TRIPLE POSITIVE GROUP
Comments
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thank you all. my rashes looks a lot better now. i will be in lake tahoe next week for week (summer vacation). now i am scared to get in the lake or the beach....:( but i dont a choice. i will bring a lot of cortisone cream with me.
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hi all!
Each day since taxol my fatigue has been increasing but thankfully no pain!!! Taste buds are disappearing and I too get hot at night. Ugh!
Since my birthday is Tuesday I treated myself with KFC, fries and smarties. Oh and a caffeine free Pepsi
No junk for another few weeks!!
Had band practice last night it was awesome!!!
Hope that everyone has a great weekend!!
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KFC! omg I hope it wasn't one of those barf bowls.
I haven't had KFC since the mid 80's
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...that is just disgusting looking. i would barf. thanks for the idea, lago, i am gonna go check out health grade now. fun on saturday!
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ugh! No barf bowls!! Lol. Just the standard bucket, fries and salad. You know it really hit the spot. Had some smarties afterwards and that's it. Oh yeh, and a caffeine free Pepsi
Mild aches starting to kick in but I won't take a tylenol until I go to bed.
Hope that I can sleep tonight!!
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Tuesday it will be 4 weeks since my last chemo - my taste buds seem to be normal. I still have stomach distress - indigestion etc. Still extremely tired and muscles still burn and ache with very little exertion. Hair on top of my head still none existent but I think the legs and chin hairs are returning - oh joy. Still have twitches in random places in my body. Mentally I am depressed - worried about work, worried about starting the Ai's - worried about my liver function, worried I didn't do enough chemo, ugh. I cry for no reason - went to see my GP on Friday - he is ordering a battery of blood tests including D and my A1C for my diabetes. Talked to him about how I feel and he said lets get the results of all this and lets see how I can help you through this. It was the first time I saw him since I went to him about the lump in January so we had a lot to talk about. He is really good about suggesting supplements and vits etc to help with things. I can take whatever he suggests to my MO and see what I can do.
Lago - that is really gross!! LOL.
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linda 4 weeks isn't very long. Thin about it. Your chemo cycles were every 3 weeks and with each cycle the SE lasted longer. How did you feel after the last round the day before your last chemo? I didn't even count the first 3 weeks as expecting any change. I think at week 5 I started noticing I wasn't as stiff and I exercised through the first 4 treatments. Look at me. I got the exact same treatment as you but had a much larger tumor. I'll be 4 years NED at the end of August.
I was more scared of AI than I was of chemo. First 2 years my SE were minimal. Now that I switched I'm not having any issues. So don't worry about SE on AI or Tamoxifen. Most of us do just fine and if we have issues we change to a different drug.
You might need to talk to a professional to get through this or some anti-depressant. It's not unusual. But you have a great chance of beating this. Small tumor, no nodes is great. BTW are you really grade1 and HER2+? I've never seen that before.
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thanks Lago - I am going to talk to my GP about the depression and see what he recommends - I really trust him - been seeing him for 27 years!! I am not upset with how I feel PFC really - it is more stress about other things that has got me and things that are out of my control. I am more concerned about not having employment and insurance which is a strong possibility in the near future. My husband does not make enough for us to pay our bills much less buy insurance for me so I just don't know what to do. I can't imagine going out and getting a job in my current condition but it is what I would have to do I guess - all this stuff is very stressful and scary.
Yes - I am considered grade 1 - it was confirmed it again on the pathology from the mastectomy. My Mo also thinks it is odd and so did I - I did talk about it with the MO at Moffit when I got my 2nd opinion and he said that grade is subjective and therefore it could be a grade 2 in a different pathologist's opinion. I had the same pathologist for the biopsy and the mastectomy so I don't put much into it. I would assume that I am really a grade 2 and the score assigned was only one point under grade 2.
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linda I lost my job 5 months before being diagnosed. My husband was already unemployed. This was before Obamacare kicked in as far as insurance for high risk. Cobra ran out… yadda yadda yadda. My husband did find a job while I was being treated. But I still needed to find one. I started with temp jobs. I think my first temp job started a week after my nipple reconstruction!
It's been tough looking but you are looking in a better economy. Not terrific but much better than even last year. I just landed a full-time job (start tomorrow). I started looking about 4.5 months PFC. I think part of the reason I waited is I wanted my exchange surgery to be finished. Right now you still feel like shit. I know I did. That stiffness is hell. I never thought it would go away. Then like I said for me I noticed at week 5 it was getting better.
Give yourself a little time. It really does get better.
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reactivated my membership at my gym today. Felt great to go! Went on the elliptical for 30min and did 3 different weight machines.
My birthday is this tues and Jeff Gordon won Indy today! What a great birthday present!!!! Woo hoo!!!!
:-)
Enjoy your Sunday!!
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This weekend I've felt the best I've felt since chemo began, almost normal. I went to the gym, danced the night away at a wedding and overall had much less fatigue. Trying to figure out why, what's different or what am I doing right. I then realized, Thursday I finally made my decision about mx and recon, something that has really been stressing me out, and suddenly Friday I feel great. I think having made the decision, knowing surgery is scheduled and having a date and a timeline for when this will be over has lifted a great burden. Stress really is a killer!
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debiann. Yes stress is really bad. I'm glad you came to a decision.
FBN so glad this tx is a bit easier for you.
Linda I know what you mean. I'm on disability right now and still need it but feel guilty. Will be on it at least tilY other knee is done. By that time I'll be 60. Oh well. I'll try to find something then. Unless something else goes wrong. LOL
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Happy Monday!
way to go debiann!!
This wed is my 2nd of 6 taxols. The side effects are much milder do far. I hope that it stays this way! While I have mild aches, slightly altered taste buds, on and off fatigue and a bit of tummy trouble, I only have mild aches and have only taken 1 Tylenol 3
As far as my tummy I continue to flirt with constipation but I am going although it is fairly painful as it passes. I have meds that the dr gave me which is a laxative that softens the stool but I only took a teaspoon a day to start rather than 2 x tablespoons a day. I changed that yesterday so hopefully will see some improvement
Now have 3 benefits confirmed:
Fri sept 12 at relay for life. My acdc trib band and classic rock band will perform. We are calling the classic rock band lefty and the goons. Lol
Sat oct 25 - we are organizing this on our own
Fri nov 21 - we are organizing this on our own too
Lots of work ahead as I have to get stuff for silent auctions and smaller things for prizes. Time to start begging!! Lol. We will also be doing 50/50 draws and sell tix for $10 for 4 bands. I also have to order tshirts and pink customized rubber bands
Our benefits will raise funds for the Canadian breast cancer foundation and wellspring. I will also meet with thecredit valley hospital where I am being treated to see if we can raise funds for them as well
A lot to keep me focused and keep my mind off of cancer. This us just what I need. I find it therapeutic for me
Tomorrow is my 51st birthday. Hubby and I will celebrate once chemo us over. Then I'll have a big piece of cake!!
I hope that all are going well! Have a great day!!!!
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?
Question for all - I found an article in the NEJM link provided - one of the questions and answers was as follows
Q: What is the prognosis in HER2-positive metastatic breast cancer?
A: Although an overall response of HER2-positive
metastatic disease to first-line therapy occurs in up to 70% of
patients, complete remissions are seen in only 7 to 8% of patients.
Nonetheless, the remissions can be long-lasting; some patients who
participated in the initial clinical trials with trastuzumab are still
in remission more than 15 years later. Median survival is shorter in
patients who have visceral metastases than in those who have bone-only
metastases. Although the disease may recur in multiple sites,
trastuzumab-treated populations have an especially high risk of central
nervous system metastasis — more than 30% of the patients in some
series. The high rate of metastatic disease to the brain is probably due
to the high invasive and metastatic potential of HER2-positive breast
cancer, together with the limited penetration of trastuzumab across
the blood-brain barrier.Anyone hear anything about the risk of
central
nervous system metastasis?The link for the article is:
http://blogs.nejm.org/now/index.php/her2-positive-breast-cancer/2012/05/25/
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FBN- I have heard this, but when they refer to her2+ disease in research, they are referring to er-/pr-/her2+ in most instances, otherwise they generally refer to it as trip positive.
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FBN, this also only applies to Metastasis BC if I read it right - not early stagers.
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FBN what Moonflwr said. Metastatic disease means the cancer has already invaded other organs like, bones, lungs, liver and/or brain.
BTW I have a friend that was diagnosed with mets from the start. She was diagnosed the same time as me. HER2+/hormone negative. I do believe she is in remission but still gets treated. Yup that's almost 4 years for her and still counting.
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I think that I should stop reading.
:-)
I always seem to go this when I get down
Ugh
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Football you have an "A" in your first name… you got this
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no chemos or drugs really cross the blood brain barrier, from what i have read, but then i think, hmmm: how come when i take a pain pill, my brain gets the message, and i quit hurting so much? and then i remember those commercials with the skillets and eggs, and think thats what they say about your brain on drugs.... and then i think that you and i both have the same thing FBN. our brains are on : too much thinking! too much wondering! too much trying to find things out! sometimes i feel that way, and then i think i am getting pretty close to the point of just not ....looking for trouble
i had read something about that too, but i think i read something about her 2, IF it does metastasize, just has a predilection for the CNS. and i think twinmama is right about - - +. i dont know crap right now i think tho, so im just gonna leave it alone. i could use a huge dose of SusanHG123, right about now....
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Some of the thought behind HER2 metastasizing to the brain is due to Herceptin working so well in the rest of the body. I believe Carboplatin may cross the blood/brain barrier. There are a few that do but not a lot. It's not that drugs to don't cross the bbb it's that very few chemos do.
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Whether drugs cross the blood brain barrier (BBB) has to do with their molecule size - too big and it can't get in - many chemotherapeutic agents and other cancer drugs have large molecules so can't penetrate. This link explains it decently:
http://en.wikipedia.org/wiki/Blood%E2%80%93brain_barrier
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I truly think that it's time for me to stop reading!! While most of my days have been and are positive I still sometimes fall into a far hole which is when I start reading and wondering
Getting my butt back into the gym has helped me to feel somewhat like my old self again as I stopped going shortly before my surgery March 17. When I'm there I feel happy
That's what I should be focusing on all of the time. Living my life. I think that I am getting better at this
To me this sounds stupid but I honestly feel that I will beat this and live a long healthy life as my onc speculates. Then I feel that I m cursing myself by thinking this way. Even though I think it's silly to think that I am cursing myself, I still think that I am
But there's a side of me that's always been foolish like this. Time to say f*ck it and just live
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This website is the only one I read now. The first six weeks after diagnosis was so hard for me. I felt paralyzed with fear that I wouldn't see my kids grow up. I've come to terms with this diagnosis and feel much more at peace with it. I know this could eventually come back but there is a greater chance that it won't! I feel like dwelling on it isn't fair to me, my hubby or kids. I'm wasting precious time instead of enjoying them. I now look at being triple positive as a good thing. That means I have Herceptin AND Tamox/AI to fight this. Don't get me wrong, I still have brief moments of fear. But overall I'm doing much better. There are many things I can do to prevent recurrence. Eat better, exercise, watch my weight and eliminate stress as much as I can. The little things that used to stress me, don't anymore. I'm thankful for the ladies on this thread. The fact that they stick around to help all us newbies is amazing! Many leave after a couple years.
Now...I had my 3rd AC treatment last Tuesday. I still feel horrible! This nasty taste in my mouth won't go away!!!! I have zero energy. I can tell my WBC is low today because I feel a little dizzy/off balance today. I've been trying to eat every couple hours to get rid of this taste and keep my energy up but it's not working. Thankfully my mom took my kids last Wednesday for a week so I can rest. I'm dreading my next treatment on the 12th.
On a good note...I met my new MO last Friday. She is really nice. We discussed treatment and have decided to add Perjeta to my Taxol/Herceptin treatment (as long as ins covers). She's not recommending my ovaries out. She's not sure about O/S plus AI either because of my age. The concern is heart/bone health. At this time, she says there isn't anything that shows there is a benefit to O/S plus Tamox versus just Tamox. That could change later this year so we'll wait and see. Some times I wish I were already post menopausal. It would make this decision so much easier. Do I risk my heart/bones to have a slight advantage against recurrence? Do I take an AI for a couple years when I'm most vulnerable and then switch to Tamox? With Tamox, I'm guaranteed 10 years. With an AI, it could very well just be 5 years because it is stronger than Tamox. Uggg...so much to decide.
I'm glad to see everyone is doing well. Especially FBN..glad Taxol has been so much easier on you!
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mommato you are do right! I really need to move on! Thank you for ur kind words so far this is no comparison for me between taxotere and taxol. What a difference
When I asked my nurse why they start people off with taxotere he explained that if one can tolerate it that means less infusions and ultimately costs although he didn't say that exactly.
I am do thankful that I could be switched. I hope that it stays like this. Other than fatigue the biggest issue do far has been my tummy and keeping moisture in the stool
Started colace last night. Stopped my lactulose because I am going okay. It's just painful. What a crapshoot!!
Lol
More importantly what's happening to my ny Yankees? Argh! Lago no comments please.
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FBN - you need to read the blog I wrote "on a cancer free day" and you will see that you are CERTAINLY not alone in your feelings of "jinxing" yourself! Hugs lady! This shit is hard, but we can do hard things. XO
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Football you're lucky. Been working all day. Do I need to post the shit doesn't happen and the seatbelt lectures again for you? ♥
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I don't know about you FBN, but I have those speeches saved!!
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FBN, don't let cancer win the "enjoy today or worry about tomorrow" game. Worrying only lets it steal more of your life - I refuse to give it that power and remind myself of that any time I start obsessing about recurrence.
Today marks the 3 year anniversary of receiving the call from my surgeon that yes indeed I had cancer. 3 years and counting! Yip yip!
Every day is a win!
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Lago yo have to post them again for all the newbies!
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