Brain Mets Sisters
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Angi, ultimately, you must do what feels right for you. That being said, you make some good points and with Mets in multiple locations, I’d probably question the breast radiation myself. Could your docs give you any stats on rads vs no rads for your situation? Hopefully, the H&P will keep any rogue cells from acting up.
Babs, I had no idea about the brain mets, sorry. I can tell you, that although scary, brain radiation is usually quite tolerable and effective.
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Babs, I have had both whole brain and local brain radiation as well. WBR made me very tired for a while but I recovered well. It is very tolerable. My only casualty after two years was my hair. It never came back. I love my wigs though. Good luck with your rads. If you find yourself dizzy during the rads, tell your onc. They can help adjust the steroid dose to combat that.
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You should do fine, Babs.
I had Whole Brain Rads (with my 20+ brain tumors) exactly a year ago - ten zapping sessions. Ask if they can put you on Rx Namenda/Memantine to minimize cognitive lapses and other neurological deficits. You titrate up on the brain medicine dosage, and then you titrate back down when it's through. They usually keep you on it for about 3-6 months. It was very tolerable. I had no problems.
Yes, I lost my hair, too, and some of it did come back, but most of it did not. I now have MALE PATTERN BALDNESS. I look like a cross between Elmer Fudd and California Governor Jerry Brown
). Fortunately, I have always loved wide-brim hats and pretty scarves, so that's not a big deal for me.Keeping you in prayer, and spinal rads should really help with pain issues and lytic lesions eating away at the vertebrae, which is a real drag. I have lost over 2 inches of height because of he cancer eating away at the spine
(.L
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Hi Babs,
I hope you are feeling okay! This will be my first Rad so not sure what to expect either! Hugs!
Angi
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Illimae,
Thanks for the question... when it is so close and new I can't think of what to ask.
Tomorrow is going to be an adventure!
thanks
Angi
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Thank you al for your words of encouragement.
Waiting for first session of 10 for the brain and 7 sessions for the spine.
I am taking that medication Lita- thank you for posting about it previously.
I have my wig ready and waiting for the upcoming hair loss. Unlike you Lita, I do not look good in hats but I sure can rock scarves. I bought a lot of them!!!
Babs
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Babs take it one day at a time. We are with you.
Anji, I hear you. I had to make some calls in my cancer journey that you only get to make once and have to figure out for yourself. You make very good points. I did the 40 or so days of breast radiation and have not had any significant side effects. But at the time whether it was the radiation or the daily apt I was exhausted and raising a small daughter. It took me a long time to regain my previous energy level. But I was stage IIB and had opted for a lumpectomy so had to do rads I in order to equal a mastectomy in the reaseach of the time. For example I opted for TC a small opposed to ACT. Think on it but make the decision yourself. Trust yourself.
Jose
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Hi Jose-
I am HER2+, Mets Denovo so we did TCHP. I am still on fence, but leaning toward doing the underarm.
Dr said 30% risk reduction of it coming back there if I do rads. Internet says 26% reduction...not sure which is more accurate. He seemed flippant with his answer. He said 2-5% increased risk of lymph edema.
My surgeon only removed 4 lymph nodes. So my current risk is 5-7% of lymph edema.
So 2-10% risk of edema issues versus 74-70% chance it would not return in the same spot.
I have not had a scan since surgery of the area. That would help my decision I think. I might be able to do that next month. He said it is more for "clean up."
I did not have any of the Foundation One testing. I would like to know my personal risk factor better. Working on possibility of getting my doc to order that testing/insurance to pay.
Thank you Jose
Angi
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Hi everyone,
Just wanted to give an update. I had the Shaped beam radiosurgery on Thursday. Still on the dex and not sleeping much, but did get a nap in today. Sleep improved a little last night. Hoping to go to sleep after this update tonight.
I have not had many symptoms from the rads. I had some pain in my diaphragm/gut area today. I feel a little shaky, but that could be the lack of sleep and medication. My recall of names and such is still a little worse than normal and typos seem increased. Fatigue with steroids is such a weird combo. I can't sleep, but I can't do much either.
My ribs are bothering me more. I go Monday to do a planning session to use Rads on that. Dr said it will be 13 sessions. I don't like it, but I want the pain to stop. Hopefully it will. He said it usually does. He also said it will only have a "postage stamp" sized red spot. It is so much clearer a decision than just trying to clean up something that might not even be there yet.
If it doesn't help the pain, I will have to talk to my onc about pain management. I hate taking medications. I have a pain patch for my 3 herniated disc/tear/degeneration/ arthritis that I have been living with since a car wreck in 2001. The patch is not cutting the pain in the rib- and I think is trying to, which is starting to make my back hurt more too.
I hope everyone is doing well and I appreciate your support and comments!
Sincerely,
Angi
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Angi,
So sorry to hear about your rib pain. I'm mystified by why they are suggesting radiation on your breast area when you had no cancer cells in your breast tissue.
I hope I'm not speaking out of line but I'm just concerned.
Hugs, Susan
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Hi Susan, Not out of line at all...
The Surgeon removed the four lymph nodes that had shown positive for cancer cells on PET during my mastectomy. Two were clear after my 6 rounds of TCHP, two were not. It lowers my tumor load. This makes my risk of edema only about 2-5 percent.
The Rad doc said the radiating is to "clean up rouge cells." HER2+ Microscopic cells that could grow into more tumors. HER2+ is aggressive about it's growth. However, since the breast tissue was all clear, I am definitely not doing the chest wall.
The underarm is really the only question. It seems unnecessary, a lot of radiation, and maybe a little insurance gouging to me.
I am doing Herceptin and Perjeta so that should continue to keep the cells under control. I am putting him off unless the H&P stops working. My last scans showed much lower metabolic activity in my tumors. If my next scans show increase, I will reconsider.
Thank you for the concern always!
I hope you are doing well!
Sincerely
Angi
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Thinking of you all. Hoping the rads work well with minimal SEs for those having treatments
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Angi,
I'm not a doctor, but I don't think eliminating "rogue" cells with radiation makes a lot of sense when we are metastatic. By definition, we have "rogue" cells. These are usually treated with systemic treatments.
Whether or not lessening the tumor load results in better survival outcomes is an area fraught with controversy. I have had a breast tumor for at least the 4.5 years since my metastatic diagnosis (brain, eye, lung, bone, breast) and my MO does not believe that removing it would help my survival. DizzyDee cited a study that if you are de novo and don't have much spread elsewhere, removing a breast tumor makes sense. However, from your details it looks like you have liver and lung mets so you are not in that category. Not clear on the timing of your procedures. Did you have a tumor in your breast before your mastectomy? Did your doctor know you were metastatic before your mastectomy?
Have you gotten a second opinion?
Hope I'm not asking too many annoying questions. Feel free to PM me if that is more comfortable or just tell me to stop prying.
Hugs, Susan
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I'm w/Susan.
If you haven't already done so, DO get a 2nd op. We will ALWAYS have rogue cells, unless our MO pronounces us "NEAD," No Evidence of Active Disease.
We kill some cells w/chemo and rads, and then new ones (especially ones that 'adapt' to the current Tx and 'mutate') pop up.
I have had several sessions of rads; they have helped, but they are NOT w/out risk either. I feel rads should only be employed when absolutely necessary, to help w/pain, spinal compression, brain metastases, etc. Using rads indiscriminately, just because your RO can, could make matters worse. Radiation can also PROMOTE cancer in other parts of the body.
L
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Hi Lita and Susan!
Thanks so much for the feedback. I had a 2.5 tumor Invasive ductal under the nipple plus rare micro calcification tumors in my breast and 4 lymph nodes just from the mammo/ultrasound. Confirmed by biopsy 2/8. We did six rounds of TCHP. Then the mastectomy 8/13.
I wanted the Mastectomy because I wanted to "get rid of it." Then I found out it was in my brain. I decided against a full mastectomy, reconstruction and just had the one breast and 4 affected lymph nodes removed. I'm glad I did it. I feel more free without it. the breast was completely clear, no cells, the lymph nodes had two with cancer cells two clear.
It is weird. When I saw pictures before the surgery I was terrified. I thought I would be traumatized but I am not even self conscious. I don't like that I have cancer, but somehow it feels like a relief to have the breast gone. Still having some pain in the underarm only. Chest wall is great.
My doctors still don't use the term Metastatic. They use the term Chronic.
My scans say metastatic. Since the first scans. IT's annoying. I know they are trying to keep me in a good place and not freak me out. But it was a roller coaster until I realized what all it meant. Now that I know I can go forward and live my best life. I agree about only radiating for the pain and brain! If my rib wasn't painful I would not be getting it done. I originally didn't even want to talk to the radiologist. Chemo and Antibodies were enough.
I don't know how to go about getting a second opinion? I have treatment 9/25, h&p. I will see my doctor in October, another H&P and will ask about scans. My numbers on the other areas went down on my last Pet/CT scan and shrinkage too. But I found out about the brain met which was new. First brain MRI was clear in March.
kso I'm not NED, but improvement is good. I'll take it!My Onc is saying a pill is next, if scans show still active/because of brain, etc. We will talk about that in October.
Thanks so much! I am on a group on Facebook, but this chat is so much cleaner. I think it is a little overwhelming on my page now.
Thanks again!
Angi
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Angit, thank you for sharing your info and treatment with us. I must admit to being curious about the pill you mentioned, as I’m not aware of anything in pill form for HER2+ brain mets. Please let us know about that if/when it comes up again if you don’t mind. I wish you well for your next visit.
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I’ll image- the pill would probably be Tykerb. It is used to treat Her2 + brain mets. It is usually taken in combination with Xeloda, also a pill.
It’s a combination I am currently on and was previously on for several years previously.
It is not an easy combination to be on, but then what chemo combination is
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Thanks leftfoot, I assumed tykerb was IV like H&P. Good to know 🙂
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Thanks Illimae and Left Foot.. that is good to know! I know she mentioned Xeloda and I kind of misspoke..I think she was just trying to stop any future mets in other places not necessarily the brain...but that is good to know!
Sincerely
Angi
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Hi my Fellow Brain Metsters! I just wanted to drop in and let you know that I am still here too. I was originally diagnosed with 8 brain mets in Feb 2016. after having some seizures. I had SRS to them, the seizures stopped, and 3 of the mets completely resolved. My brain was stable for just about two years and in that time, I tried Tykerb, Avastin, and various other things that have shown to work in Triple Positive brain mets). Then late last year, my MRIs showed aggressive progression of the same previously treated ones. This resulted in me having a double crainetomy in April two remove to of the remaining lesions, however, the last 5 remaining mets were still stubbornly growing. That led me to have 12 sessions of low-dose targeted brain radiation to the 2 most aggressive ones in July. My follow-up MRI at that point, showed that those 2 lesions were stable, but the other 3 were still progressing at a scary rate. That initiated some of the first "end of life wishes" conversations with my doctors, because I was/am feeling some neurological issues as a result (numb in my left leg and arm, balance issues when walking). I talked my doctors into letting me try a toleraoralable oralchemo pill called temodar for a month that could be mixed safely with my current MBC drugs (Navelbine, Herceptin, and Avastin). Temodar is approved for use in "traditional brain cancers", but I wanted to give it a chance to see if it would be the one drug to stop my metastatic brain tumors.
So last week, I had my first follow-up brain MRI since starting the Temodar and much to everybody's surprised, my brain was stable to improved (my midline shift corrected itself) after only one month on it! I literally collpased on the floor shaking because I expected to hear anything but actual good news!
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Hey Becs! I just got an Army of Women email about a trial of an IT Temodar/Herceptin combo to prevent progression of brain mets. I’m thrilled for you, this is wonderful news 😀
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That's great, Becs!
I'm taking NOTE of Temodar pills. I still have stable-to-active brain mets, and it might be worth suggesting.
Thanks again for posting,
L
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Becs! Congratulations on the fantastic news! So Happy For you and thanks for sharing! I won't know about the progress or status of mine for a while. Just had my first brain radiation. So scary! So glad to hear you are improving!
Hugs
Angi
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Becs, you go girl! Its always wonderful to hear good news around here
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Becs such awesome news I am so excited to hear it!! So happy!
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Becs thanks for sharing. I’ll have to ask my oncologist about Temodar. You give us hope!
Babs
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Not sure if I did the link right or not but just FYI.
Phase 1 at NCI using Temodar with Kadcyla for prevention of new brain mets.
https://mailchi.mp/67fc520bdb2e/brain-metastases-in-her2-positive-breast-cancer-576577?e=39cfd9aaea
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Hello everybody ! hope everyone is feeling well and enjoying weekend. I come to ask for whoever has time to let me know how was your recovery history of focal radiation to brain lesion ( my case I am doing Left frontal lobe at 2.7 x 1.9 cm). I have many small lesions and for this they wanted first do the WBRT , but we will try this one to see results and then decide next step..the radiologist mention that the side effects will make symponts worsen right after... now I have some numbness on right bottom leg for about 2 months i though it was neurorp[athy from HP... they think it is related to the tumor although I only have dizziness and small headaches one in a while . I was only wondering how long would take for us to be able to be somehow normal and on our feet after treatment ...this is first rad treatment i have , I appreciate any input . Thank you . Be well.
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Sogny, I had 5 subcentemeter lesions each time and treated with Gamma knife SRS (10/17 & 4/18). Recovery for me was quick and easy, however, I had no symptoms prior to treatment, so it’s difficult to gauge. I will say that I was able to go out to see a friends band play the night of my 1st gamma and I did a 5k walk a week after my 2nd.
The worst part for me was fitting the head frame, it was scary and the needle used to numb the area sent me into a panic but it was quickly over and much easier the next time.
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thats encouraging Illimae ! I will remember your experience. Thanks.
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