Brain Mets Sisters
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Well that was fast...ok they aren’t going to give me dexa unless I start having side effects, headache etc. Here’s the problem now...my appt. is at 2:00 on Friday, so they are closed over the weekend!!! Am going to ask for a contact number for the weekend
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Gracie, both of my Gamma’s were on fridays, I was released after observation for an hour or two and had no issues afterwards. They’ll just tell you to go to the ER, if anything comes up.
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Ok that sounds better than what I was thinking Mae😊 Am just letting anxiety get the best of me I think!
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Gracie, just to echo what illimae said, my gamma was also on a Friday. No problems. I think the longest part of the day was waiting for my turn in the machine. There were 3 other people ahead of me. After my treatment was done, I was released 2 hours later and spent a fairly quiet weekend at home. Good luck to you!
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Daily low-dose Dexamethasone/Decadron (under 1.5-2 mgs) works wonders for me. It has kept the two largest inoperable brain mets deep in the cerebellum (4 cm X 2.5 X 1.5) from hemorrhaging again. Steroids help my dizziness, the pressure behind my eyes that causes vision auras, my ear-whooshing, my dreadful headaches and other aches and pains so I don't have to take opioids and other crappy analgesics besides a little cbd/thc to help me sleep at night. I don't take Decadron the day after my infusions (cuz they always pre-medicate me with EIGHT mgs, and I feel I don't need to add any to it the next day).
To each his own...I know some people say steroids are really bad for you, but what's the WORST THING that could happen to me now at this point? I'll get STAGE IV TERMINAL CANCER? Well, s*&t, I already HAVE that!
I have more than 20 brain mets; it's now in the BONE MARROW in my right hip/femur/pelvis; it's in my liver and pancreas with adhesions on the abdominal wall, the uterus, etc.; all up and down my spine, scapula, sacrum, ribs, and in my pelvic bones, so even sitting can be painful. So I don't give an eff what I have to take to keep myself moving with my rolling walker and cane.
Like my Palliative Care doc says (sorry if I'm repeating what I've already posted months ago), "With all your mets, above the neck and below the neck, you could go in six weeks, six months, SIXTEEN months, or in LESS THAN SIX MINUTES if one of those big boys in your brain start bleeding again."
So I'll continue to take my chances with steroids, and I'm NOT going to scare anyone off from taking them if they really need them. If one chooses NOT to take them because of upsetting SEs (and not everyone gets them), that is their choice, and I totally respect that.
Lita57
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Thanjs Lita. I just don’t want to end up in the ER again with such bad stomach pain. I also have colitis so I’m sure that’s why it bothered me so much. I know lots of people who have taken them with no problems. I think my anxiety just stems from that one experience.
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Hello Friends! Z - I'm so glad that everything worked out for you. Gracie, I have no advice, but I am with you.
Question for everyone - I have finished my WBR (last Wednesday), and have developed a fever. It sent me to the ER last week (101-102 degrees), they could find nothing wrong with me. They gave me antibiotics anyway, and some fluids (which I did need). I still have a low grade fever (99.9). Has anyone else developed a fever from brain rads? My radiation oncologist said that it doesn't have anything to do with the radiation, but I don't believe him because it started right after my first treatment.
Also, for any of you HER2 ladies that developed brain mets....did your MO take you off of Herceptin right away and did you start something that passes through the BBB? My MO wants to switch me to Tykerb, but I really don't want to do that. Herceptin has kept me clear from the neck down, and it has very few SE's. I would like to stay on it, and hope that the rads killed the buggers. Any advice?
Cheers
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Gracie, truth be told, I went to see a friends band play at a bar with the night of my first Gamma. I also had a few cocktails, lol. No problems at all.
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KKrenz,
Writing for my sister, her brain mets were discovered early November last year. She did WBR treatment through early December. I have no recollection that she had a fever, though she did have strange burns show up on the tops of her ears a few weeks later. She continued on Herceptin until last week. Her most recent brain scan showed about 9 tumors, all growing, so her doctor has recommended switching to Kadcyla. He indicated that there was some research to suggest it crosses the BBB. She will get her first Kadcyla infusion tomorrow. If it is successful at shrinking the tumors, particularly the one sitting above the spinal fluid aquaduct (?), then he will feel more comfortable doing some type of targeted radiation. She is still NED from the neck down., which is why we asked about the possibility of doing intrathecal herceptin, but he felt that it would not be as helpful to her because of how deep in the brain most of the tumors are. She just turned 36 and has 3 beautiful little boys so we continue to pray for miracles and rapid advances in treatment options - for her and each of you. Good luck!
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Mae, did you take Dexa though? Now I’m just freaked out and crying because a friend of mine was telling me how worried she was because I’m not taking it and I’ll be at home all weekend alone and what if...you can guess the rest! Jeez I hate being scared!!!
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KKrentz- I have been on Xeloda and Tykerb for my brain mets on and off for several years. Just started back up on Tykerb after developing brain mets while on kadcyla after previously being NED.
You can PM me if you want to know about Tykerb. The combination of Tykerb/Xeloda kept me NED for several years. Will know if it’s working on my brain mets in Juky after my MRI.
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Dizzy, sending good vibes to your sister.
Gracie, I was given a single shot of dex into my port after the first Gamma (largest lesion was 6mm/0.6cm) but I was told it would not be necessary the 2nd time (largest lesion was 4mm) because it was too small to cause any swelling.
I had no issue with the steroid but I know some do.
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I wish I had a port. I will, but not yet, and the radiologist won’t put in an iv to give me the steroids. He said they don’t do that
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Gracie, please ask your docs why. Both times I’ve had Gamma, they’ve either accessed my port or put an IV in because an MRI w/contrast was done just prior to treatment. They may not like being asked but they should explain everything to your satisfaction, regardless.
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My wife has been getting stronger headaches/migraines in the last couple of weeks. She has always been prone to them bc she hit her head a lot throughout her life (when she got a CT during lymphoma, they thought she had brain mets but it turned out to be scar tissue). Her onc tends to downplay symptoms as cancer is low grade, Her2- but I wonder if we should push for a brain MRI just in case. GP suggested it might be from medical menopause showing up as she is not having any other major symptoms like hot flashes. He also suggested looking into other causes like high blood pressure. Any thoughts or opinions are appreciated.
Daniel
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I’ll ask the nurse when she calls this morning Mae
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SusanF thank you so much for sending the message re: Dani. She was truly an amazing young woman. I do wanna write about her and some details, i have another appointment for follow up breast MRI with my other daughter, so i'll get back here soon.
But, my 2 cents = Gracie, it's not a must the Dexa, if you feel you need it, i'd think they wanna rush you out of there, that's the reason they don't want to give you an IV etc...it's more work, maybe your Onco could get involved etc...if that's the route you wanna go. And you could take a minimum amount.
ZAR!!! i did not know you are doing it already, how great for you!!!! And of course you figured it all out, and you got on top of the issues. You should have a tshirt saying do not mess with THIS woman!!!. Take it easy.
Daniel yes, for sure for your peace of mind, ask for a brain MRI. It's not radiation, and you have a right to be concerned. You should think it's probably a lot of other things, but it's good to be sure. You could get a prescription from your PCP or any other doc if your MO refuses it. But they should not...ANd get the report in hand.
KKrenz, i also think Herceptin helps. Dani was always in toruble, but i think that after they took her off Herceptin things really started building up, that's of course just our experience, it's not a type of chemo that they should want you to be off. And Gamma is quick, so maybe you could work out the dosages of Herceptin before and then wait a few weeks...it could be doable.
I'll get back to you wonderful people.
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Thanks Momall! I talked to the rad’s nurse this morning and she suggested my primary give me a prescription or I call my onc. I asked what milligram my primary should call in and she refused to talk to me further, so I have a call in to my onc’s nurse!!! It’s turned into a real cluster-you-know-what!!
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So we are thinking of going to Mountains this fall, will the altitude cause issues with my brain Mets.
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keetmom, I don’t think so. We can fly with brain mets and I’ve been out to my cabin several times since brain rads (elevation 7,000 ft), no problems. The terrain might be challenging if you have SE’s like dizziness but other than that, you should be good.
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Ditto what illimae said. Since my diagnosis I've been to both Rocky Mountain NP and Olympic NP. In Colorado, we were consistently at 9,000 feet, or above. No problems at all.
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Just went to Yosemite / Tioga pass last week. Was up to 10,000 ft at the pass, and no problems....just could tell that the air was a little thin, that's all.
L
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Done and home! Monday and Tuesday will be a breeze. Now hoping for no se’s because I took no dexa
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So glad you're home, Gracie!
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Thanks Muddling Through. I seem to be ok this morning. No worse for the wear as my mom would say
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Hi everyone.... I completed WBR about 6 weeks ago. I notice a slight tremor in my right hand that makes writing difficult. Anyone else experience this? Also, it's sometimes difficult to focus or concentrate - I feel restless, a little jittery. If these sound familiar, have they improved over time? I've not taken deca and my follow up MRI looks good - nothing new juststable and resolving. Just curious.
AZS
Cross posted under stage IV topics.
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Hi Everyone,
I've been meaning to introduce myself for some time and seeing as I'm waiting in hospital for a crainiotomy I have some spare time on my hands. I've found all of your posts so helpful over the past few weeks.
I'm 34 and was diagnosed with TNBC in November 2016. I had a lumpectomy and axillary node clearance with 2/13 positive nodes. Things had been going well until my latest checkup where I had a swollen lymph node on the opposite side. A biopsy confirmed it was cancer. Several weeks of tests and more tests confirmed a single brain met as well, between 2-3cm. My breast surgeon originally thought they might do gamma knife but after the hospital reviewed my case on Thursday, they recommended surgery due to it being the single site, the size and the depth.
So here I am waiting for surgery Tuesday, it's a public holiday here tomorrow so I just have to wait around in hospital. I've had to travel 4 hours from home, so only my husband is here and my son is staying with my parents. A but lonely and a lot scared
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Hi Allybee,
Best of luck with your craniotomy. I found the recovery from my craniotomy to be easier than the recovery from my mastectomy. I was truly shocked how good I felt after brain surgery! I hope you have a similar experience.
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We’re all there with you. Prayers and hugs.
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Ally Bee, they talked to me about the possibility of surgery but opted for cyber knife instead. Will be thinking of you on Tuesday and praying that surgery goes really well.
So, I am not one of the ones who gets by with no dexa!!!! Woke yesterday with a headache but was able to control it with norco. Until about 7pm. I had a coughing fit and oh my gosh! My head hurt! And painkillers didn’t relieve it, so I followed instructions and called in. Ended up in the Er, and long story short, they started me on 4 mg of dexa. Will take it until after Tuesday. Doc said he probably wouldn’t have suggested it but it seems I had a little inflammation around the lesion beforehand so they thought it was best. Shucks!
Hope everyone has a nice Sunday
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