Brain Mets Sisters
Comments
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Agness how acceptable is HBOT? Are you having it done in a major cancer center?
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Hi all.
Momatt I hope you get Dani's reports ok. Absolutely it's your right to have them.
I'm going to have a read about HBOT, maybe talk to my onc on Monday.
I've just found out my tumour markers are heading in the wrong direction, up by 400 over the last 3 weeks - so I'm not too confident that this chemo is working
I don't know that I have many options left. Very scary. I wish we had a bigger range like you in the States do...
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Oh no KT, I'm sorry to hear that about your chemo. I hope your onc can provide you with other options. I know from other posts that people in New Zealand have said that the choice of chemos is fewer than North America. {{{{{{{{{HUGS}}}}}}}}
HBOT does sound intriguing as far as healing the brain tissue and perhaps making other treatments more effective. I was thinking about looking into it where I am from too. Though if not covered by my government health care, would not be able to pay for it.
Will they ever recycle a chemo? I have heard sometimes that is done. Not all the time, but occasionally. I have read that sometimes they are given up on too soon, and some oncs may try a previous one. Keep us posted KT.
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KT what can I say? So you know, Dani is now on Ixempra/Xeloda/Herceptin. The first two are a known combo. We don't know yet where she is at with this combo, she did not have a scan yet with both together. Maybe it's worth a try? There are many other combinations, so don't feel that you don't have any more choices. The question is also where is the progression? Once you know that, maybe they could focus more on the area. The TM's on their own are not always a predictive way. Some people even mentioned that sometimes it goes up due to treatment, etc... so it's complicated. I'd think a scan would be the most accurate for you to know what to do. Take good care,
Re;report.I am still debating if i should send out that email, I prefer not to rattle a lot of people. It's wrong what she did for sure, but she is still there, I like it or not. So either, we try to speak to someone else, maybe in the morning I'll have a better handle on that.
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KT, I agree with Momatt. See if they can scan before just giving up based on your TMs. If you are limited with chemos, this would serve you better to know if there is progression, or as Momatt has pointed out, possibly related to all the differing treatments you have had lately. Good luck.
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Thanks ladies. My tumour markers are usually a good indication of what's going on for me, but as you say, it would be good to know where it's going on (& how much).
Hopefully though as you say maybe it's just due to treatment - either way I'd like to know for sure. Only 3 days till my appt
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Hugs KT. Keep us posted.
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KT hugs hugs and hugs
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I pay for HBOT out of pocket. Even with possible brain pseudoprogression my neuro-onc wouldn't get it for me as the hospital. I read first about it when researching primary brain cancer -- 8 months before I found out about my brain tumor.
After it was determined recently that I was having progression my one neuro-onc said it was fine to return to. I know it helps to heal brain trauma because facial numbness I had went away in July once I started it. It also totally helped lessen pain from my port surgery site a couple weeks ago.
ere's an interesting article:
The Ketogenic Diet and Hyperbaric Oxygen Therapy Prolong Survival in Mice with Systemic Metastatic Cancer
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC367398...
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Just thought I'd let you know - no more treatment for me now. My oncologist has said there's nothing else available. I've been feeling increasingly worse over the last few weeks, so now onto hospice.
I'm ok with it (mostly, it is a bit scary) I'm kind of tired of it all. Of course the hard thing is leaving my kids, hubby, family & friends. I'm hoping to get some time feeling better when the chemo's out of my system....
Thinking of you all & wishing you well
kt
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kt- I am sorry to hear this news. I wish you all the best. May you have a long time enjoying your life chemo free.
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KT aghhh, of course it's so tiring. KT coming to understand where you are at is an incredible level, but... I do have a question. What is what tipped it over? Where is the progression? Is there any clinical trials in NZ that it would make sense? Scans? Another medical opinion? You have been part of the family. If you decide to go ahead with Hospice, do check in. Hugs.
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MRI for the one sided facial pain was done, i looked at the report, it's 3 pages long. Most of the just radiated parts, just so mild decrease...so how does this thing work, is it possible to see more decrease in the next few weeks, does eat itself off, or whatever was zapped is zapped at that minute??
Besides allllll the stuff, particularly to this issue now, it says mets involving greater wing of the sphenoid bone...there is stuff really all over, but thinking that this is the area that hurts her...tomorrow we'll see what Onco will say, they better be nice about it. Absolutely she's had no breaks...I have no words...
Mara how are you holding up? Better?
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KT, I am so sorry to hear this. You have been through so much. I also hope you can have a longer time without chemo as well. My thoughts go with you and your family.
Moma TT I have been vomiting last couple of days. Sucks but what can you do. Probably a stomach bug. Hugs to you and Dani
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Mara are you talking to doc about it?
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I did talk to my at home nurse and called triage at my cancer centre. I am not having other issues ie balance, major dizziness so it was not thought to be brain issue. I was not too worried about that. Got an antinausea suppository and am better today. Even had little bit of cereal. Thanks for asking.
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kt I am so sorry and I know you've been through so much. I hope hospice clears your pain and you can enjoy your family. Many hugs and thoughts coming to you.
Mara, I do hope you feel better. I think our systems are weaker than normal so catching a bug is always a little more likely.
Momallthetime I hope you get some answers on Dani's treatment and options. All the energy you have to expend on things you shouldnt have to (getting the medical reports for one) is infuriating and should not be the case. I have no answers for you but am interested in the responses you will get as well. hugs
I finished my 12 rads treatments which were rougher than I thought with nausea, vomiting, disgusting mouth taste, and exhaustion. My bone met in my back is getting worse and causing significant pain. I start femara on Monday and iBrance shortly after. Hoping once I Do the pain will reduce.
Hugs to everyone.
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Josgirl, thanks for asking. I am feeling better. I was able to eat today. Tomorrow I will resume exercising since it helps with fatigue. I will be starting chemo soon, so want to take control.
Sorry to hear your SE, I had those too. Still tired myself, stomach is fussy too. I asked for a refill of my antinausea since the OTC kind I have makes me so drowsy. The yuck taste will go away faster with lots of hydration. Go slow if nauseous. Best of luck. I hope Femara and Ibrance clear up your met so you have less pain.
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Kt. So sorry to hear your news. Please don't give up. we have a lady on the boards Logtermsurvivor. She has lived with stage 4 cancer for 25yrs. using the holistic approach. Im sure if you PM her she may be able to give you some guidance to help you through this scary time.
We are all dreading the time when options run out. I was told mine had run out 2years ago. I tried a trial drug and although I only took it for 4months it got me back on track.
I wish you all the luck in the world. Big hugs. But please explore natural or alternative therapies. BUT DONT GIVE UP!!!!!
My prayers are with you.
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Jos how is your little girl? Did they give all that stuff like Zofran for nausea etc.. Regarding the met in the back, if it hurts a lot, would they radiate that also, could it be impending on something? Sometimes if it's very painful or it won't allow you movement that you are used to, then they radiate.
Onco said she will speak with RO re the facial pain, they are sloooowwww. She did tell us that the Clinical trial she wanted to put her on, she is not eligible for. Hmm, we kinda didn't say anything....I was thinking k, let's see how these monsters are working, and I will start heperventilating when the time comes....
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I have a one year old so I don't think it had anything to do with mothering. I just completed 15 wbr treatments and it's really the steroids that are screwing me. I can't sleep but my body is tired and it's making me craaaazy. On top of that I'm still getting chemo. Today My NP said that I was taking wayyy to many steroids (3 a day due to headaches) and she said it was probably due to lack of sleep and not brain swelling. So tonight instead of taking steroid she I made taking a t3 and an ambien and hopefully I won't wake up a 3am hungry and super anxious. I agree that the combo of chemo radiation is a flustercluck but I also don't mind chilling in all day I would get a second opinion regarding the no wbr. THEY gave me namenda to offset the short Term memory side effects and I'm still able to telework. Thanks for the advice
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Kt, wishing you all the best as you enjoy your chemo free days and precious time with your family and loved ones. You are in my prayers.
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Thinking of you as well KT. My best wishes to you and your family and friends.
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Hi,
KT - I'm so sorry you aren't feeling well. I know that fatigue as well as I've been there a few times in the past year and a bit since brain mets almost killed me a few times.
Jillian - I hope WBR killed off yourcancer and that you are able to wean off the dex soon.
Josgirl - I hope they are able to get your side effects under control. On another forum I am on a woman strongly advocates for starting palliative care early to lessen side effects and increase pain management options. It might be worth considering.
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I went last week for another brain scan with MRI and CT to look at the temporal lobe lesion. We are going to Cyberknife it on Wednesday as it is still there. I don't like having something new outside of my LM and cerebellum but whatever I'm doing stopped it in its tracks. The spot is tiny but it showed up at the end of August and was still there in October and last week. The Cyberknife I am told should be in and out with no side effects - I hope not. The RO who gave me partial brain rads is going to zap it. I like my RO team a lot which helps -- I'm glad I found them. After treatment they say 2-3 months until we take a look, but I've got other scans planned in the meantime.
One neuro-onc I consulted with suggested doing a repeat of the hearing test I did in 2014 when he saw the temporal lesion. This is what tipped me off to look into auditory processing and the temporal lobe. I had some left-sided ear ringing back in September, infrequent but very disruptive, that I thought was a benign side effect from partial brain rads that included the ears. Nope. I think it was that temporal lobe lesion. But I took the auditory processing test last week and my hearing is just about where it was during the last test during chemo -- so no changes detected and my hearing is above average-good. Phew.
Elsewise I've been doing really well. I'm tolerating treatment well, no more headaches and vomiting. With a little dex, Tylenol, water and boswellia serreta to help on days when I'm getting intrathecal Topotecan I am also tolerating that treatment well -- better than my docs anticipated.
I am doing hyperbaric oxygen treatments 1-2 times a week for several reasons - 1) to try to drive IV therapies deeper into the cancer, 2) to force the cancer not to be hypoxic (anaerobic), 3) to heal the brain. It seems to be working, at least in the last regard that I can see for which I am glad.
So, I'm feeling really fortunate for my current stability. I still have a little balance issues but It's improving all the time. I notice it when I quickly look behind me when walking that when I turn back to the front it takes a second to orient myself, same when I bend over and come upright. Going up stairs and on uneven surfaces isn't bothering me, though I hold handrails when going down stairs. When doing dance or qigong I need to focus more when I'm on the right -- but it is getting better seemingly all the time.
I'm still going for weekly craniosacral massage to help keep my treated areas of my brain open and moving. I really think it helps a lot. I am hoping it will aid my body in clearing out dead cancer in my cerebellum and spine and help get chemo drugs in deeper.
Thinking of you all.
Ann
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Agness, thank you for the update on yourself. I always am interested in what you are doing. Certainly sounds like you are doing well and I am glad you are stable as well. No doubt any small balance issues should improve for you.
Myself, not doing to great. Am completely physically exhausted. Am almost 7 weeks from finishing WBR. Was improving up to a point, less exhausted, eating normal. Unfortunately, spent last week sick to my stomach. CT to brain ruled out swelling, but this has really set me back. I am back to not wanting to eat (I do eat but really hate to). Really getting tired of this. Cannot find the energy to exercise either. Couple that with an interested family who wants me out and about instead of staying at home. I am stressed. Not doing well and starting chemo too, just want to crawl in bed.
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Mara did your doctors give you any idea of what could be bringing this on? So sorry you are going through such difficult time, you went trough so much, so it could be that the whole process is just hitting you now. Maybe you could just sleep for awhile, just take it easy, maybe in a day you will feel different. Seems to me, your family does not want to see you give up on yourself. How can we help you?
Ann so glad to hear you are doing well. Dani had Cyberknife done already, for some odd reason her RO says they don't do Cyberknife often after it had been done. She did it at least twice. So are tey going to target the lesion in the cerebelum or the one right outside. And can I ask you, what does small lesion mean? She has over 20 maybe 30 lesions, they will only do the ones that really hurt or bother her, and watching the one in the cerebelum, one that was right outside the cerebelum, that one was done. We still don't have an answer for the facial pain, I guess tomorrow we should know if they will radiate anything due to the pain.
Jillian thanks for the info.
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There's nothing physical really bringing this on. I believe I am still in the throes of recovery from wbr. Some people who posted their experiences seem to indicate a couple of months before their SE;s peak ie fatigue, lack of appetite. I don't know how long I have to wait, but really need it to subside soon. I sleep well. I do eat, have good nausea meds, so physically am taken care of. I just need to know there will be some recovery from this WBR stuff so I feel it was worth it. I know there is a measure of feeling depressed, though not convinced that is the whole story. I am going to try exercise perhaps tomorrow, see if any endorphins will help.
Thanks for you caring Momatt, just getting these feelings out helps some. I hope Dani can get the right answers. Am not sure what would be defined small as far as lesions. Surprised with that number of lesions, they don't want WBR to wipe them out but am glad they don't for her sake.
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So ladies I started Ibrance yesterday along with femara and will get my xgeva and 2nd lupron shot Monday. My doctors downplay side effects but I looked at the Ibrance forum for info and found some good stuff. Also I had a blood test to test for cancer mutations and while the plan was always Ibrance the test showed that I had a mutation of my CDKN2A gene which Ibrance specifically targets so my doc is extremely happy about that. Anyone else did this test - mine was Guardian360 Tumor Response Map? On so many pills but whatever. My new normal
Mara sorry you're feeling so bad. My targeted radiation was rough so I can only imagine WBR but I know they say three months for radiation side effect so to wear off. I have to take my own advice to take it easy but feeling like crap forces you. Sorry you're feeling this way but it should get better.
Agnes's you are such a source of info I really appreciate you sharing and I hope the cyberknife is easy.
Jillian, dex sucks but was a big help for me during rads. Hope you can wean off soon.
Momallthetime, best to Dani. I think of her often since we are in similar situations with young kid (s) at home.
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Thanks josgirl. I am starting to feel better. Got some good anti nausea so the eating is coming along. I know that WBR was all I had been offered and I took it. I will be fine with it as time goes on. I am improving little by little.
Glad to hear that Ibrance will work well for you. Can't say I have heard of this test before myself.
I have started my own chemo now to keep any cancer from showing up from the neck down. I get Herceptin/Perjeta and will get Taxol tomorrow. I only plan to take taxol a couple of times, since there was never any cancer from the neck down but in the breast, I feel good about dropping the Taxol asap. We just had to add it to my cocktail or my government would not pay for the Herceptin/Perjeta which I need. Had a great nap in the cancer clinic today. Was a long appointment, plan to sleep there tomorrow too. Quite refreshing if you ask me.
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Josie glad that you have a plan. Yes, my daughter had this BT done, she had previously done a bone biopsy Foundation One with pretty much the same results, but bcs of progression they checked it a yr later with Guardant 360. Ibrance is suppose to be pretty good. I was on that thread, even though she is not HER2- now, they had thought that it could help, but it didn't.
I am quite mad right now, she had the Orbital MRI done last week for the facial pain, waiting and waiting on what to do next, then i emailed RO and ask to let us know, they did not respond. So last wk we called anyway the office because my DD has major mouthsores, and NP said that about the Rads they would still wait till she is good with the mouthsores, because she should get to herself due to so much Radiation. Whatever. And they were gonna see what's with the scans, blah blah,
today at her usual infusion day, NP of MO said, oh you could do it, you should set up an appointment with RO. What they could not let us know before?? You cannot really get to speak with RO or MO, it's email and it's when they wanna answer. I am ready to explode, but I have to hold myself back because I don't wanna make them upset. Also, it's different when I am the Mom speaking for her, I don't want to get her to worked up either, because if she gets mad at them, she won't trust them.
Mara how are you?
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