Is there a July 2011 group?

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  • ANA_424
    ANA_424 Member Posts: 109
    edited September 2011

    The interview is great, rabbit!

    ellenquilt - good luck with dinner. I don't know how you do all you do - hope you can get those naps! I also tried taking 3 mg of melatonin and found it did not do much. Made me a little drowsy, but did not keep me from waking up in the middle of the night - which is what I really needed.

    paulamati - hope you are feeling ok!

    ElizabethinPA - thanks for sharing your experience w/Effexor. She actually prescribed it to me for the night sweats, so if it ends up causing them that would be a problem! It does sound like some people have a good experience on it, so I'm going to give it a try. Will do my best to take at the same time every day and am prepared to take my time coming off of it. If it works for me, it seems like it would be worth it.  

    By the way, I've been meaning to mention that folks with kids should see if there is a Gilda's Club in their area that has programs for kids. I do not, but my coworker who had BC a couple of years ago said she took her children and it was really helpful. You don't even have to do it now - she went after she finished treatment. Just a thought.

    Wishing everyone a SE free evening :)

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  • misswim
    misswim Member Posts: 931
    edited September 2011

    Ellenquilt- the 20 mg dose is something I get from my naturopath- her med school best pal is now Naturopath on staff at CTCA in Pittsburgh, so she has e-mailed her constantly about the supplements she will be putting me on after chemo particularly the ones that are being studied to reduce bc recurrence. Melatonin was studied at MSK and you can read about it if you google "melatonin and breast cancer".

    Saw the breast surgeon today and I do feel better. They did through physical exam, ultrasound, and I have, you have got it- MAJOR scar tissue. I had a BMX but my left side was prophy. I have no problems with it. My right side, the "bad" side, as was explained to today, had much more involved surgery. I have mid back pain that comes around from my snb scar to my back, and being right handed and right dominant, it is where all my pain is. My shoulder aches after a day at work and the bs is concerned I am getting frozen shoulder and chostocondritis below my right implant (soreness in the ribs on accasion).  She feels that after a fair amount of PT a revision surgery will be neccessary to help loosen the extreme tightness I feel.

    Did not get to see the research nurse today but have an appt in a few weeks so will report back on the metformin information.

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited September 2011

    Quick update...hi to all...got my bilateral MRI results today and they were fine. HAd my radiation dry run this AM too.....SE free weekend to all.

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited October 2011

    painting - congrats!!!  wonderful news

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  • misswim
    misswim Member Posts: 931
    edited October 2011

    Ladies- if you have netflix, or access to a dvd rental, I just finished watching a documentary called "One a Minute". Fascinating, sobering, but uplifting breast cancer documentary. Totally worth a watch.

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  • khs113
    khs113 Member Posts: 105
    edited October 2011

    Hi Painting That's really great news! Guess we're on the same radiation schedule. Hope to be done by Thanksgiving. Hooray!

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011

    Happy New Year to all my fellow Jews :) a bit late....

    ellenquilt, how did dinner go?

    misswim, I am going to look that one up on netflix today or tomorrow!

    I hope everyone is having a good SE free weekend. Mine are slowly, slowly, getting better :)

    xoxoxoxo to all 

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  • misswim
    misswim Member Posts: 931
    edited October 2011

    Rabbit, it was very good. Overall, had alot of information but had interviews with long term survivors, too (celebs, mind you, but so what) - Olivia Newton John is 17 years out for goodness sake! That made me feel better. It was interspersed with alot of interviews with well renowned oncologists, including Dr. Dennis Slamon, father of herceptin. It was really good.

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011

    My good friend made bc bracelets in my honor for her organization, for all the poker players out there or if you know anyone that plays poker....there is a raffle held where the winner will win a seat into a $1500 satellite for the WSOP 2012, and the rest of the proceeds go to bc research. You can choose your charity when you buy one, they are $10.99 each including delivery. 

    Anyways, thought I would throw it out there, a fun way to donate to bc and cool little gifts :)

    www.thegrinderknot.com

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  • mavinbook
    mavinbook Member Posts: 31
    edited October 2011

    I am so glad it sounds like everyone is doing better if not downright well!  Keep it up, gang.

    Happy weekend!

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  • J-Bug
    J-Bug Member Posts: 626
    edited October 2011

    Busy, busy weekend!! There is a family with a mom and four kids that have been staying in a pop-up camper at the campground that is down the road from my house. The mom was leaving an abusive husband. Two of the kids know my two kids from school. The weather here has been down in the low forties at times and we had some really severe wind storms. Anyway, different combinations of the kids have been coming down to our house to hang out with my kids for the last month or so. The mom is working long hours and is depending on the older ones to watch the younger ones. It is a tough situation, but we are helping them move into an apartment tomorrow and Monday. Tonight we had all the kids. I cleaned out the fridge, did the dishes, made dinner for eight, made caramel corn and now they are all in the living room watching a movie. I had to step away and breath! I just feel for this family going through so much! But, it sounds like the mom has a great head on her shoulders and is finding a way to work through this step by step.

    There is nothing like stories like this to remind you of your own blessings! They actually were all in tents at first, but someone at the campground loaned them the pop-up camper. We have an enclosed trailer to help them with the move, so I thought that would be the best way we could help. That, and just giving the kids a place to play at times. It is such a joy to find a way to help someone in need and has really been great to get my mind off myself! I get so tired of hearing myself whine! : )  

    Rabbit: Very nice article! 

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  • ellenquilt
    ellenquilt Member Posts: 172
    edited October 2011

    Back again, and of course, can't catch up! Sorry if I forget anyone -- chemo brain.

    It does sound as thought everyone here is doing better lately -- I hope that continues. 

    Rabbit, dinner for 14 was a smashing success.  Everyone had a great time, I paced myself so I did some stuff and then napped. It worked out well and everyone pitched in to help so I didn't even have any real cleaning up to do afterward. Considering we were crammed together since the downstairs (street level) floor was off limits, we did pretty well.  Even the 14 month old managed to find space to run around and be cute.  Hope everyone else who celebrated had a great Rosh Hashanah.

    Misswim: I will be checking that movie out on Netflix later today and adding to my queue.  I know a lot of women (too many) who are long term survivors, so I'm constantly inspired by them.  My mom is now just about 12 years out and doing just fine, and one of my friends is over 20 years out and fine.  I'm an optimist by nature, so I'm applying that to my bc diagnosis.  A bump in the road. A big, annoying, SE bump, but still a bump to get over and get past.  

    J Bug: I'm sure you and your family are a real blessing to that mom and her kids. And it is always good when we  can focus on doing something good that gets our minds off our problems for a bit.

    I had the first really good night's sleep I've had in months last night.  I've increased my Melatonin dosage and it seems to have made a difference.  I'll know it that's the ticket if I get another good night tonight.  I've been commissioned by a friend to make a hat for her daughter and my younger son had me buy silk yarn no less, to make a hooded scarf for his girlfriend (who I've yet to meet, but who I like already), so I've been a knitting and crocheting fool all weekend.  Very relaxing.  I expect to get some good pictures up on my blog when they get their finished products.  

    Still no progress on house repair, but I'm getting used to having the kids sleeping on the sofabed in the living room.  I just work around them if they're not awake when I get up. Noise doesn't seem to have any effect.   I think it would take an atomic blast to wake them up before they are ready to wake up.  

    It looks like a beautiful day outside today, so I'm going to try and enjoy it and I hope the rest of you have a wonderful day without SEs. 

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  • Allenan
    Allenan Member Posts: 111
    edited October 2011

    Hi My Fellow Warriors: 

     I know this is breast cancer awareness month and before my own BC I use to do the BC walk. I plan to do it again this year if I am up to it.    However, lately it just seems as if everywhere I turn I am hearing stories about Br, Cancer, (mostly tragic) and it finally got to me I guess.   I fell into ta  depressed, crying state.  I must have cried off and on for almost the last 2  days.  I wonder if its hormonal because I was feeling on top of the world just two days prior to this nose dive.    I am getting serious night sweats/hot flashes also.  The GI problem and night sweats seem to have gotten worse since finishing chemo.  Anyone else experiencing these SEs.?

     FIGHT4FAM:   You  are not alone.  Your  SE experience and feelings about the scar tissue over the original lump mirrors my own.  I find myself getting up 2-3 times nightly.   Do you have any arm pain?  I do not know if I slept badly but I have pain on the arm of the surgery site. 

    RABBIT:  I hope the mouth sores are getting better.  I was trying to find a post from you to see if they were getting better.  You are in my thoughts constantly.

    ANA: Love your cruise story.  I am thinking of taking a Spirt Cruise for my birthday this weekend.  Don't know yet.  My hubby is working and I would have to take my kids with me.  I do want to do something to celebrate though.

    EllenquiuiltL:  Thanks for letting me know that I am not alone with the gas.

    Frances:  I had no node involvement but when I had asked about an MX, my BS reassured me with the same words.  Said chemo, rads and tamoxifen should wipe out any residual cells.

    KK11: You hang on to your dream -- even if its going to be delayed 2.5 years.  I know the years will go by quickly and before you know it the time is here.  Look, I cannot believe its already 6.5 months since  I found the lump and started my BC journey.  Be encouraged.

    Dexxy:  Wish I was going on a trip too.  Enjoy it to the fullest.

    I have not finished reading all the post so please forgive me if I did not get to respond.  I do try to catch up but its hard to do.  For now, God Bless you all. 

    HUGS,

    Ann

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  • J-Bug
    J-Bug Member Posts: 626
    edited October 2011

    Allenan: Are you just a few days post treatment or were you just taking steroids. That seems to cause a pretty big crash and burn like that. I used to find (before breast cancer) that if I took something to help me sleep like Tylenol PM that it would make me feel very depressed if I took it a couple of nights in a row. Maybe something along these lines contributed. You certainly have every right to grieve, but it does sound like it is not your day to day normal. I hope you can find something to bring the joy back.

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011

    hi Allenan, the mouth sores are much better, thanks. Now I have to deal with the tooth that was beneath the crown that was taken off a month or so ago. That tooth had a root canal so it's dead, but it's loose now! I mean, I can wiggle it with my finger, and it's sore around it....I'm guessing it needs to be pulled and being on blood thinners I doubt that's going to happen anytime soon! I am a mess :(

    I made a list of all the SEs I've had with this nasty docetaxel....12 of them, count 'em 12! I decided to make an appointment with my onco on Wed.  to talk to him about these SEs.  I seriously do not think I can get infused in 9 days with an open mind, I know what the first round did to me and I don't think I can go through that 3 more times! I am praying he will reduce it by 20% or something, I seriously think that docetaxel is way too toxic for my system. Before my dx, I was exercising regularly, eating pretty darn healthfully, and now I am getting almost no exercise and at times eating garbage because that's all that I can stomach (frappes, milkshakes) with the mouth sores and all. I think my body has freaked out and if I get another dose of that docetaxel at that strength anyways, it will literally kill me. Anyone else go through this thought process??

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  • Snoopy73
    Snoopy73 Member Posts: 287
    edited October 2011

    Rabbit - Thanks for sahring your interview... very Good!!

    Hi all, I am sorry been MIA, just bsy with work, kids, Rads schedule, and doc appts. Had my port removed last week on thursday, had my "simulation/dry run" session for Rads on friday, starting my radiation today... very anxious, but also cant wait to get this part of my treatment over and done with. 

    Paintingthru - are you having your Rads at MGH in Danvers? who's you RO? Hope all goes well wiht you.

    Sending you all positive vibes and wishing you a blessed week.

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  • Allenan
    Allenan Member Posts: 111
    edited October 2011

    Hi All,

    I called out from work today as I still do not feel myself. 

    J-Bug:  My last treatment was Sept 21 and last steriods was Sept 22.  The gas has subsided a bit, but the minute I eat something, its back.  I guess I start my mind racing about the "what ifs"  I wish that right after radiation they could just check again and make sure nothing is there.  My mammo appt with the BS is not until January.  Since I will be finished with radiation the end of Nov, I just think 2 months is a long time to wait.  Anyone else have this experience. 

    Rabbit:  I felt I was not eating properly for a while too. I was on a milkshake binge for about 2 weeks because that is what my body could handle.  My only consolation -- and something I do believe strongly -- is that your body will dictate what it is you need to have and it will do the best work when it gets that very thing.  Right now, yours is milkshake.  .  Its better than not having anything at all.  Do you buy the shakes or make it or have it made.  Making or having them made with rice or almond milk may be a way to get even more from it.   I cannot wait to find out what your onco says on Wednesday.  Hang in there and be encouraged.  After this, you will not want any more milkshakes and you will go back to your healthy lifestyle.    Lots of Hugs!!!  I too need to get into exercising again.  Going for a walk right now.

    Have a good day everyone!!

    PS:  Have this sometimes sticking, stabbing pain in my other breast -- it just started yesterday.  Its making me scared.  I am thinking of calling my oncologist about it if it gets any worse.

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011

    thanks Snoopy, when I did that interview, I was feeling pretty good, it was around my last FEC, this docetaxel crap is for the birds! LOL I feel like a hypocrite, I have not walked in 10 days, I couldn't walk since day 3-4 until a few days ago or so, well, without a major limp.

    Allenan, the shakes or frappes are from Starbucks or McDonalds (I think I have eaten here 3x in 8 years until chemo LOL)  The first few tx of FEC I was doing my own juices, I got sick of that and the taste isn't appealing to me anymore. I do buy some organic juices that are already made and drink them once in a while. I am eating okay the last few days, craved Thai yesterday and had some coconut milk soup, yum, that tasted awesome! It's funny how the taste buds changed so much with each tx. I'm not craving the eggs like I was on FEC. I have tried almond and rice milk and not crazy about either, used to do soy milk but of course with ER+ I had to stop that. 

    Hope everyone is feeling good today!!!  

    xoxoxo to all 

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  • sandy115
    sandy115 Member Posts: 172
    edited October 2011

    Hi everyone just checking in J bug what a great story helping that family especially since you are going through  some pretty tough stuff yourself do you live in a small community? Rabbit I hear you about the Taxatore Day 7 and still feeling lousey treatment # 4 worse one yet severe bone pain bladder pain, headaches,metal mouth taste, Fungal infections in 3 diff places, and feeling week all over have.nt been out of bed in 6 days I dont know if I can handle 2 more of taxatore either.Let me know what the oncol says about reducing dosage.Ellenquilt Glad things are coming around regarding your home and had a success dinner.Missswim I am on metforimn for diabetas I heard there was a clinical study B/C and metformin let me know what you find out.Hope everyone a S/E free day tommorow.Hugs.

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  • misswim
    misswim Member Posts: 931
    edited October 2011

    Hi all- so I got a call from the research nurse at my cancer center re the metformin study. It is a Phase III trial, which to me is encouraging. Good news is, I qualify. Even better news, I guess, if you look at this way is that it is not a double blind study, and my age (37) grade 3 and my high intermediate oncotype pretty well guarantee I am going to get the real thing, not placebo. So I guess there are some positives to the things I find crappy about my cancer. My oncologist is all for it, and as I see a local onc and the onc running the study at my cancer center, I am excited that they both think it is a good idea. The idea is that it reduces insulin levels, which, in the case of certain cancers, especially hormone positive breast cancers, it causes the slowing of growth of cancer cells because it starves them of insulin. The nurse said that of course they do not promise anything but she did say the studies thus far are VERY encouraging. I have an appt. a week after my last chemo, and I am very, very excited to hear more!

    Starting PT tomorrow for the issues I am having with my back/shoulder since my BMX. They have been totally exacerbated by chemo, and the surgeon said PT is imperative. As I have had bone scan/mri we know it isn't anything else, thank god. It's painful! Has anyone else with a BMX had muscle pain in the shoulders/back? Taxol does not help. However, it is a walk in the park pain wise in comparison to the Nuelasta hell I was in!

    In the chair for taxol #3 on Weds. Can't believe it is almost over. See the onc and we are going to discuss the route after chemo- tamox and lupron for a few years and then an ooph, or an ooph right away. I am hoping for the first choice.

    Rabbit- you poor thing! I hope it gets better for you. I envy those of you who have excercised- it just has not happened for me! Between working, dealing with treatment, and my family....... it has just been tough. Hope to get back at it soon.

    Ellenquilt- glad the Melatonin dose change helped. Did you get to check out the documentary I mentioned?

    Love to all xoxo

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  • paulamati
    paulamati Member Posts: 43
    edited October 2011

    Day 6 after 5 chemo ..still tired, trying to eat what i can.

    Rabbit...I do have almost the same SEs , I can barely walk, my legs are killing me and food puaj!! the first week is the worst ever, but Im in my 5th dosis and i survived to this crap so you can do it :)  Hope we feel better very soon.

    Allenan im having the same pain in my other breast, my onc said if is sharp and go fast i dont have to worry about it..tell me what yours said.

    J-Bug what you did with that family is amazing..good bless you

    tomorrow my mom leaves to Chile, she was with me since my first chemo..its going to be difficult now without her, going to miss her food, help and company...i just dont know when im going to see her again :(

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  • luvmy2kids
    luvmy2kids Member Posts: 65
    edited October 2011

    Hello Ladies,

    I am due for Taxol number 5 tomorrow... I am noticing a VERY salty taste. This has been going on since my last infusion.. Has anyone else had this occur? Thanks!

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  • J-Bug
    J-Bug Member Posts: 626
    edited October 2011

    luvmy2kids: I am doing Taxol number 4 on Friday. Mine are every two weeks, dose dense. I have never noticed the salty taste. However, I have had all of the other things that people mention; extreme bone pain to the point that I can barely hobble around with a cane for a few days after, numb fingertips and toes, peeling skin on my feet, fingernails and toenails darkening just a little, etc.

    To all who commented on the moving of the family: I mention it because it made me feel so much better to not think about myself and all the SE's. My husband was raised in foster care and orphanages and was homeless for a short bit. He had gotten himself emancipated from the system at 16 so he could get away from the abusive households he kept getting put into and the apartment he thought he had fell through.

    Then, I also can relate to difficult moves because when we moved from MI to WI, we went through a difficult time trying to drive back and forth with a bunch of trailer loads with a 6 x 9 enclosed trailer through Chicago every time. It was very stressful with our son's medications for an unspecified mood disorder needing to be adjusted. Then as we were finishing and showing the house to a realtor, there was a fire. Long story! But, let me just say, I have moved many times - but that was by far the most difficult! I wish we had had a better support system through that. So, it certainly felt good to do that for someone else and to get my head out of my a$$ with all this focus on cancer!! : )

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  • dexxy
    dexxy Member Posts: 229
    edited October 2011

    Hello everyone - I've been trying to catch up and see how you are all doing.  Thinking positive thoughts and hoping you are all nearing the end for the most part.  Had my first radiation treatment today.  looking for th elight at the end of the tunnel.  hugs to all

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  • luvmy2kids
    luvmy2kids Member Posts: 65
    edited October 2011

    Thanks J-Bug....My chemo nurse said chemo is cumlative and this just may be one of my SE.... So far no nail issues and little bone issues. I am not having Dose Dense though...  I may experience those things later in my sessions? I just want this to be over.... I am getting tired of going to chemo every week.  I know stop sulking;-)  Take Care!!!!

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011
    sandy115, I can't believe my onco said "you'll breeze through the docetaxel" That's a load of cr@p!

    I'll let everyone know what the onco says tomorrow....

    misswim, that's exciting and awesome news about the clinical trial, best of luck with that, I will pray for you that it does the job!

    I finally got a walk in, about 20 minutes last night...felt GREAT.

    paulamati, I am so sorry you have to face your mother leaving indefinitely, that's sad and I hope you have the strength to continue your fight and get through it all. Stay around positive people and talk to her as often as you can on the phone.

    dexxy, how many rads are you in for? Good luck with it :)

    Hope everyone is feeling well these days, I am just starting to feel ok and going to enjoy my last week before my 2nd dose of toxic docetaxel next Wed!  

    xoxoxoxo 

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  • J-Bug
    J-Bug Member Posts: 626
    edited October 2011

    luvmy2kids: My onco. offered me the option of doing chemo every week when I first started Taxol and found that it caused so much pain. No way! When I weighed three more treatments over eight and EVERY week - I just couldn't do it. I feel for you! l hate the pain, but I am glad to not be there every week. This too shall pass. Do you have three to go? Hope you are doing well from today's treatment.

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  • luvmy2kids
    luvmy2kids Member Posts: 65
    edited October 2011

    j-bug----ugggh I have 7 more;-(  I had to do 12 weeks of Taxol---I guess I am glad to be done with the AC though.  I should be done November 22nd but who is counting;-)  My SE from today--well I slept through much of the infusion today and right now my head is wet..... really weird  my head/scalp tends to sweat??? Maybe hot flashes?? 

    I see you will be doing a bilateral mastectomy... I am contemplating that--I have an option of doing radiation or mastectomy....  VERY HARD DECISION I might add!   

    BTW I am 40 as well.  I never thought turning 40 would be so terrible... 

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  • J-Bug
    J-Bug Member Posts: 626
    edited October 2011

    luvmy2kids: So sorry on how many you have left! But you are definitely getting there! It sounds like it may be hot flashes. I thought when I was first getting them that I had a fever because I would feel so hot at first, and then just totally sweaty. I kept thinking, my fever can't be breaking THAT often! Then it dawned on me that it was hot flashes. I wake up in the night with my pillow all wet from sweating too. It seems to be worse right after treatment or spicy foods. 

    You can do radiation OR mastectomy? That sounds strange to me. How large was your tumor at the beginning? Mine was over 8 cm, so I will have to do both. My decision will be in double or single mastectomy, but I think I am going for double, and then which method of reconstruction. I am starting to research the different methods now because surgery will be in November.

    I turned 40 in April, had a perfect yearly exam, then found the lump in May. Yeah, I didn't think 40 would be such a shift in life either, but in some ways I feel better than I did before diagnosis. You have to find things that bring you joy. I bought The Muppet Show, Seasons 1-3. I was a huge fan!I have been enjoying sharing them with my kids. I am determined to find some fun in 40!

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  • rabbit
    rabbit Member Posts: 613
    edited October 2011

    I am doing the Susan G Komen walk on Saturday, Oct 8th and am putting everyone's name from our July group, on my back, I am walking for all of us!!! 

    I will get a picture and post it after....

    hugs to all 

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