Brain Mets Sisters
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Hi everyone,
I have a question. Do you know if the dex steroid can cause tremendous swelling?
My mothers legs are so swollen. THe doctor put her on lasix to help but it isnt.
She is not doign chemo. Only WBR
mets to bones/liver/lungs/brain
thank you
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I'm so sad to hear about Rohm.
@imadaughter: My daughter Suzanne swelled up overnight while on steroids for WBR. We took her to the local emergency room and they only wanted to give her an enema!. Wisely, she refused. They also tried diuretics but no luck. She finally just gradually deflated, over about a month. Not a happy time for her.
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Thank you sbidalia!!
Her arm has been swollen ever since she was diagnosed and they said it was from the nodes draining.
It has just been the past month that her legs have swelled up. They started to before she started the dex but now they are 10 times worse. So I wasnt sure if it was from the steroid or if it could be more lymphedema.
She goes to the doctor tomorrow though so I guess we will see again.
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thanks for the news Hopbird. I had a couple very tiring days.. i was almost sick and i don't 'get sick'.
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Apple...I don't "get sick" either...did they give you compazine? I have a prescription but I only "got sick" once...and because it wasn't expected I didn't take compazine after they gave it to me. By the time I knew I had a problem it was over! That was one time in 9 months of weeklys, so it wasn't a biggie! Especially cause it worked so well! I feel it's important to tell people it worked without taking the medicine every time..cause that scared me!
Imadaughter...steroids can do all sorts of things...I'm glad your mom is having the Dr. make sure it's not lymphedema, though. Just curious why she isn't getting treatment for anything buthe brain met...is she going to do that later?
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great news ladies my mri showed no new mets and all but 2 are gone an they have gone down 1st mri that didn't show new ones wishin u all wonderful week
love and blessings chris
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Great news braids!
Hope the little buggers keep shrinking!
Lx
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You did good braids!
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Hopebird,
She was getting chemo since the beginning (stage iv off the bat) but she has been thru numerous chemos and the latest one (gemzar) which is a weaker chemo was putting her in the hospital with low counts, low platelets, low bone marrow.
They had to keep putting off her chemo because she was so sick. So she decided to quit chemo and just pray that she is healed. So if was about a month after that she was getting symptoms like dizziness and word finding, etc that sent her to the hospital where they found the brain mets. So we were told that radiation is to relieve symptoms and give her a better quality of life for the time she has left. (no one has spoke of hospice yet though) So now other symptoms are popping up like the swelling. I am just trying to get a handle on it and what to lookout for or what to expect. She knows she can always choose to go back on chemo but I am so afraid of her cancer running rapid since she is her2 + and she has been off so long. My sister is the more emotional one and I am the one who is more of the "medical" one that keeps tabs on all of her stuff for her.
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Imadaughter, I sent you a Private Message.
Be well,
Binney0 -
I am so sorry to hear about Eileen (rohm).
My condolences to all who loved her.
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Hi my mum had WBR for 5 days a month ago but she is really tired now is this normal? She started on an oral chemo for the liver can't rem the name, I hate seeing her so tired x
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Pauline, sorry I did not do WBR. Many have perhaps you'll find info in the previous notes and others can answer. It seems to be a rough but temporary time.
I'm here to say: something is missing from my brain. WOW! Its like having blackouts! DH gave me a credit card, I had no idea where I put it. He found it, and that's good but I really fear not having control over my own life, especially money! I want my own money! We always had separate accts and my disabilities go directly into my debit acct. So far, I haven't screwed that up. Having none of my own money will be the end for me! (such drama)
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Braids, So glad for you!
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Next Mon I start my WBR. Had mask made this mon and 'dry-run- today. Everyone was so nice. I'm sure I'll feel comfortable. I've spent the last couple of hrs reading through the postings here to get to know everyone. It sounds like steroids are the biggest source of side efforts; I feel lucky to not need them. And, I was so sorry to hear of Rohms passing. What a great group of women. Thanks to each of you for your support.
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I was shocked at how comfy the mask is. I got two; one for linear accel to brain and one for eyes. I gave the first one to an artist friend and recommended she could use it as a fake pregnancy with my facial silhouette poking out of the thin shirt or dress.
Uopal, as an observer, I warn you to be patient. It sounds like WBR churns out weird SE's but they clear up.
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Kathy, that's hilarious about the mask!
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Kathy, that's hilarious about the mask!
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Kathy, that's hilarious about the mask!
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K-Lo hope you get things together. - I want my own money too. My hubby is such a cheapskate - he called the bank and cancelled my checks saying i could just use his checks.. that would save us 6 dollars.
aarrrhghgh
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Had 2nd of 15 wbr today. Still feeling good. I know side efects will start eventually, but good for now.
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Glad to hear it, Pal. Good attitude cant hurt either.
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Mom had her first brain MRI since treatment with WBRT and all but 3 of the 25+ tumors are gone. It's great news. They were quite radiosensitive. Plan is to watch those 3 for now and repeat brain MRI in another 6-8 weeks. I think that the Dana Farber has some new her2 zapping stuff similar to herceptin that crosses the BBB that they would use before gamma knife on those 3 lesions. She is on the perjeta/herceptin/taxotere road and hasn't been scanning since starting but we are hoping for good news. She had a small lung met and adrenal met and was otherwise clear. She has a pretty bad intention tremor, anyone else have that with WBRT? It's how we figure all of this out but now it's worse with treatment. Also, anyone on anti-seizure meds for prevention if they've never had a seizure? I think it's causing some of her s/e. I'm arguing with the docs to take her off of them since she's never had a seizure and the standard of care is to NOT have patients on anti-seizure meds if they've never seized.
thanks for the positive thoughts.
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Hi all
I had my MRI scan yesterday and they found no new mets + (happy dance here) all the original ones are shrinking, even the biggest one in the cerebellum is showing much less swelling along with significant shrinkage - something they thought was very unlikely 3 months ago. I am so glad to prove them wrong.
Meanwhile I am in the Marsden being treated with blood thinners for a pulmonary embolism. Didnt know anything could hurt so much! Yesterday i was on so much morphine i was seeing may cat chasing a rabbit round the room! I 'knew' they werent there but i could still see them - very strange but at least nothing scary! Anyway I came in early hours of Monday morning. I shall probably be able to go home Friday.
Apparently they need to get my pain relief sorted, the blood thinners have to have a chance to take effect and I need to be off the oxygen. They also have me on antibiotics because I have some kind of infection which they can't identify.
I was taken from the marsden down to the Cromwell by ambulance for my MRI scan which was exhausting but now I'm so pleased I did, it seems like the only good news I've had for days (but it is VERY good news 😊)
Love mxx0 -
Hope all goes well and you escape for home on Friday. Very pleased for your scan results.
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Hi all,
It's been awhile since I posted & I thought I'd say hi & catch up. Tillycat glad to hear about you MRI, definitely worth a happy dance:) I too had a brain MRI recently & there was no sign of of the cancer. It had disappeared! A miracle, yes. I still don't believe it. Good news makes all that we go through seem worth it:)
Have a great week everyone.
-Malinda xxx0 -
so Tilly, the pain is in your chest? Did you feel very scared, short of breathe?
I didn't realize that a Pulm Emb would continue to hurt but it makes sense. I guess you'll go home on Lovenox? I did that last year for arm clot. Talked them into letting me go on coumadin enventually... hope you get there someday,.
What a strange place to be so happy re MRI, so wiped out from recent PE>
(((((Tillly)))))
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Tilly sorry to hear about the blood clots too. In Feb I went to the ER for blood clots. It was hard to breath, I kept coughing, & vomiting. They found MANY blood clots with a chest x-ray & I got to spend a few week there. The ER Dr had the nerve to tell my family if they did something I might die (because the clots would be losened) & if they didn't I might. Not the most fun so I feel for you. I was finally sent home on coumadin too. Doing much better now & I hope you will too. Hugs to you. -Malinda
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Yes it is a strange thing that you want to do a happy dance when you have just been though something that could have (and still might) kill you, but I'm not thinking about that.
This is how the doc explained it to me -
I have two clots, one is at the top of my right lung and although it is the more dangerous of the two it isn't causing me any pain because it isn't pressing on my pleural layer. This is the one that is reducing my lungs effectiveness and this is why I need oxygen.
The other is smaller, has less impact on my oxygen levels and is down at the bottom of my left lung. it is this one that is causing the pain because it is pressing on the pleural membranes and the diaphragm. I am 'lucky' this happened because without the pain from the smaller clot I could have not been diagnosed and ended up with something much more serious.
The pain from this PE was truly dreadful. I cannot remember ever experiencing anything like it. Without oromorph I felt unable to speak, move or even take anything but the shallowest of breaths, I truly felt like I was going to die. I took a huge dose of oromorph at home (I actually didn't care if it killed me I just needed it to stop hurting). It was a real low point for me, I certainly hope that I don't have to experience similar pain during the rest of my 'cancer journey'
I am currently on lots of pain relief - 100mmg fentanyl patches + diclofenac + 60 mg oromorph as often as required - yesterday I had so much morphine I was seeing my cat sitting on the bed. I really love him but it was a worry when he came to visit! Fortunately I have had less morphine today and haven't seen the cat either :-) The doc has also reduced the oxygen flow rate so I might be able to come off it completely tomorrow
What is Coumadin and why is it better? I can't remember the name of the one they are giving me but it is an injection. If I want to go home I have to either learn to do the injection myself or wait for the nurse to come to my house to do it for me0 -
Im just glad you caught this, Miss Tilly.
As I recall from the olden days......
Coumadin is one of the oldest blood thinners, also known as warfarin. It is easier for the patient because it is a pill but i think doctors prefer the shot, Lovenox, because it is more stable and reliable . I went home on 2 daily shots which are very easy to give to yourself. They sting though. I found that the fat in my outer hips had fewer nerves.After 3 months i nagged to go on coumadin and MO relented. But my clot was hand to jugular, not lung, so you may get zippo sympathy.
Anyway, you have to have frequent blood tests to be on coumadin. So you travel to get a blood draw or finger stick every week.......
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