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Comments
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Kayb - I'm following your news here. I know you have your MRI? at the end of the month. Please keep us posted. My brother was just dx'd with glaucoma. I need to talk to him more because it was not caught early enough so that he can still night drive (must be both eyes?). Not sure why that is. I feel like my optometrist is more thorough than any ophthalmologist I go to for the medical part of my eye care.
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Daczahow. I Have hesrd many women here who have felt the PET trumps the MRI. I hope you are clear. The waiting is so hard. Keep posting. It will be all cleat for you i hope.
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Here in Ontario you can have problems with your right eye, but not your left eye if you want to keep driving. I've heard this from two people who are losing sight in their right eye. I also have known someone that has a glass eye who's driving for over 40 years that way, so there must be some leeway...
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That sounds like good news for you kayb - about the driving part. My brother can still drive during the day time, so not sure what the vision issue is, other than he does have glaucoma.
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Thank you Astrid I hope the Pet is right !! The waiting sucks!! I will keep you posted ! Bone scan is schedule for Tuesday so hopefully I will know something by late next week
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Quinn, I believe it gives halos over all lights. As there are a lot of lights at night....
I guess I should Google before posting what must be a dumb answer, it's what I believe.
You lose peripheral vision with some eye problems and you have to see the traffic coming at you in the oncoming lane.
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update:saw my breast surgeon this morning. she is referring me back to the oncologist. her reason being that it comes under her jurisdiction as no breast lumps etc, and she doesn't want to order multiple tests when I could possibly get it all checked with a PET scan.
soooo
back to the waiting room for me.
astrid0 -
Astrid sorry you are stuck in the limbo of the waiting room !! We are all here way too often !! Hope they can get you in soon!
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pass the out of date magazine to me Daczahow!
hope you are holding up alright.
astrid0 -
Barbe1958, I just noticed your post on radiation treatment today, otherwise I would have responded earlier. The standard dose is about 50 Grays in 2 Gray fractions delivered to an upper quadrant of the body. You may have had a slightly higher dose but certainly not 9 500 Gray. For comparison, a dose of 2 to 10 Gray over the whole body delivered in a couple of hours is lethal.
For those interested in radiation doses used in breast cancer treatment, here is the link: https://community.breastcancer.org/forum/70/topics/845654?page=1#idx_6
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Hmm mm. Canada here. Do we use different decimal places? If I change to your numbering then I got 950 grays? I know I got over 1 1/2 times the normal dose. The RO warned me I'd be in bad shape and I was. Huge areas of my torso were bleeding and I haven't recovered my energy yet.
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Barbe1958, calculating the given and received dose in radiation physics is very confusing. There are number of units to characterize different aspects of the radiation sources and the beams, but even more confusing is how to determine the absorbed dose. Methods depend on the nature of the particles used for radiation, and the reaction of the tissues to this particular type of radiation. I would love to talk to radiation physicists who develop software for calculation of the received doses for radiation oncologists, but I do not know such people, and for me it would be irresponsible to post more detailed information than I already posted in "my take on rads" thread. I pulled the numbers from some publications, NIST, and Wikipedia to do these crude calculations.
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I didn't study rads at all, just asked the techs as I lay there just how much I was getting. That's when they said at total of 9,500 grays.
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Hi folks, this is a fly by repost re: John Smiths post
A few seconds ago sas-schatzi wrote:
Folks I think John's link should be posted around in the threads you frequent.
1.Reason is most here have sleep problems.
2. It is a naturally occurring in the body
3. we need to use any thing that gives us an edge.
My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.
I keep wondering if there was "something" I was doing that was helping?
Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.
We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.
John reposting on my usual threads. Thanks for all the research you do.
18 hours ago JohnSmith wrote:
New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest
TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells0 -
Really interesting stuff Sas.
Thanks for re-posting and thanks to JohnSmith for his endless researching into the science of therapies and cancer causes.
GP
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so interesting, thanks!
astrid0 -
Bosum, your pain sounds exactly like what I was experiencing earlier this summer. I got a bone scan, but nothing was new. The pain has changed now - of course, so my mind is at ease, but at the time I could only think of bone mets. Having a delayed test won't make any difference to the outcome, so don't be panicked. But ask for a bone scan if nothing else.
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Hi all, I have a question for anyone with brain mets. I diagnosed in 2012 with Stage 1, grade 3, triple positive IDC. I just recently learned I have a 2.5cm solitary brain tumor in the area of my pineal gland, smack dab in the center of my head. Neuro-oncologist is trying to be optimistic that it's a benign pineocytoma, but with my cancer history (BC in 2012 and melanoma in 2000), he stressed that pathology is crucial to know what it is and best course of treatment. And I just learned from him that having been HER2+ puts me at higher risk of brain mets, which I never knew! So apparently pineal region brain tumors are rare to start with, but a mets to that region is also very rare...lung, breast, kidney and melanoma are most common mets to that area though. I won't know if it's mets or not until after surgery. I'm having a craniotomy to remove the tumor on Oct 5. I was curious to ask the brain mets survivors if anyone else had a solitary lesion, particularly in this area? Also, what can I expect for recovery from craniotomy? Neurosurgeon is going through back of my skull at the base, getting to the center of my brain over the cerebellum. Thanks in advance for any advice you may have.
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Hi Steiner18,
I don't have brain mets or HER+ mbc that I know of, so can't answer your questions. But am sending warm healing light for you during this scary time.
I suggest visiting the brain mets sisters topic in this forum to read up.https://community.breastcancer.org/forum/8/topics/...
You might also let them know that you posted your questions here, so somebody comes on over to meet you.
My understanding is that the incidence of brain mets in HER2+ breast cancer has been reduced through the use of Herceptin and other anti-HER2 therapies...but I may be wrong about that. You may want to add that question here too...and then visit the HER2+ topic here. https://community.breastcancer.org/forum/8/topics/...
It's so kind and considerate of you not to post in the wider forum, but it sure sounds like you need answers sooner than later. And that they come from those who've lived through similar experiences.
Sending more light and loving kindness, Stephanie
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I don't think I've read of anyone having a single met of that size. Usually they are scattered smaller ones. Did you get Herceptin? If so, it could be a benign tumour. My DH has 3 benign brain rumours. Had you had a clear CT and this growth is new? Many people find the have these lesions and never knew it. To be able to have it surgically removed is certainly a good thing. My DH'S rumours are too big and they figure he's had them for a long time. Best of luck, sweetie. We are here for you!
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I had coccydynia for 4 years, many scans etc. finally was going to have coccyx removed due to increasing pain but the recent CT scan revealed new lesions... And probable mets... My first mets diagnosis.
I am awaiting the results of my PET Bone scan (which I had Friday and expect results today). I see my mo tomorrow. I had a CT scan done 2 weeks ago which revealed 2 mixed lytic/sclerotic 2cm lesions in sacrum & ileum. But honestly even with normal markers, calcium & alk phos. I am sure it's bone mets due to the severe pain and CT. Believe me I know. They will probably do a biopsy too.
I am on an emotional roller coaster, can't tolerate sitting at all and extremely sad. The pain has me very irritable and I am on Zohydro ( time release hydrocodone), Tramadol and ibuprofen with marginal results.
My husband is retired and very attentive so I am not alone, but I sure feel alone.
Does anyone have suggestions for good pain control ( mine is in sacral area and constant)
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Hi Cat,
For pain control, my best healing allies have been holistic healing approaches, my palliative care team and now my hospice team.
There's a delicate dance in managing pain and managing the effects of treatment.
I appreciate my "cocktails" and my teams' dedication to how I feel!
Each of us is unique and I wonder how much good advice we can give you about your pain control.
Cat, maybe our stories and support will best support you now.
"Sad and alone" (as well as mad and scared) are common responses to huge upheavals like yours. Please be kind to yourself and accept our kindness too.
We've been there and have developed compassion through our own suffering...I hope we can help you feel like you've met understanding and supportive friends here.
sending warmest healing regards, Cat, Stephanie
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Bosum, are you on an aromatase inhibitor? If you are, that's probably the most common cause of pain in the hip joint. X-rays don't always show everything that's going on. Hopefully the ortho doc you're yet to see will order an MRI which will show things like arthritic changes. Could you possibly have a hairline fracture? That could be very hard to see on an x-ray, but would also account for increasing pain, and could have been caused by anything from a sports injury to osteoporosis.
What bone mets feels like can be a very individual thing depending on where it is, the severity, whether it's affecting nerves, etc. For me, it's a burning or aching (more than sharp) pain. When I had a sharp shooting pain in my leg, it turned out to be a fractured femur -- and even then, the pain initially was not where the fracture was.
Worrying about it is the worst and every little twinge adds to the worry. I hope you get swift approval for the bone scan to ease your mind. When is your appt. w/the ortho doc? Are you taking anything for the pain, such as Ibuprofen? Does it help? Deanna
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Dear BosumBlues, hope that your Ortho orders a MRI. I am not a doctor, but honestly that is the only thing that will show if you have spinal cord/disc issues compressing a nerve that is causing the pain and loss of function. I had similar pain and it was a herniated disc at l3 l4 that was pressing on my spinal cord. My leg became so painful, I could not stand on it, walk nor lift it. The spinal cord was decompressed and the pain and los of function immediately returned. Hoping you get to the bottom of this quickly.
Hoping I didn't interfere on a thread meant for stage 4 issues, but when I saw your post and the type of pain you are having I had to share my story . Many non cancer issues can cause the type of pain you describe Hope you are well. Good luck w your visits.
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Bevin how do they decompress the disks as I have bulging disks too. Mine bulge the wrong way (in) so I get relief when I arch my back.
Bosum that should have been your first thought if you have back pain!! I hope that's all it is for you.
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Dear Barbe- I had emergency surgery - by a neurosurgeon which included spinal cord decompression and L3-L4 laminectomy. How they do it I have not idea as I am not a neurosurgeon. Thanfully I was asleep and a wonderful anesthesiologist did his job and the neurosurgeon is Dr. Michael Landi in Buffalo NY - he is amazing. I can say I was in deep trouble, loss full motor control of my leg and my bowel; and post surgery , woke up and was fine with use of my leg again and no pain. Thank god.
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Thanks for the responses! I didn't really expect a cut but cut instruction for the surgery...
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steiner18, I apologize for the late response to your question about solitary brain mets, but I wasn't on the board for a time.
At any rate, I had a solitary brain met removed via craniotomy. It was in my right temporal lobe, though. My met was initially diagnosed as a cavernoma (basically an aneurysm on a vein instead of an artery). My neurosurgeons agreed the best course of treatment for the cavernoma was to watch it and continue monitoring thru scans. After taking tamoxifen for 6 months, the "cavernoma" bled and that caused me to have a seizure. The craniotomy was performed with the intent of removing the cavernoma only to discover it was in fact a BC met. It's pathology was identical to that of my initial tumor, so my doctors believe it had been there from the get-go. A month after my craniotomy I had GammaKnife radiation to the tumor bed. I've had clean brain scans since then - March 2015. My body scans have also been NED. My next brain scan is on Monday...fingers crossed it shows no new buggers.
Best of luck to you! Please feel free to private message me with any additional questions/concerns.
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I received the results of my bone biopsy today. No surprise it is positive for breast cancer mets.( ilium and sacrum.)
I have a week before my oncologist appointment when I will know the treatment plan.
He told me the probable course will be radiation to obliterate the 2 bone lesions and then an AI.
I hope the pain control can be improved because I am taking a lot and it's still pretty bad most of the time.
Wish me luck.
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Cat, I'm so sorry about your dx, but it sounds like your onc has a plan that hopefully will bring you pain relief, as well as stopping the mets, quickly. When you feel like it, come join us on the Bone Mets thread, where you'll find a very supportive group, most of whom have been exactly where you are now.
You may also need a different pain med or meds. Not everything works for everyone. It's a very individual thing. More may not be nearly as effective as just something different, and sometimes a pain or palliative care doc is your best bet for finding something that works better than what you're doing now. Also, as you may know, it's very important to take any pain meds on schedule and not wait until the pain comes back so that you end of chasing it and never getting ahead of it. Just some thoughts that might be helpful... (((Hugs))) Deanna
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