TRIPLE POSITIVE GROUP

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  • susanhg123
    susanhg123 Posts: 257

    For Viiolet and others. It is your body. As I told my MO. I am in charge. I need you to write things down and write orders. But, I am in charge of my body and my treatment orders. So for those of you in process-do your research on your diagnosis and options. Ask questions. Seek a second opinion if necessary. But---it is your choice. And, you can change your mind if you wish. Choose not to have RADS now and decide to in a week. Your choice. Your decision. Do not let anyone bully you into a choice you do not want. 

    Now if I could get my MO to let me start Herceptin again. I will have an ECHO every time if he wants. 

    Fireworks still going off over my house. Beautiful. And my slug of a dog asleep under my desk. 100 lbs of snoring mass of black fur. The 14 year old pup I had to put down in the winter would have been crying and drooling and shivering under the covers. 90 lbs of shivering mass of brown fur. Miss him so.

    Much love.

  • moonflwr912
    moonflwr912 Posts: 5,945

    Lago I love those commercials! They really caught my eye!

    Kathec. That's awful! I am glad you are bring a grievance against him  sounds like you really need too. 

    Much love to all. 

  • footballnut
    footballnut Posts: 449

    What an interesting day this Saturday is starting out to be! Let me backtrack to last night when the aches started to kick in. I suspected that if I did experience aches that ithey would target my already weak spots like hips and knees. Whammo!

    So this morning I woke up with similar aches and now the tummy has joined the party! My bathroom and I are becoming aquainted again but this time is the big "c". I feel like it's just stuck there. Can't even stand up!

    I have meds for this but since it just started this morning they will take 1-2 days to kick in. ugh!

    What a terrible feeling! I can deal with the aches but don't want to spend all day in the bathroom just incase something decides to move!

    I hope that once I can start the meds that I don't end up with the big "d" like last time!

    Saw the macys fireworks which was aired last night - beautiful! The US sure knows how to throw a party!

    I hope that ure all enjoying a great weekend!!

  • lago
    lago Posts: 11,653

    The aches sound like maybe the nuelasta? Is this your first? The first is the worst. Are you starting metamucil the night of chemo? If not you really need to try that next time. That's what worked for me so maybe you can avoid the meds. Worth a try now but it can take 24 hours to work. It's also good for the big D too.

    "Does Metamucil cause diarrhea?

    Unlike many other stimulant laxatives, osmotic laxatives, or mineral oil, Metamucil should not cause diarrhea when used as directed. On the contrary, Metamucil can absorb and retain water to make loose stools less watery. Many doctors believe that a bulk fiber can help make bowel movements more formed and less fluid. In at least eight studies done on Metamucil and psyllium (Metamucil's fiber ingredient) psyllium was shown to improve viscosity of loose stools and make stools firmer." linky from their site

  • footballnut
    footballnut Posts: 449

    lago this is actually my 4 th round of neulasta but first of herceptin and taxotere. 

    As far as my tummy it was working fine up to yesterday. Now I feel like stuff is just stuck and I can't get it out. Do of course I can't leave the washroom!!!  I just want to get outta here!!!!

  • lago
    lago Posts: 11,653

    Football that's what happened to me my first TX. Got chemo on Tuesday. By Thursday things stopped moving. Tried everything till I finally did the Metamucil. I was walking like a duck because I kept eating things with fiber (like beans and salad). But some fiber actually makes it harder to go so I got super bloated. Finally the Metamucil worked on Saturday. Ended up with hemorrhoids from that huge shit. After that started the Metamucil Tuesday night and stopped on Saturday when things started to move normally. 

    Ask your MO what you should take for the aches. Some stuff might thin your blood and that might be a problem but don't suffer. I know with Nuelasta I did take Advil with my Onc saying it was OK.

  • Ramey
    Ramey Posts: 11

    Footballnut....I rarely post on here but keep up with everything on here. I too was on Taxotere and still doing herceptin and suffered the big C. I pretty sure it was the steroids the first few days that kept me bound up and in pain so what I did was take 2 senokot S the first 2 nights or until things started moving. My Onc suggested it and it really helped me. It didn't give me diarreah but just made things move easier. I still take 1 at nite on occasion if needed and I'm 8 wks PFC. I'm still suffering a lot of aches and pains but not as bad as when I was on chemo. Just can't wait to get thru all this crap.

    All of you women on here are great! I enjoy reading all your posts and even tho I rarely post You have all helped me tremendously. Reading your posts has truly helped me every step of the way and I am thankful to you all! God bless

  • footballnut
    footballnut Posts: 449

    well I finally escaped the washroom after an hour. My onc gave me lactulose to take twice a day so I took my first dose. Next one tonight. Knowing me it will go right through me and then I'll be back to "d". 

    Lol

    Feeling a bit tired so might just have a nap which is rare for me!

    Thanks for being there for me!!

  • flaviarose
    flaviarose Posts: 249

    milk of magnesia works rather quickly, but it might be smart to start with half a dose, because the results can be explosive.

  • lago
    lago Posts: 11,653

    Flaviarose MOM used to be my go-to but it didn't work for me on Taxotere. 

  • debiann
    debiann Posts: 447

    I'm on TCH, I get the C days 5 & 6, followed by the D on day 7. Amazing how quickly it changes between the two. I've been using senekot for rhe C, immodium for the D.

  • Mommato3
    Mommato3 Posts: 468

    I hope everyone had a great 4th!  My dad and step-mom came from out of state for a few days.  I'll be sad when they leave tomorrow.

    I had my 2nd AC treatment Tues.  I had some problems sleeping this time...waking up at 2:30 and unable to go back sleep.  So far, knock on wood, I don't have the big C.  I had it last time and it wasn't fun!

  • lago
    lago Posts: 11,653

    Mammato as your onc & other doctors if you cant take melatonin. Be sure to check because it does interact with some meds. It aids in sleeping. (If I had known I would still be up at 12am I would have take one earlier myself)

  • ashla
    ashla Posts: 1,566

    hi everyone!

    More good news on Her2 pos research front!

    http://www.healthcanal.com/cancers/breast-cancer/52747-significant-discovery-could-tackle-spread-of-breast-cancer.html

  • violetkali
    violetkali Posts: 96

    Bren 58~ Thank you for sharing your decision with RAD therapy. You are correct, it is about choosing what we can live with. I personally feel that the SE are not worth it to me.

  • footballnut
    footballnut Posts: 449

    ashla the article said that up to 70% of women do not respond to herceptin. I've never heard such a high percentage before. That's not too promising Lthough the rest of the article seems promising

    I've heard so many different things about herceptin. Who knows anymore. All I know is that I'm sitting here in so much pain and aches as a result of last Wednesdays infusion and am so down. I can't believe that this is helping me!!

  • Mommato3
    Mommato3 Posts: 468

    Thanks Lago.  I'll ask my Mo for the next round.  I did sleep better last night.  Not sleeping for two nights made me feel more nauseous during the day.

  • lago
    lago Posts: 11,653

    Football It sounds like this is 70% included metastatic disease because it says "or develops resistance". So if it's "develops resistance" it sounds like it did work initially.

  • footballnut
    footballnut Posts: 449

    lago thank goodness!  After dealing with all this pain and agony I really hope to be around for atleast another 20 or so years with a good quality of life!

    I must admit they these past few days have really beat me up and I can't stop crying. So unlike me!  

  • lago
    lago Posts: 11,653

    Yeah for some reason I broke down on the 4th. You just get to the "I don't want to play anymore" and want to be finished. Surgery was so much easier because you felt better every day. Chemo is such a tease. Up, down, up down until the ups aren't quite completely up and you are just sick of feeling like crap.

    It will get better. It's just a giant time suck!

  • ashla
    ashla Posts: 1,566

    hi footballnut 

    Did not notice that 70 % number. Sounds way, way, way off. Pulled down the post to see if I can ask the source on twitter to clarify not always possible .. Would not be first mistake in the health info articles. 

    Be optimistic ... They have made great strides with Her2 pos breast cancer! Virtually all the progress  has been here.

  • moonflwr912
    moonflwr912 Posts: 5,945

    ashla, that is very interesting. The statistics that caught my eye was the responses in 2 weeks. That means a short time with Herceptin for those of us with heart /Herceptin issues we may actually have a chance to use it again for a short time. 

    Thanks for the info!

  • specialk
    specialk Posts: 9,299

    football - how fast is your Herceptin infusion?  Ask to have it in 90 minutes - it may help with the pain, even though it is permissible to have it infused in as little as 30 minutes.  Taxanes also cause bone/joint pain - I found the most relief with heat.  I took a lot of warm baths and showers.

  • ashla
    ashla Posts: 1,566

    hi ladies ...

    Just want to fill you in on my 6 mo ...33 mo since dx...27 mo post surgery which is when the NED count started .. Check up with my breast surgeon. 

    Last October it was discovered that I had developed 2 small oily cysts along the scar line . Apparently this is not unusual. Had 6 mo mammo and US to monitor it.

    I asked my breast surgeon of I will  need 6  mo mammo & US forever and he said no. Someone here asked me if they do 6 month checkup forever . My md said 5 years.

    Just want you girls who do lumpectomy to know the kind of stuff that you may encounter  down the line.

    Everything was fine btw... mammo/US in April and  clinical last week!

    For you girls in active treatment... hang in there!

  • ashla
    ashla Posts: 1,566

    Wanted to reinforce what Special K said about the time of herceptin infusion. While many of the ladies have had no problems with 1/2 hour infusions, I had trouble when     near the end of treatment a nurse decided  to speed up the infusion. I had no trouble with previous infusions and had gotten gotten through chemo relatively smoothly.

    Big mistake. Don't know how I made it home that day . Knocked me for a loop and took a while to recover. 

     I say... Why rush it? 

  • Christean
    Christean Posts: 84

    Your plastic surgeon would also be a good one to ask about this.:)

  • Christean
    Christean Posts: 84

    Hello old friends.  It has been a long while since I've been on these posts.  I'm 3 years out from my cancer diagnosis...and I really feel great.  It is incredible to say that some days I almost forget I had breast cancer.  My life has continued to move forward.  However, my marriage of 23 years is ending.  Cancer really changes people... And can change marriages.  I am sad and stressed out.   Has anyone out there experienced this?  Divorce after cancer?   I'd love to hear from others who may give me some advice and support.  

  • lago
    lago Posts: 11,653

    Christean congratulations on 3  years NED. Yes I have heard lots of marriages ended during or after BC. Have you done a search. I do believe there is a thread on the subject… It's that common. You got through BC you'll get through this too.

  • specialk
    specialk Posts: 9,299

    christean - good to see you - sorry about your news, that has to be hard.  Here are some links, as you can see you are not alone in this:


    https://community.breastcancer.org/forum/102/topic/818461?page=2#post_4050350

    https://community.breastcancer.org/forum/102/topic/818995?page=1#post_4050432

    https://community.breastcancer.org/forum/102/topic/768356?page=3#post_4050399

    https://community.breastcancer.org/forum/99/topic/768339?page=55#post_4050892

  • Mommato3
    Mommato3 Posts: 468

    I'm so sorry to hear you are going through this.  The idea that my marriage may not survive is very scary.  I see so many women that aren't able to get over their diagnosis so their marriage/relationships suffer.  A friend of mine was diagnosed in 1/2011 with TN BC, and she was so scared of a recurrence that they almost didn't make it.  I truly fear not being able to move past this too.  I know it hasn't been long so I'm trying not to worry too much.

    I found a post about recording your daily exercise.  I've posted a few times.  I was a little intimidated at first because it seemed they were always exercising!  Now I realize that sometimes it's a walk through the neighborhood or pulling weeds. :)  I've seen several posters around that said their MO told them the best thing they can do to help with recurrence is exercise.  It's even more important than diet.  Has anyone here increased their exercise?  What is it about exercise that might help with recurrence?

    Another question some may or may not want to answer. :)  I meant to ask the NP when I was in last week and forgot.  Is it safe to have sex during chemo?  I'm not talking about the week after because I certainly wouldn't feel like it!  Should we use protection because of the chemo or risk of infection?  Sometimes I feel like maybe we should take advantage while we can because once the hormone therapy starts, I'll never feel like it again.  

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