Brain Mets Sisters
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Hello, I have a quick question for any who have had SRS (or targeted radiation) for brain mets. I had six treated earlier this year and one had fully responded but needed additional round just on that one. When found it had grown somewhat and had fluid so Dexamethasone (steroid) was prescribed.and moved forward with getting treated. My question for any either on initial DX or a follow up treatment was assuming you got Dex, what was the dose and how long were you on them?
In my case for some reason there were various delays from DX to completing treatment and so have been on them for about 40 days weaning off now and effects have been very difficult mainly due to sleep deprivation. I have been living well with this DX for three and a half years now, but have deteriorated significantly physically because of steroids and lack of sleep. I am 62 but feel like 90 and for several weeks have barely left the house because I have to retain what bit of energy I have for essentials only because I live alone. Have to drag myself up holding two hands on rail and have difficulty getting out of a chhair which I thought was due to fatigue and lack of mobility but apparently side effect of the Dex. From what I've learned it sounds like 2 weeks is about average to get through the treatment and then wean off so 4-6 weeks has been excessive. Any input appreciaited.
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Part of it COULD BE the cancer.
I AM. SO WEAK AND CAN BARELY HOIST MYSELF OFF THE DAMN. TOILET. I cant use my left leg anymore. I had brain rads almost 2 years ago.
Sorry this is not encouraging.
L
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very quick question - how long before one receives a report on a scan?
Amp47
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It varies by clinic and oncologist.
Fortunately, I usually get mine the same day as long as I can get the scan(s) themselves done before noon. First, the radiologist has to review it, write up his/her report and compare it to the last scan(s) you've received to look for progression or stability (no significant changes), then your MO has to review what the radiologist has done, write up his/her comments, and either email them to you, or call you on the phone.
Otherwise, it could take a week or more.
L
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Dorimak, there's a good article at the beginning of this website that talks about "cancer-related fatigue," and what you can do. Just scroll thru the articles until you find it. You can either play the podcast or just bring up the transcript and read that.
L
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I have changed how I try to build up stamina nowadays. I found that long sessions of walking did nothing for me energy wise.
What I find that is working for me right now is 5 mins of high speed treadmill walking to jack up my heart rate several times throughout the day. This can be done while using a treadmill or walking on the spot. I use the treadmill more but also march on the sport. Even two minutes throughout the day when feeling tired helps boost and push away grogginess. I also have started eating smaller meals more often as a way to fuel up my energy tank as I think of it. As long as I am doing this, I get through the day. I am currently on a treatment holiday ordered by my onc to build up my stamina as I was exhausted to the point of being incapable of leaving the house. That was unacceptable. I will resume treatment on august 14th and will try to maintain this to combat the eventual fatigue. The only reason I stay on both drugs is that I am NED from the neck down and want to remain that way as long as possible. If I am still exhausted, I will ask reduce the dose or remove the pertuzumab. I live alone and need to be able to look after myself. I am uninterested in having family or too many medical interventions. My QOL for me dictates the desire for independence and not needing to be in bed all the time.
The heart rate can also be raised from sitting in a chair and punping arms and legs up and down gently. The heartrate increase would also help. Obviously check with a doctor first. If legs don't work, use arms like you are walking. It could even be done from lying on a bed. I looked up a lot of this for my mother when she lost mobility.
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Amp47, at initial diagnosis of brain mets, my MO called the morning after my MRI. For routine follow ups, I am typically scheduled to see RO within 2 days but like Lita said, it varies. If you can find the sweet spot between anxious and pushy, hospital staff will usually expedite results. Good luck!
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Mara, MO has put me on a chemo holiday, too. So weak w/chemo fatigue, I can barely take a shower or hoist myself off the toilet.
I do try to exercise every day; It helps you psychologically because at least you're not sitting there in the recliner like a baked potato. I have been told the longer you're on chemo, the worse it gets, and I've been on chemo for over three years now. You can still do leg lifts while sitting in a recliner and also lift free weights. I try to walk up and down the hallway, too. I don't go outside that much anymore because my left leg is so weak. It's gone out from under me, and now I have to walk with a cane or rolling walker all the time if I don't want to take another face plant.
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Lita, that is more than enough activity. My hat is off to you. You have done much more than I could have done under more difficult circumstances too. You still inspire me.
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Hello I haven't read this whole thread, I'm sure this has been asked but chemo brain is making comprehension difficult.
Did anyone have systoms of brain mets before they were found by a scan?
Does Nuclear bone scans show brain mets?
If you had systoms what were they?
I've been having headaches and I've made myself paranoid.
Thanks to all who respond
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Snooky, a headache that would improve with ibuprofen but kept returning for several days was what prompted my brain MRI. I had one at diagnosis, which was clear but since HER2+ likes the brain, it was scheduled without delay. The headaches were caused by the pain of my radiated skin (rads to breast), which I had just completed but the MRI did find 5 tiny lesions, which were successfully treated with gamma knife. My neurologist and neuro rads onc both say the mets were too small to cause symptoms, so the headache was lucky. There are many reasons to have headaches but I would not hesitate to have the tests to rule them out of find them before they become a real problem. Good luck 🙂
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Illimae…...I one month ago, I finished 10 rads to my spine and I haven't felt right since. My head feels like it did years ago when I would have bad sinus headaches. Like it's in a vise and stabs here and there.. The pain isn't bad just scarey. I have an ONC appt on Mon I will sure bring it up.
I also just finished 6mos of taxol and chemo brain is still hanging around.
Thank you for the info. Good luck to you too
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SNOOKY.
I had headaches, opaque gray patches in front of my eyes (I'd see these rainbow auras right before the grey patches showed up), dizziness, I'd hear this WHOOSHING sound in my ears, and my balance was off. I brought this up to my MO, and she scheduled me for a brain scan MRI in a matter of days.
Per the MRI, I was Dx'd with more than 20 brain tumors (they stop counting after they hit 20). Had Whole Brain Radiation almost 2 yrs ago, and I'm still here.
L
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Thanks Lita, I'm definitely asking for an MRI at my Mondays appt
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Hi Dorimak, Sorry for the delayed response, I have been out of town.
I had SRS to one small lesion on the brain and Dex in Sept 2018. I only had the Dex during the month I had the SRS to minimize swelling. It was a low dose. I got clear a MRI Nov 27, 2018.
I also had 13 rounds of SRS in October 2018 to my Left rear fifth rib due to a lesion there. I did not do Dex with that. It took me several months to recover my energy at all. It was very frustrating.
That was also clear Nov 27, 2018. But the fatigue hung on until well into March.
However, less than a year later-July 2019 I just got back from 3 weeks of travel where I had enough energy to do pretty much everything I wanted to do. I flew to Seattle to see my sister. Then came home. Then drove to Sedona and back for a spiritual retreat.
Baby steps and persistent getting up and going when I was able were key I believe. I also had to take care of my Grandson Jan-June,who will be two in August, because his mother was not able for a while. She has him back now.
Snooky,
I did have a week of extreme dizziness where my eyes would not work right in July 2018. They thought it was nothing but did an MRI in case...They found one small lesion in my brain in the area that controls the eyes... I did not have headaches. I had SRS to that spot in Sept 2018 and I have been clear since then.
I had headaches and vision issues in April and they did an MRI and it was not my brain. Thank God!
I have new scans 8/1/19. I am not expecting any new areas.
Everything is clear right now.
But I think we all get that nagging "What if" feeling...
Love and hugs to all
Angi
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hi there, not sure how to PM you as I’m new to the site. My mom has had SRS to two lesions and was stable for 2 years post but now has more lesions and they want to do WBR instead of Gamma Knife. I’m getting married in May 2020 and I want my mom to see at least one of her children get married. Her appt with the radiation oncologist is on thursday. How much say do we have ? We aren’t located in Edmonton, Alberta, Canada.
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I was not given the option to only treat the area where my tumour was. It was 10 cm and I really did not want WBR but went ahead with it.
The WBR was hard for two reasons, I was very sensitive to steroids in that I was very depressed and moody. The other problem was my brain was inflamed. It took me a few weeks to get back to feeling more normal and able to start walking again. I have not looked back since. I also lost my hair on top of my head. I happily wear wigs now and they look better than my actual hair would have.
WBR is portrayed as being this scary thing but quite a few of us have been through it and come out the other side and doing well. My met was discovered 3 years ago and I am still going. Had spot treatment in 2018 but no side effects from that.
You can always ask if they can just treat the mets themselves but there are variables that may prevent that. Obviously getting just the spot treated would be ideal but if there is nothing offered but WBR, that is a viable and good option. Also, you will not come out different than before unless you are going in with other issues. There are risks but not treating is also much riskier. Good luck.
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Hi Lita,
I have the same symptoms and for a long time I never suspected that I had fever and when I thought of checking my temperature, I found out that I had fever,I started using using cold packs on my forehead and include my eyes for just a few minutes and it helped relieve the pain including the sound in my ears
Could it be fever?,I never suspected of fever because when I tried to feel with my hands,it felt normal.
JanetMara
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Asking again for anyone who had SRS. I had one lesion with a little swelling but no symptoms. Were you put on steroids (Dexamethasone) and was it for symptoms? How much dose and for how long? If you did, did you develop moon face and how long did it take to go away.?
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Thanks Angit for additional info. At my apt on July 29th told ONC about heads. She asked if my vision was bothering me, I said yes and she has ordered an MRI. So, it's scarey but better to know. Thanks for your input and thank you Lita.
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Dorimak, when I had to have treatment to my original tumour site in 2018, I was given 2mg of dex during my treatment cycle. The lesions were treated over 5 sessions. I stopped the steroid within a couple of days after the treatment was done. It was such a small dose, I had no issue. I did not experience side effects or weight gain with the low dose.
When I had to have larger doses of steroids that were 16mg and more when the brain met was discovered, operated on then whole brain radiation in 2016. I did experience slight rounding of face, swollen feet and water weight gain. I was also on them for basically a couple of months on the really high dose. It's the higher doses that can really impact the severity of side effects of steroids as well as length of time they are taken. Low dose steroids should not be as severe if you are only having to take them during the treatment period and not ongoing. I don't have experience with the low dose over a long time period.
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Dorimak,
I had SRS to six lesions (all smaller than one mm) in February. I was not sent home with steroids. Within a couple of days I developed weird headaches that seemed to move around my entire head. I was given five days of Dexamethasone 2mg. It solved my headaches without any apparent side effects. I had another lesion treated in April and did not require any steriods.
Wishing you well...
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hi there, wondering if anyone on here has or had “dural” tumours. My mom is scheduled to have WBRT in a month.... they want to to another MRI and spine MRI to be sure that’s what they are..
Thanks
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Bonnysgirl, check out posts on my wife's cancer to her dura. According to her MO the WBR was supposed to have gotten it all. Also, brain surgery removed a good portion of the cancer areas. Sorry if mytyping might be off as I am in the hospital room with my wife using a tablet. Everyone, brain surgeons, radialogists, etc all gave her just months to live with her LM cancer. My wife's MO was more optomistic. Sorry, nospell check on a tablet.
Mike3121
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oh no
no one told us she only had months! I’m getting married in May and it is so important that she’s there for it.... why are they even offering us whole brain radiation?0 -
They are probably offering WBR because there isn't many other options. WBR does work though. Surprised they are waiting a whole month. Cancer can move fast, especially if it's TNBC.
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I only had one large tumour in the dural layer of my own brain. In my case the reason given was simply to try and avoid the cancer invading my brain quickly. I have the most aggressive, fastest growing breast cancer and without it, would have likely had massive growth.
Three years on from the WBR has likely saved me from developing more lesions. I only had a couple small spots develop where the original tumour was. That was spot treated and everything is still shrinking.
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I was wondering if this is a common side effect of brain surgery and WBR. I've discussed my wife's condition plenty of times above. Recently she spent 6 days in the hospital for UT infection. Not dangerous but her ANC level was down in the 300's. She got better and left the hospital with a 2680 ANC plus all her other things tested were of acceptable levels.
Trouble is, after she had all that brain surgery then WBR, she was very weak and tired. She could hardly get out of bed. Then comes this urinary tract infection and she was really wiped out. She's been home almost a week now and she's still exhausted and seldom gets out of bed. When she does she hobbles along and needs a walker. She hardly eats at all except for a carton of Boost now and then. By the results of her latest blood test everything is in the green and she's back getting her Halaven infusions. What's going on?
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Hi Mike, I can give you my own experience as I was similar to your wife without the UTI.
I also went through brain surgery then WBR after. When I was off my steroids, my body finally crashed. My brain was inflamed and that affects a lot. I did not have an appetite for a long time, it was weeks. It took me from Aug/sept until Nov of that year to recover My main symptoms were exhaustion, lack of appetite and odd bouts of dizziness. My balance was worse than usual as well. I also underwent a major depressive time as well. Very sad and wishing I did not treat it.
After a good month of the not eating, exhaustion and depressive mood, I gradually began to be able to eat a little bit. That spurred my recovery very quickly. As slow as it took me to recover, the recovery was faster. I gradually was able to eat more, gain strength and start walking again. Sleeping became easier because of my increased activity and it was finally restful.
Other than the UTI, what your wife is going through is fairly common and is a miserable part of having to radiate the brain plus trauma. She is also undergoing her infusions which may delay the recovery. If her appetite does not return within a month, mention this to your onc in case she needs to have a rest from infusions to try to build her strength up. You may want to ask sooner than that even.
I am on my on infusion time out until Wed because I was so exhausted I could not easily leave the house so that is why I am suggesting you mention her weakness and lack of appetite which will get in the way of her gaining some of her strength back. I will say the rest has been helpful to gain a lot of my strength back.
Good luck to you both.
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mike- I’m sorry to hear this.
I did not have WBR butbhave gad 5 different sessions of gamma knife to over 50 lesions.
I can say that this past week I had my normal chemo therapy treatment ( taxol/herceptin/perjeta) and the very next day had a GI procedure at the hospital to cauterize some bleeding vessels in my stomach. I have been very week and tired all weekend. I have spent every minute I can in my bed or on the couch. I had to fit in s soccer tournament and birthday for my son and I am out of energy. It is about all I can do to get up to go to the bathroom.
I think it all adds up. My body as well as your wife’s have very little reserved on s good day. Her UTI took all of that away. I hope that in a few days she will feel better and have more energy.
Hugs to you as being the caregiver/spouse is harder than being the patient ( I think).
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