TRIPLE POSITIVE GROUP
Comments
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Tinaguz - welcome! Looks like we have a lot in common, I had the same chemo regime and I was 10 weeks PFC on Feb. 12th. I started my tamoxifen on Jan. 14th and will be receiving Herceptin every three weeks to sometime in September, if all goes well with it. My hair sounds just like yours and I also am trying to be patient. My lower lashes are coming in better than upper but there is hope.
I spent Valentine's day doing various things BC related, my Herceptin infusion was at 4:45. I told my husband that the actual day looked like a write off so 'told' him we would celebrate by going out for supper tonight.
Jennt28 - congratulations on the last Herceptin!0 -
jennt - yay for the last H!
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JennT,
Yah on last herceptin...0 -
My husband and I exchanged cards on Valentine's Day. We went out to a nearby cafe for dinner but not really because it was Valentine's Day. On the way home we stopped at See's Candies (which happened to be open until 9:30 pm) and picked out a small box of chocolates - half with his favorites - half with mine. That was our Valentine's Day.
The oncologist asked me if I wanted to switch my infusion day because of Valentine's Day (last one was 2/13) and I said "no, every day is Valentine's Day with my husband, oh, and besides that, I DON'T WANT TO EVEN GET ONE DAY BEHIND ON CHEMO (lol)."
My ex-husband used to say Valentine's Day was for amateurs but he turned out to be a big amateur so there's that.
powermom, I just don't think guys are wired the same when it comes to things like Valentine's Day - or at least not all guys. If he has been attentive and helpful during this stressful BC time then I might be of the mind to just let it go (if it was me). Or perhaps I would mention it just in passing. I'm not so sure I would mention it to his siblings but then again, I don't have siblings so I don't really understand the entire sibling dynamic. I think that by being there for you throughout all this it shows his heart is in the right place, or that's what I picked up on when I read your post. I do understand why you were disappointed but I bet it was something similar to what Jenn mentioned.
Editing to add: congratulations on the last Herceptin, Jenn!
Also editing to add: Like SpecialK, I'm not big on Hallmark Holidays either. My husband's family is big on cards - my family never was.
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Awww, thanks, Lago! That's exactly what I feel like. Another GD cold!!! I'm sitting here in bed surrounded by kleenex and just so f'ng finished with cancer.
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Tina....I had taxol only. The top of my head was much slower in filling in. It is still thinner, but then it was like that more so before losing my hair. I worry about switching over to an AI.
Gratitude...my only side effect on tamoxifen is hot flashes, so while I hate them with a passion, they are bearable.
Tonlee....Loved your thoughts. About a month before my mastectomy, after my first ONC interview, we met me son at Outback. He asked when my surgery was. I told him the date, which was a Monday. He said, " oh good, I will be back from going to Chicago on Sunday (with the then girlfriend). I totally melted down, started crying and said I couldn't believe he was leaving the weekend before my surgery for cancer. DH looked at him like he was going to throttle him. He freaked saying "don't worry, I won't go, it's ok, I'll stay here." I think it took him two months to recover.
On Valentines.....we exchanged cards, met friends for dinner and surprised our husbands by taking them to the new Die Hard movie. No chick flick. They were all excited. But that was it for us.0 -
Hello Ladies,
Here's an update..... My MRI & PET scans were clear except for some uptake in an axillary lymph node, which we suspected. Staging is complete at 3c, IDC with lobular invasion as well. We are starting chemo first as what I like to call "liquid surgery" in order to shrink the mass and catch any micro-mets. I am going to have my port put in next week then start with weekly Taxol and Herceptin for 12 weeks. Then we will see what things look like and possibly go to surgery from there. I will need more chemo after surgery. I am anxious to get treatment started. I feel like any moment a cell could end up somewhere else. I have opted for a bi-lat Mastectomy in order to decrease the risk of recurrence in my uneffected breast, due to my mom's history. My two girls are really taking this all in stride and are very supportive. They had a very difficult time with my mom's passing because they were so close to her. We joke alot to get through, such as I stated to them, "see, I am just like my mom, like you two are just like me, and as such, just enough rebellious that I got triple positive where she was triple negative." Inside joke I guess, but the laughter beats crying all the time. So I am an emotional wreck. My 16 month old has no idea whats up. My husband is trying to be supportative but I can see he is just as scared and lost. How does everyone cope with your emotions? I feel a need to be strong for everyone around me, but damn, I need to fall down a little too. I'll take whatever advice, suggestions you have. Thanks for listening and allowing me to vent. I actually feel better writing it all down, even if no one wants to read it.
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Mommyof03 - first off, liquid surgery - I like that - very creative!
Regarding emotions - the only advice/suggestion I have is to keep looking at the positives, starting out with that one word - positive. As a triple positive you have more options to throw at this thing. We are so fortunate in that regard. My own oncologist calls Herceptin a miracle drug (another triple positive and I share the same oncologist and he really helps me stay positive as well).
The friend I just mentioned who has been going to the same oncologist for several years had a tumor that was pretty large. She did "liquid surgery" first and it shrunk down to being just scar tissue that had to be removed.
I try to grasp onto any good news that I read or hear. I even take screenshots of posts and file them in a Feel Better folder on my desktop.
I use mantras, positive thinking, prayer - and I even started watching Joel Osteen while my husband goes to mass on Sunday evenings. I never thought I would watch a television evangelist but hey, he is so upbeat and positive that I do what I need to do when I need to do it - and that's become a part of it.
I think the beginning is the worst part of it. Now, that's not to say that chemo is a picnic or walk in the park. It isn't. But at least once you start your liquid surgery you'll be on your way to knocking this thing down. My breast surgeon calls this, this being breast cancer, an inconvenience. Something you need to work through and then move on from. Is that overly optimisitic? Perhaps, but again, I'm just focusing on that glass as being not just half-full but full to the brim. And believe me, this has not really ever been my modus operandi in the years preceding diagnosis.
My thoughts and prayers are with you and your family. Always feel free to vent here or on the chemo threads (or any of the threads at BCO.org). There's no better place to vent than among those who know full well what it's like to walk in these heavy shoes.
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Mommyof03,
Just wanted to say take it one day at a time..it's all so scary at the beginning because you don't know what to expect ..I myself had chemo twice before surgery and after along with herceptin...congrats for clear scans...wish you luck..0 -
Lee...you are so right about it being harder at first. I think it is fear of the unknown. As I mentioned before, I fretted and stressed myself into panic disorder. When I look back, it was all so much more bearable than I expected.
Should I have a recurrence, I suspect I would still stress myself out, but I would have a clearer understanding of what I was facing and how best to face it.0 -
Dear Mommyof03,
As the gals have stated, you are at least now going to get the healing part of this journey under way.
Regarding where you can go to just collapse or release all the stress you keep pent up so that your children and husband, especially, don't have to deal too often (or at all) with your fears/emotions, please ask your MO, surgeon, or volunteers (most of them are cancer survivors, at least at the hospital where I am being treated they are) what support services are provided for you alone and for you and your family. We have so many great support services and groups here in Toronto, Canada, and I imagine it is the same in Michigan. Of course, this thread is such a source of comfort and info., sharing and humour, but if you prefer to be face-to-face with counsellors or spiritual counsellors, dietitians, psychologists, psychiatrists, former patients, etc., that may provide the space you need to release your pent-up emotions, investigate what is available for you. Saying SO MANY PRAYERS for you and for all the gals on this board, tonight, and every night. You have a sense of humour, which is so critical to making it through this challenging time. The scan news was very positive, take one day at a time, and chant the mantra, "And this to shall pass," meaning the trial itself (treatment, side effects, etc) is not infinite in nature. It will end, and you will reclaim your life as you wish to live it. FWIW, I found visualizations of beautiful places I had visited in this world, plus making motivational playlists for my IPOD and listening to them while working out or receiving chemo really enabled me to stay focused and positive. Finally, if you can find one very special friend with whom you can share this experience, that is great too.
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Forever, I think it was I who had the trenchant analysis of your mood. Though Lago has many trenchant analyses, so I don’t mind being mistaken for her. Kind of a compliment, actually.
Mommyof3, we DO want to hear it, actually. That’s a huge relief that it looks like you “only” have a little node involvement. I think Lee and gratitude gave you very good advice on the emotions, though I would add that IMHO it’s perfectly ok to allow yourself to be sad, angry, frightened, whatever. I myself had a total three-year-old tantrum-style meltdown at one point while I was waiting seemingly endlessly for my surgery date. I felt much better afterwards though. My mom, who btw had bc at 42 and is now 83 and it never recurred, said that she would give herself a certain time frame to feel anxious, scared, sad, whatever, if she needed to, but then put a time limit on it. I think that makes a lot of sense – anger, grief, fear, sadness are all PERFECTLY natural emotions with this diagnosis, and you don’t want to not allow yourself to feel those things.
But you don’t want to let yourself wallow either.
Also if you are interested in meditating, youtube has a literally limitless supply of free guided meditations. Studies have shown that it helps with the cancer itself, and it definitely helps with the emotions. And you can meditate – trust me, if I can meditate, anybody can meditate!
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You're right, Cypher! Sorry for the mistake but yes, it was such an accurate analysis!!! Thank you. It made me feel better.
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Glad I could help with my awesome insightfulness.
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Oh I can never keep up with all of u--nor do I understand most of this but I did want to say welcome to the newbies u will find so much comfort and wisdom on this thread, I'm sure u will be back.
And congrats to all who have finished chemo--u did it. nd I truly hope going on meds u will find mild or nothing for SE's.
And if u'r starting good luck and just remember to tell u'r Dr. exactly how u feel all the time--they will help u in any way they can.
And Meditating is wonderful with calming aromas and cleansing u'r mind--it's very refreshing. And if u want to vent come here everyone understands.
And I am sorry for u gals who felt so hurt about Val.D--I'm sure it wasn't meant as a jab to u, cuz it seems like u have DH to help u thru all of this--for some reason sometimes men forget these things---u should have put a note on his car. So he couldn't miss it. LOL
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Mommyof03 this is the worst part. I too felt WTF folks lets get this show on the road. Are we waiting for it to spread. You told me I have a fast growing large tumor… what are we waiting for? Finally 6 weeks post biopsy results I started treatment (surgery). Thing is even with this fast growing stuff it doesn't usually grow as fast as we think. I was told I had my tumor for 4 years. A few weeks wouldn't change things all that much.
As far as Husband, yeah you bet their as freaked out as us. In some ways maybe more. Talk about feeling helpless. Men really do like to protect their women and in this case there isn't much they can do. Just give him a hug and let him know the best thing he can do for you is hug you once in a while. Then tell him you plan on beating this.
So the best way for you two to get through this is laughter and excercise (when you can). I powerwalk to this day and when I don't I just find I'm not as happy. I strength train too but for my head the powerwalks are the best. I'm sure running would be good to but I don't run. I feel there is an age when you decide running is too hard on your body. For me that was about age 10
But powerwalking at 4.6 mph I'm going as fast as some of the joggers out there.0 -
Somebody posted about a Monday night twitter conference they follow. If you are still reading, could you post the info again?
Is anyone familiar with the stand up 2 cancer program? It appears their money goes to research, but I wondered how legit it was. Lots of celebs on board.
Momof3....we have a Pink Ribbon Connection here in Indianapolis. They have resources to everything. I found them easier to get the answers I needed than ACS. If you have one in Michigan, it might have some good resources. My kids were older so I was at home alone during the day. Sometimes, I would just go sit in the lounge chair and meditate under the tree, watching birds, etc. very peaceful and something I rarely ever did.0 -
As far as the ACS they do have a free 800 number (1.800.2345). Every region is different. I find the one in Chicago pretty good. Once you connect see if you can get the number for your regional ACS. You might get a better response.
Livestrong is another good cancer organization (don't hold Lance Armstrong against them) for support.
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Fluffqueen - re: social media/twitter/Monday nights - the hashtag is #BCSM - it's at 6:00 pm Pacific time - I can't remember what time zone Indianapolis follows in the winter but I guess it would be either 8:00 or 9:00 pm your time.
I suggest following @DrAttai
I've met with her in person and she's great. She's also the co-moderator of the #BCSM Monday night chat group. I find it easier to follow Twitter via Tweetdeck because I can set up a column with the hashtag #BCSM.
Here's a tweet that gives a link to one of the transcripts:
RT @jodyms: Still think social media is frivolous? Check out #BCSM transcript - oncologists & suvivors talk abt #SABCS http://t.co/fTx9SzqC
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Re: relaxation -
When my husband was in the cardiac unit during his bout with dermatomyositis in 2007 I played this OM link to try to help him relax. I lost the link but contacted someone online who connected me back to it a few weeks ago (I wanted it on hand in case I needed it post-chemo).
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You're right SpecialK about the music, I just liked her attitude. Got to beat this!!! You guys have been great. As I read the various threads, so many of us were really healthy. This came out of the blue. It makes one wonder. When I said to my dr. I never get sick???Anyway, I think the iron is starting to kick in, not as tired this week. Next week I have an Echo,Colonoscopy & EGD. Hopefully, nothing else shows up. They are still looking for why I'm anemic. Then I'll start the Chemo on Feb 25. I'll have my I pad with music, movies & books and a journal to take notes.
What ever point your at starting, middle or post...Good luck everyone!!!
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lago you made me laugh with your comment about what age running is too hard on your body. I would have given it up much sooner, but had to endure gym class and mandatory sports in high school
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Re V'day. Thanks everybody for your comments and comforting words. I did finally let him know that I was hurt. He asked me if I'd rather him get me a card than do laundry, do errands, go to lunch. I explained that Valentine's Day is extra. Pretty lame in a way, on his part, but I do see now that he was really proud of himself for doing household chores. So weird how differently our minds work. When it boils down to it, I would like to get sentimental, girly things like jewelry, flowers, candy . . And I did everything I could think of to give hints - emailed an idea list for jewelry under $40 from Blue Nile, told him our DD wanted to get me a heart necklace.
Well, enough said on that subject. I don't want you all to see me as a petty complainer! Your comments have helped me see that many couples downplay the holidays, so I don't feel as slighted as I did at first. My DH is always there, albeit low profile, and I am fortunate to have my little family.
Thanks for letting me make a journal entry on here!
Love to every one of you.
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I haven't logged in for a few days & can't catch up -such a busy thread! Sorry to see there are some new members to the thread. I was reading a few pages back where I left off about the comedo necrosis (I think Mommyof3 and Lago mentioned it?). I feel like I never got a very good explanation fo what that meant in the big scheme of things -- what I read on-line was very scary sounding, but my MO downplayed it so much, just like she did with the fact that I had lymphovascular invasion present on the excisional biopsy path as well as on the BMX path. She said comedo necrosis and LVI did not make my prognosis worse. Has anyone been told differently? I realize it's a moot point for me now, as I'm 1 year pfc and also done with Herceptin, but it's one of those things that I still wonder about & keeps me up at night every so often. It was also 8 weeks between my excisional biopsy and dx to the date of my BMX, and chemo didn't start for 4 more weeks after that. So I wonder if the time lapse, together with the comedo necrosis, LVI & Her2+ factors increase risk of recurrence.
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powermom men are just wired differently. My husband always wants me to inspect the bathroom when HE cleans it. (We have 2 bathrooms and no kids so he cleans is own bathroom… then I go over it
). Meanwhile I don't have him inspect your entire condo every week when I clean it. Men don't get hints. You just need to come out and tell them. It would be so much easier if we were married to women. I do get why your upset. He just doesn't understand that getting a card or flowers is him saying "I'm thinking about you" in a very special way other than doing the chores.Shore my understanding regarding LVI is they used to think this was an important indicator but now they feel node status is a more reliable indicator so that's probably why your onc says "don't worry too much about that." I'm sure it's still a factor but doesn't hold as much weight as you think. Also the necrosis thing is not unusual with fast growing tumors like HER2+/triple -/grade 3. It's not a good thing because it means that the cells are growing so fast that there isn't enough blood supply (or something like that) for all the cells to live. Yeah we know being HER2+/Grade 3 that we have a fast growing cancer so what else is new.
But as we know chemo is a killer for those fast growers.0 -
A few weeks ago there was a discussion about sugar/cancer.
I've had this tab open in Google Chrome for a few weeks - it's dated February 1 - and thought it may be of interest.
ScienceDaily:
Excess Sugar Linked to Cancer
http://www.sciencedaily.com/releases/2013/02/130201100149.htm
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Yipes! Help me people, I think I'm going to lose a finger nail....it is so weak down at the bottom (you can actually see where I started chemo in my nail bed).
Any thoughts on how to prevent it? I suspect if it happens it will be painful! Between that and all the blood lost from my hemorhoids, I feel like a total wussie at chemo!
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Pbriain, I'm sorry I don't know what to see since I lost them too. LOL I still have 2 coming off the nail bed and all my toenails grew back facing aideways---People wonder why I don't wear sandals? hahaha
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Lee....that is interesting and thanks for the twitter info. I have no idea what a tweet deck is. I have a theory that all the social medias are making me not social. I don't have time to learn it all. I love it, but it is exhausting.
Also, I take metformin in hopes when phase 3 study results come out it will be effective in helping to reduce recurrence. I do think sugar plays a role, although it is hard not to eat it!
It is interesting that the entire side of my mothers family are diabetic. Grandmother died right before I was born from diabetic complications. My mom, all her sisters, and her brother have it. Some diet or oral controlled, one is on insulin. One had had breast cancer in 1950. Had a radical mastectomy and lived to be 94. The insulin one is 91, and was diagnosed with BC at 86. The women didn't exercise much, and weren't really overweight, one of them was may 25 pounds. They have had lots of other illnesses but very little cancer.0 -
LeeA. Ha! You leave tabs open for weeks, too!
Going back a bit, some of you asked about the curcumin I take: Natural Factors: 'Turmeric Root' Also on bottle says: theracurmin and Curcumin Rich. 300 mg. One a day. Purchased at Nature's Fare (Canada)
I know my integrative health doc looks at all the factors of 'me' before recommending the supplements, so please do your research before rushing off to buy it.
InspireHealth (my integrative team) have very similar recommendations as in Anticancer http://www.anticancerbook.com/... that could help with your research.
I'm currently going a little nutty on tamoxifen. Holy mood disorder! Anyone here want to be yelled at or anything? So unlike me. Wasn't too bad until just recently..now going into third month. Waiting to here what my integrative health doctor might recommend. Any thoughts here on this?
Happy thoughts to all of you. Seriously, I wouldn't send any of you my crankiness. hee hee.
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