Relieved that you found a nice place. Hopefully you will be able to rest your body and let people take care of you. With time to relax and off of treatments, I trust you will feel stronger soon.
Hugs, Susan
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Thanks Susan
I'm about to say night night all
It's been a long day, but a good one
Xxx
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kt- I am so happy you have found a place that allows you to relax and take care of yourself. It was great to hear from you.
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kt- wonderful news that you found a place. Wishing you much peace and comfort.
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Susan what a gorgeous dog. Buddy is a great name. So sorry for the progression, Susan how long were you on Xeloda? The ibrance thread is great also, I used to be on it, for my daughter they first gave the Ibrance then Navelbine then she is now on Xeloda. They will give all the tricks that could help you figure out how best to work it. Josie also just started Ibrance.
Mara so nice to hear you are feeling better, and already guiding others. How often is your Herceptin? It's really crazy how companies, insurances order you to take what's not necessary, and sometimes when it is, they deny it. Just read an article http://www.kevinmd.com/blog/2016/07/time-doctors-tell-insurance-companies-really-feel.html?pop=0&ba=1the same old same old.
PageJ great for you!
Pwillmarth I was just thinking about you! So you did the WBR also? My daughter has so many lesions, RO says absolutely no WBR only as pain gets to a place and it really bothers them, then they try SRS... We are not so happy about it, because there is this constant fear that it's gonna grow. Were your lesions many? In the brain? And in the skull? Or only in the brain?
Freakzilla great news! Good luck on H/P.
Nicnack could you explain where in the brain are the tumors? Are they large or small? I am also trying to think when RO decides to to WBR or SRS and such. So Sorry that you are here, but it's a great bunch of ladies.
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I just want you ladies to know how much I appreciate you and your knowledge. I am still making it through the thread and i am just blown away by the perseverance and strength you all show in this.
It was a hard weekend for me, getting the news Friday. Everything I read online just scared me senseless. When i was told i had it in my bones and lungs in April i was upset but not discouraged. I had faith that i could live with it for many many years if it was stable, and after taxotere it was. But this brain thing has me freaking out. There is nothing positive there. I have a 1 year old baby girl, an 8 year old boy, and an 11 year old boy. Plus my husband is a police officer and with the current social issues i am terrified our kids with one day be parent less. But the dr put me on xanax and i feel better. I havent cried as much.
I got my scan results today. They range from 5mm to 10mm and there are 10 total. 6 in my the front near my eyes, forhead, and 4 in lower back of head. There was also some swelling so i started 8mg steroids daily. So far so good on steroids, just wakefulness, but no strange se. Its only been 5 days though. I see radiation dr tomorrow for first time. I know i will feel better once i see him and have a plan. I worry that i wont be able to care for my 1 year old while doing this WBR. Does anyone have experience going through this with small children?
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NikNak,
Everyone is scared of brain mets but honestly, in my young MBC support group, the brain mets people have done better than the liver people. Case by case of course but I have a friend who is also ER-/PR-, HER2+ and has lived with brain mets for must be close to 10 years so far and is doing very well and doesn't look to me to have any quality of life issues. She lives alone and takes care of 6 elderly dogs.
With a 1 yr old I would try to get help. During treatment you may not feel very fatigued but about a month out you will probably need to be able to take long naps during the day. Unless your daughter takes very long naps, I would look for someone to come and help you when your older kids are in school if your husband works during the day. Or is day care a possibility? An 8 yr old and an 11 yr old should be able to help you out with the baby when they are home. My kids were 2 and 6 when I first had an early stage diagnosis but by the time I had WBR two years ago they were 16 and 20.
Have you looked at the Mothers of School-aged Children thread? I graduated from the thread this year but it is a great group of Moms who can give you better advice about being a Mom with mets.
Hugs, Susan
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Niknak,the fatigue about a month from treatment is the same as mine. I am 2 months from WBR, I believe the WBR is abating now. You should look into help. Even with exercise, it can be severe. Don't be scared too much, it will improve. My current exhaustion is the taxol I had. It did not treat me well even before. It is a long, but doable haul.
Ask for nausea meds, just in case and get ranitidine for the steroids.
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Hi Ladies (assuming you all are)
Recently DX Stage IV with mets to liver and lung. Had a full reponse to TX which is awesome and I'm grateful for that. My question is around PCI or Prophy Cranial Irridation which my RO wants to commence Dec 5 due to the lung mets and being HER positive.
I originally posted on the for those that arent Stage IV but have questions and Mara51506 (hope I got that right) was so kind as to invite me to this board for questions around brain radiation that I have. I actually just spoke to my nurse and she said that the dose is lower than if mets presented so they aren't prescribing steriods etc. She said the dose is low vs dosage for mets so I shouldn't experiene swelling or anything,
I did get 6 rads for a 7cm tumor found on my supra vena cava which is the vein that carries the blood from your heart and had no issues really other than mild fatigue. This is what got the ball rolling 5 years after BC DX. I had experienced swelling to my head, neck, arms and upper torso, thought it was an allergic reaction to something when this was found. I also completed 12 Tx of chemo (Cisplatin and Etoposide) and had a full response to lung, liver and 99% of the heart tumor. I'll be scanned every 3 months for that.
I know this is terribly vain and should be the last thing on my mind but did anyone have hair return at all after TX??
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Most people's hair starts coming back within three months. Although it is not common, there is a small possibility it does not come back.Some people comment it could be thinner and curly.
Glad to hear will not need steroids. Saves those SE's. I would still count on the fatigue though, even at a lower dose. If you can be, light exercise is helpful. SusaninSF has had this, gciriani as well, from what has been read, it has been good for them.
Good Luck.
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Well I have my wig that I bought so I'm good in the meanwhile. Fingers crossed on that count. Glad on the sterioids too. Although they do their job, they send me on an eating frenzy.
I did get a puppy in May to get me out walking before this so excerise is basically covered. For sure the daily walking helped me during rads and chemo this summer/fall. I'm usually pretty lucky all around on SE's in general both 5 years ago and this time. I'm also going to try to wrap up my Christmas shopping this weekend too. Hate the malls on a good day never mind with this going on at Christmas time!
Fortunatley I also work from home and my boss has been amazig throughout. Just hope I can keep up but I'll have downtime over the holidays. I worked throughout chemo so hoping for the same with rads.
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SusaninSF,
Your post has just made my evening! It so easy to lose hope but stories of those of us living with this for so long, 10 years!, is just so amazing. I know it isn't the norm, but the possibility is there! And that gives hope. Thank you!
I am very blessed to have lots of help with the kids. My parents are taking shifts here and there in the evenings which is when my little one is a ball of energy. My boys are very responsible and independent and super helpful as well with their sister. I think it will be ok. I saw the radiation onc and we are starting 14 rounds of WBR on Tuesday.
I am going to check out those boards you mentioned. Thank you again. I hope all you US ladies had a blessed Thanksgiving today making memories with loved ones.
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Well, I have 3 of my 14 WBR behind me. Definitely ready for a break over the weekend. The procedure itself isn't bad. I keep smelling a weird burning smell during it. I like to think it's the mask burning and not my brain matter... Lol. Not feeling anything yet but I was told it would come in a few weeks, so for now I will enjoy the lack of side effects rather than dwell on them. I hope you lovely ladies have a good, pain free and peaceful weekend.
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I also found this one:
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