Calling all TNs
Comments
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BTW, that picture is not a chain letter - the comment about sending it on was part of the picture itself. But I did think the t-shirt was meaningful and who could resist that face!
Doreen
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Navymom and Sugar-Thank you so much for welcoming to this thread. I sure wish none of us had to be here, but I'm grateful for your support.
Cocker Spaniel-Loved the oceanview!
Inmate-Wow, words cannot convey how much I appreciate you spending the time to write to me. I have been following this thread for a bit, and I know you have been having a tough time lately, so THANK YOU from the bottom of my heart for reaching out to me. I live in California; yes, medical marijuana is legal here. I have printed out the studies regarding the benefits of CBD compound in pot to present to my oncologist. She's pretty conservative, so I'm not sure what her reaction will be...but the worst she can say is no, right? Then I may go the route of the alternative practitioners to get a prescription. Good to know the edible stuff works for you. That's probably what I would go for, but definitely looking for low THC. Don't want to be getting high in front of my teenagers! I'll take a look at stickyguide.com. This is a whole new world for me!
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TLYM: Welcome to this great thread... I'm sure you'll find lots of helpful advice, inspiration, hopeful thoughts and... humour. (Bernie: love the cat/dog thing... and Titan, I agree, where's that "rotate view 180 degrees" view button on my computer?)
Re surgery options, all the research I've done suggests that there is nothing about TN itself that warrants a BMx, though there may be other considerations that do. Being BRCA-positive, for instance, is a deciding factor for some women... although others may choose heightened vigilence/follow-up monitoring. Have a really good sit-down talk with your MO to determine your risks and what, if any, further surgical option would reduce those risks and by how much.
As for the marijuana research, very interesting article - and thanks for posting. For those who may not have read through it, the focus is not on smoking marijuana for relief of pain or stress, nausea etc... It is about an active ingredient in cannbis that may stop the spread of TN metastatic cancer (not early stage)... and which is not obtained by smoking your garden-variety street MJ. Definitely an interesting avenue for more research.
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I've heard that chemo can change your vision...I sure as heck can't see the ocean!
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Ocean?
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Luah-Thanks for the welcome and for reading the article about medical marijuana.
Quote from it: A growing body of early research shows a compound found in marijuana - one that does not produce the plant's psychotropic high - seems to have the ability to "turn off" the activity of a gene responsible for metastasis in breast and other types of cancers...deciding to concentrate their research on metastatic cells of a particularly aggressive form of breast cancer called "triple negative."
Since I will be receiving adjuvant chemotherapy, with the assumption that micrometasteses could have entered the bloodstream, I don't see what the harm would be in trying the medical marijuana as an additional therapy. Some dispensaries here are claiming to have edible products that contain only CBD, the compound touted in this study as being beneficial.0 -
Hello English Rose,
I just wanted to say that I was diagnosed with triple negative in 2005 and that my consultant told me that I was oestrogen negative and only 5% progesterone which was counted as negligible and thus negative, and that I was Her2 negative. My understanding is that oestrogen is the bad guy and that progesterone is a protector.
Whatever the receptor status, the treatment is much the same as regards surgery, chemotherapy and radiotherapy. After that for the hormonals there is of course Tamoxifen or Arimidex. They are no picnic and I am glad I am not taking them'
Best wishes
Sylvia
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Inmate- send me some brownies
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TLYM.......You are in California, lucky you. There is a place you should check out. Harborside. Very progressive in their research and strains speifically for cancer and other illnesses. Please google them. I met the owner at Hempfest a month or so back. Very compassionate advocate for medical use.
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CS...what ocean???? LOL.
TLYM....Go for it! Lots of women on BCO believe heavily in the advantages of adding supplements to their current treatment regimen. Vitamins and Herbals and the like. IMO if doing something, taking something or whatever it is, makes you feel like you are actively trying kill the beast or keep it away, then it can be a good thing. especially if it helps you feel better. Problem is, it takes such a long time for research to be completed and for results to be published.....
And while on the topic of research.....Just want say thank you to all those who are participating in current trials. Without people like you, the rest of us and those before us would not be where we are today.
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OBXX.......I would love to. Let me see if I can figure that one out. How are you doing today my dear?
Lot of love to you!
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(((OBXK)))- I hate this disease.. I agree with all we need a circle hug..
I had my first mammo since completing treatment on my birthday, day before yesterday- I go the all clear.
Inmate- Good info and glad to see you checking in. My State does not have medical marijuana, but the state next to us does. There was a huge article in the paper regarding this and those of us Idaho'ns traveling across state lines to get meds. I have read and re-read the articles regarding the oil, and what it can do. I just wish every state had the same rules.
Spica- thank you for that down to earth explanation, and I agree with others, wow what a interesting and great job you have.
Cocker- I do not see any ocean, nor do I see a head on that ass.. yowzers
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I see no sea
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Cocker--full on belly laugh! Yes, rotate 180 degrees please...
Thanks Christina, Lovelyface and Sylvia for the information. I love this group. You're amazing.
So, had my meeting with the oncologist yesterday and went in with reams of paper, sections underlined, notes in the margin, list of questions at hand. I'm sure I saw him let out a discrete sigh as I pulled all my research out of my bag! We went through the pathology report in detail and I think I understand as much of the content as I ever will. We talked alot about the PR status. This information came in a separate test afterwards and was listed as "3/4". Even my oncologist didn't know exactly what this meant since here they score ER/PR status out of 8 (my ER status was 0/8). So, does this mean 3.5/8, or 6/8? He is confirming this with the Pathology Dept.
In any case, his view was that whatever it is "there's definitely something there" and this warrants a discussion about hormonal treatment. Since many strongly ER+ people who take this don't benefit, the chances that I will would be even less, but we agreed that anything's worth a shot. If the side effects are particularly bad, he said he'd be more inclined to take me off it, weighing risks and potential benefits. He said that it is unusual to be ER-/PR+ and confirmed that it's only about 3% of all BCs. Lucky me! I asked him about re-testing and he was adamant that the guidelines over here were such that a false result would be highly unlikely. I may have to just trust him on that.
I was also wondering if anyone here knows anything about aspirin as helpful in preventing recurrence. I've seen a few studies that imply that it helps. Grasping at straws, I know...
Starting the Taxotere portion of my chemo next week. Not looking forward to it. The steroids that I've had for the first three have made me a crazy woman--apparently they double the dosage for the Taxotere. I've told my husband to buy some kevlar...it's going to be ugly!
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Alrighgt ladies, I'm going to he beach with my sister and her best friend this weekend so I will report back as to the view fronm the rocky shores of the San Juans. I just hope it is a similar view. Should make those shots of tequila go down a little smoother.........hehhehehe
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Inmate - Have a great time and enjoy the company.
EnglishRose - Good luck with the Taxotere. If you haven't checked them out, there are threads on Taxotere (Taxotere Toolkit is particuarly helpful). I iced my hands and feet and fortunately only had passing bouts of neuropathy. Also, throughout all my chemo (TACx6) I swished and swallowed olive oil twice a day. Took a while getting used to, but it really saved my taste buds. I only lost my taste a day or two each round, and even after the last round, my taste was back to normal within a week or two. Wishing you all the best.
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Dear God: Let me give you a list of just some of the things I must remember to be a good dog.
1. I will not eat the cats' food before they eat it or after they throw it up.
2. I will not roll on dead seagulls, fish, crabs, etc. just because I like the way they smell.
3. The litter box is not a cookie jar.
4. The sofa is not a "face towel."
5. The garbage collector is not stealing our stuff.
6. I will not play tug-of-war with Dad's underwear when he's on the toilet.
7. Sticking my nose into someone's crotch is an unacceptable way of saying "hello."
8. I don't need to suddenly stand straight up when I'm under the coffee table.
9. I must shake the rainwater out of my fur before entering the house-not after.
10. I will not come in from outside and immediately drag my butt.
11. I will not sit in the middle of the living room and lick my crotch.
12. The cat is not a squeaky toy so when I play with him and he makes that noise, it's usually not a good thing.
P.S. Dear God: When I get to Heaven may I have my testicles back?0 -
Inmate - I've hiked those rocky shores. The "view" better wear sandals!!!
Have fun! ~ Shar
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EnglishRose....saw this and thought of you
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Imagine the "oceanfront" ...
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Inmate - relax and enjoy yourself! "Jose Cuervo, you are a friend of mine...lalala"
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Lory - what great b'day news. Enjoy it !!!
Inmate - LOL as I think of our bald mug shots, on Nancy Grace!
I'm still wonderfully numb - when does it wear off?0 -
Hi Inmate! Good to see you posting! My MO is retiring in June and moving to the San Juan Islands- He will be there in a couple weeks looking for a home. Small world!
Wow Annie! My husband doesn't look like that either- who do I have to talk to to get my husband an ass like that!!
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Yes Babs imaging the "Ocean Front". Boy is my imagination working. Really pepped up my day.
Titan - down girl lol.
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hey..cocker...a girl has to dream doesn't she...?
Inmate and all...my hubby and I are heading to the beaches of South Carolina on Monday...I'll be on the lookout for the "ocean" ha ha...
My friend just finished chemo today! I hung out with her and we skipped out..she was so happy! She took off her wig and I saw some peach fuzz there...so all is well..now time to heal...she has rads coming up and she is red head (or she was)...I told her that she may experience a little burning but hopefully not too bad...I was lucky that I have a more olive type complexion...and didn't experience any burning at all
The weather in SC is supposed to be in the high 70's and no rain..I'm not using anything higher than an 8 lotion..for the first day...after that...burn baby burn
Inmate..let's plan on that shot of Tequila...when and where? pm me your cell and we will enjoy one together...seriously!
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Titan wait for me. I want to see the "Ocean". I too am a red head or was, now I'm coming through gray-ish or something like that. . But I never burnt with rads and only got slightly red which faded about a week after I got home and no blisters at all. When I sit in the sun I always burn first and then go a deep brown. I thought I might dye my hair silver when its grown a bit more. Anyone got any suggestions on what color it might turn out.
Karen - hope you are having a good day. What a stupid thing to say! but I do hope you are coping ok and not getting too stressed out with your doc's visit next week.
By the way ladies I asked that chap to do a 180 d and I was very dissapointed!! You just can't tell nowadays can you. So its back to me old fellars arse, at least his is not air brushed. Annie
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Titan - I too am a (former) red head (well, still am with some help!) and hardly "burned" at all with rads. My skin held up really well. I did ask, and apparently there is no correlation between burning from the sun and how your skin will react to rads.
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English: I take a baby aspirin daily (when I remember - lol). I figure it can't hurt.
Unbelievably, I forgot I had a follow-up mammo scheduled for today until I got the reminder ping on my outlook calendar 5 minutes before! Is this chemo brain or life moving on? I whipped over to the center to get squished by the waffle maker. Ooo-Ouch! Fingers crossed all is okay - will hear in a few days if not.
You ladies enjoy your beach time. We have a long weekend coming up in Canada (Thanksgiving)... heading up north for a family gathering, turkey the whole bit. Ds, 20, is flying in from out west.... can't wait to see him... We're going to cycle and hike the "mountain" - and enjoy all the fall colours which are absolutely stunning this year. These moments are so extra-special to me now.
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Wow, I am reading this so much; most of you ladies have to wait days for your mamo results? I am blessed our center give us results while we wait! Even my MRI results, my radiologist calls me within 2 hrs
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Annie - life goes on, with two boys in the house. I meet the Danish exchange student on Sunday. Loved the beach shot! My husband has a great bum
Luah - your holiday plans sound wonderful. I hope you mammo is unremarkable!
My dryer died and I have to wait on another part. I hope it stops raining here soon, I hate the laundromat!
Here's the bed I want...
http://item.mobileweb.ebay.com/viewitem?itemId=170814815109&cmd=VIDESC0
