Brain Mets Sisters
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Hi Nash,
Thank you for sharing your experience, it really does help me feel I am on the right path to not do the mx. I pray the best possible outcomes for you.
I think my instinct to back off is best at this point. I was really just trying to cut the cancer out, but that is not going to work. I do want the primary and stubborn lymph nodes gone.
My doctor is calling the Radiologist, and I go see him tomorrow. I hope to get more information to solidify my choice, but for now I know this is my path.
Thanks again!
Angi
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Hi Mara,
So far I am strong. I am looking forward to taking some time for myself. I needed the stats somewhat to help me decide what to do re: working or not working, etc. I won't be looking at them any more. I try to stay off google, but when I get new information I dig around a little just to see if I can inform myself enough to make a decision. So glad I found this board. I also found a support group on Fbook. That was very helpful.
Thanks for sharing! I appreciate the support!
Angi
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BAU,
So glad to hear about your progress!
Angi
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Thank you Dizzy Dee,
I am 49 and will be 50 in November. My cousin died at 35 from BC Mets to bone. I always said I would do the Mx, but now I have changed my mind. I pushed for it without asking my dr.
I think my body needs the energy to fight the BC- not heal a Mx. I do want to have the lumpectomy and lymph nodes out. They are being stubborn. Everything shrunk from 4cm-.8 cm to 3.2-.5 cm and metabolically from 17.4-7.7 SUV to 3.2-1.2 SUV. My brain spot is only .3 x .4.
thanks for sharing!
Angi
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Goodie,
Such encouraging news!! Yay!
Angi
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Goodie - awesome news!!!
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Yay goodie! So happy for you 😀
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Thanks for all the love. I saw my MO yesterday. He was so happy for me that he actually hugged me. No changes in my body. Scans are clear and tumor markers are very low. I will continue with arimidex and see him back in 4 months.
Angi, hang in there. Those first few weeks after diagnosis are tough. You'll feel a lot better once you have a treatment plan in place and can move forward. I did have surgery to remove both the tumor in my breast and in my brain, but there were unusual circumstances surrounding it. I opted for the single mx, no reconstruction, when I was staged as 1a. 10 months later I suffered a seizure because what had been diagnosed as a brain cavernoma during my initial work-up was in fact a solitary brain met. My neurosurgeon operated to remove the suspected cavernoma because it had bled and caused the seizure. During surgery, he discovered it was a met. I had gammaknife to the tumor bed a month later. So that's been my experience. If faced with the true stage 4 diagnosis right out of the gate, I don't know that I would have opted for surgery either. My MO has shared, though, that there is some research indicating operating on stage 4 patients to remove the overall tumor burden can be helpful. You have to make the decision that is best for you. Much love as you navigate this process.
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I went to talk to the Radiology Oncologist today. He had conferred with my breast surgeon and chemo oncologist. I am cleared to have a modified radical mastectomy on Monday(removing the breast lumps and lymph nodes that are cancerous reducing the tumor load).
I hope to have Shaped Beam Radiosurgery to the spot on my brain around 9/10. We talked about other options. This will be ONE treatment of a highly focused beam to the spot. I was very happy about the ONE tx. It has the least amount of possible detriment to the brain and rest of my body. Surgery would be way invasive. He said WBR is not necessary for such a small spot. It is very difficult to get a chemo thru the blood brain barrier, so that would take too long.
If it comes back to the brain I may look into a chemo/med though. There are ways to get through the blood barrier with chemo? The Herceptin and Perjata have done a great job on my tumors.
thanks everyone for the support!
Praying for good days and happy news for all!
Angi
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Thanks DizzyDee! I can imagine it would make a difference if you are de novo and don't have much spread of the disease, like in this study. Interesting and important results. Love that they are trying to be more specific about the statistics they put out.
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Angit,
Great news! I also did one shot of radiation (SRS) and it was a breeze. I do have a lovely bald patch back there now though. I opted for surgery to remove the tumor since it hadn’t grown into the brain tissue yet so my story is a little different. After you’re Mx does that mean you are NED? Right now my only confirmed tumors are in the breast (suspicion of dural and maybe lung lesions but scans keep coming back inconclusive)and if everything can behave everywhere else I also want to have them removed possibly. As far as treatments that get through the BBB I have only heard of immunotherapy with other chemo just not able to get through as well...unless there is inflammation. My doctors said if inflammation is present chemo passes through more easily. Hopefully there is/will be more than that someone else has heard of. Best wishes for your surgery and treatments
you may even get to make and keep a face helmet thing from the radiation.0 -
hello everyone....I haven't posted in a long time, it was getting so hard to keep up, I've been trying to do better lately so I'm just going to jump back in.
Angi, I was trying to follow your story....I was DX de-novo in March of 2015. I had no idea what I was supposed to do, so I just trusted my doctors. I did ask when I would have to get the MX and he basically told me about the horse already leaving the barn lol but he also told me something I'm not hearing on here.... he said that recent studies (2015) have shown that removing the cancers home base would cause it to create a new home base somewhere else. I never had any surgery on my breasts and my last mammogram showed no cancer there. I waited about a year and a half before I consulted "Dr. Google" on my life expectancy....I found the most comprehensive questionnaires from the most reputable hospitals and found out that I had anywhere from 3 to 7.5 months to live....I'm so thankful I didn't find that out before I doubled it.
I'm now one month from my 3 1/2 year cancerversary and every day is a bonus day that I really have to thank my doctors for. I'm so thankful that I can trust them and that they fought so hard for me right from the start even tho I was stage 4.(and triple negative) I've heard many times of people just being made comfortable at stage 4 instead of fighting for your life. I sincerely hope all of you have teams that are following your wishes and I hope we all have the wisdom to be able to know when they're not.
Keep shining bright
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Wow, beyond thrilled to see you back Nan, you were missed 🙂
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I am starting Keytruda on Wednesday, after not being able to get Tucatinib for compassionate use. I have mets in my brain and lungs, and both are progressing, so I was taken off Haloven an Tykerb, which had been working. I had cyberknife to the largest brain lesion in March, but there are 15 smaller ones. Don't want to get WBR until/if I have to. So far, I am asymptomatic from brain mets. My cough, though, is getting worse, which is most likely from irritation from lung mets. Does anyone have experience with Keytruda or Tucatinib? I don't qualify for HER2 CLIMB because you have to have been off Tykerb for a year. Thanks, everyone! Any thoughts, wisdom, info, welcome.
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Hi, KatherineM,
I admittedly know nothing about Keytruda or Tucatinib. My sister completed WBR in early December after they discovered 15+ tumors in her brain. WBR got rid of a lot of the tumors, but not all. And the recovery for the several months after was rough. Several tumors resumed growing in the months following the treatment. However, she just had a scan last week after 2 rounds with Kadcyla and all of the tumors have shrunk. The largest one shrank considerably. She remains NED below the neck. She is in good health - we did a tough four mile hike the other day with all of our kids (ages 9 months to 11) - and she even carried her 4 year old for a bit. Good luck!
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Good to hear that about Kadcyla working, my sister in law just started that drug after Herceptin and Projeta failed for her lung mets. I hope it works for her too!
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Hello! I am new to this thread -- I was just diagnosed with BC on July 23, and confirmed stage IV on 8/9 with several bone mets and one to the brain. I will be starting whole-brain radiation this coming Tuesday. Any advice?
In addition to the single brain met -- 1.2cm on the cerebellum, I also have a skull met in the frontal bone and inflammation of the dura. All three of these together have been causing dizziness, and the skull met/inflammation is likely responsible for the additional ear pain and hearing loss. My RO and I discussed gamma knife at length, but because of the symptomatic involvment of the skull and dura (and my own fear that there might be other microscopic mets hanging around in there), I opted for WBRT instead. I opted for a longer course (15 days) with lower dose to minimize side effects. RO gave me a prescription for Namenda to help prevent brain fog.
I will be wig shopping with a girlfriend today, in advance of any hair loss.
Thanks!
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You will get thru this, Twinkle Cat.
I had WBR last year for my 20+ brain mets, and I had Namenda, too. It does help. I still have some eye issues and a bit of dizziness, but that's to be expected. I still go on trips and try to live a full life, despite everything.
Some of my hair has come back, but not all of it. That's okay by me. At least I'm still here - hair or no hair
).L
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I agree with Lita above. WBR was very helpful to me and in the two years since treatment, I only had to do spot treatment in the same area the original met was found. Took me a while to recover and I have very little hair. Wigs are my new passion now.
Once you recover, you should feel much better than before.
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I am so happy to hear that Kadcyla os working for your sister. I just started kadcyla on the16 of August. I was thankful after I read your post.Thanks
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I was dx with breast cancer in 2013. I've done taxol and herceptin. When the cancer came back around a year and a half later I started on taxotere and herceptin. Then I found out o had mets to my C4 and coccyx and started xgeva every 4 weeks. Then after complaining for about 6 months I had a brain MRI which said too many spots to count. Ugh. I did WBR which didn't work as well as we hoped. I've gotten numerous treatments of SRS. It worked haven't had another scan yet. So I got put on tykerb and xeloda only to find out I has spots in my right lung. My ONC took me off tykerb and xeloda and I just started kadcyla. I am anxious to see how it goes. Any in put on Kadcyla would be appreciated.
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Hi Everyone,
I had a Modified Radical Mastectomy to the Right Breast with 4 lymph nodes removed last Monday, 8/13. I then caught a cold on Thursday and have been down till now coughing sneezing and sleeping. I went today and got the drain removed and path results. Only 2 of the 4 lymph nodes still showed signs of bad cells. The breast cells were all clear. So TCHP did the job there. I am very pleased with the healing of my chest. It is doing nicely. I am irked that they did not use any lidocaine and just yanked the drain tube out. It was over in a less than a minute probably, but very unnecessarily painful. Has anyone else had this happen? did you address it? I survived and luckily remembered my Lamaze breathing from 27 years ago, but WOW! and OUCH!
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When my drain was removed, it was done at home by a visiting nurse. It was painful and I howled the whole time it was coming out. I wish a local numbing could have been done myself. That was the worst pain I have had by far. Neither the mastectomy or the craniotomy caused any pain for me and the cancer has not yet done that yet. Worst pain other than the drain was when my brain was swollen and being squished.
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redhummer1- there is a good kadcyla thread I believe.
I was in it for s short time. Much easier on my than Tykerb and Xeloda. It did give me bloody noses. I wasn’t on it too long as it was wonderful for my liver mets, i had progression in my brain while on it. So it didn’t work for me there. I have heard however that many people do great while on kadcyla in terms of brain mets. I hope you fall into the latter group. It’s s great drug.
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RedHummer1 - Here's a Kadcyla thread that might be helpful: https://community.breastcancer.org/forum/8/topics/...
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I called this morning and talked to the head nurse. She seemed at a loss but did say there is no real way to numb that inner area. I did suggest they tell people to take a pain killer 30 minutes before and have a driver if necessary. I tried to be as nice as I could because I could tell she felt bad that it hurt. I know they aren't the enemy, but I had never done that before. They do it everyday. Neither of us thought about anything but getting that thing out of me! Maybe they will warn the next patient? I hope. I suggested. I put it on my Facebook blog and Facebook group...That is all I can do. I just don't want the next person to go through that!
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Parryand1,
No unfortunately I have Liver, rib, and possibly lung mets as well.
but I am doing it one thing at a time. So next on the agenda is kicking the brain mets out...Thanks!
Angi
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Hi Nan,
Thanks for the input. I am only 6 months since initial diagnosis, found out, but didn't really accept the Mets dx about 4 months ago from first scans. I finally accepted it when it jumped in my brain last.
Really grateful that I scaled back my surgery. I did have the right breast removed and 4 lymph nodes. In recovery mode, i e laying around resting.
My docs here all seem certain that the Mets is chronic and manageable?
I will be doing maintenance doses of Herceptin and Perjata, I think, going forward for now.
The brain scan and mask making project is scheduled for September 4 & 6. Shaped Beam Radiosurgery hopefully by 9/10 at the latest.
So great about your 3.5 years!
hugs
Angi
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having focal seizures with brain mets anyone else experienceing thiis
Wand
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wleeky, no, sorry. I never heard of a focal seizure, had to look it up but the definition could be anything from feeling off to deja vu to visual disturbances, so someone may have and didn’t know. What are you experiencing?
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