Has anyone started a Dec 2011 group?

rachelvk

Okay, that's sort of what I was thinking. I certainly have worn the heck out of my cardigans the past few months. I've managed to move back into pullover sweaters, but a few times I've needed help getting out...

Mardibra

Thank God open front sweaters are in this year....they are my "chemo" friendly attire.

markat

Rachel I wore a sweat suit with a tank top.



So many people have given me sweat suits that I feel like a mixture of Sue Sylvester and Betty White.



Is anyone having bad headaches? My head feels like its going to explode. I'm starting to worry that its blood pressure.

Mardibra

Had a mad headache yesterday.  Also some nausea.  I just feel like crap!

Whatashocker3

Ok so this is where I am at emotionally. It is Christmas time and I have 2 wonderful boys and a wonderful husband. I finished my first treatment last Tues and was fortunate enough not to experience very many side effects. At this point I am waiting, waiting for me hair to fall out (plan to shave it next sat) and wait for my next treatment. I don't want to be a downer for my family. I am a little angry,depressed etc. I do think alot of it has to do with how on earth there has been so many 40ish year olds diagnosed with this disease when the percentage is supposed to be like 25%. Then the treatments attached to bc, chemo and rad. Where is the cure? How can billions of dollars be raised for research and yet we are still sitting with chemo and rad for treatment. It is crazy frustrating because it seems that no matter what your lifestyle was like you couldnt have prevented getting it. I personally feel trapped in this whole process and my life is on hold.



Six wks of radiation! Six weeks of driving 1 hour up and 1 hour back home for 15 mins of treatment. It just seems that the process hasn't developed in proportion to the money devoted for the cure. Please Lord bring us a solution to this awful disease. Whether it is breast, prostate, lung, colon, thyroid, whatever it may be.

seacretgardn

Good morning ladies, it's cold in NJ today, gonna be a long winter.



Darlam, can I ask you what supplements you are taking instead of the claritan? I want to reduce my need for extra meds as much as I can.



Market I did have a terrible headache for the days I was on the steroids, first day my head feels better. I was also surprised to find a very stuffy sinus feeling too which is also better.



I feel like I'm 100 years old, my focus now on what's goin in and what's not coming out! Very exciting, so far tried benefiber, chia seed, senecot and yes, even prunes. Won't dare leave the
house today, (sorry).



But most of concern is the burning in my bladder, most likely from the cytoxan, and I've been really careful to guzzle water, not easy when you're nauseous.



I've had bouts of interstitial cystitis for years and have to avoid all triggers, coffee, most teas, sodas ESP diet, o j, alcohol, (I do break for the occasional margarita or sangria!)



But if the cytoxan has a cumulative effect, I don't know. The IC can be pretty debilitating.



Sigh, some moments, it's just too much.



Thank you for letting me vent. Again.



Laura

FLislander

Hi Seacret I had last treat Tuesday and yesterday I went out with kids and ended up with a blueberry smoothie, which I have been trying to avoid antioxidants, but I figured fruit was ok....let me tell you my bladder flushed yesterday like it had been holding for days... Constipation still a prob but I felt slot better. Might help bladder

Gator65

I just wore a v neck t shirt and a zip up hoodie. They did the same as mardibra

rachelvk

Whatashocker - I'm with you. I've usually been supportive of traditional medicine, etc, but there are times now when I just don't get it - there are so many foundations and groups supporting cancer research now. I realize each cancer has its own peculiarities, but there has to be some common things about cancers that all this research has helped uncover. It is amazing how little we still seem to understand it and how to knock it out. On the other hand, these cells are basically 'us' (our own cells) gone rogue - no wonder we have to go in and kill off so many 'good' cells to get the bad ones.

There was a similar discussion on another thread about the benefits of chemo (well, it turned into a debate thread, but it's been interesting) about trials and their limits. If someone came to any of us and said, we think we've found something that might work better (or as well as) chemo with fewer SE - will you take the risk and try it rather than going the traditional chemo route... would you? I'd like to say I'd do it for the sake of future cancer patients.... but for the same reasons I'm putting up with chemo now, I'd probably say, no, give me what you already know does as good a job as you've got so far (at least being triple negative).

I'm trying not to stress over all this before I even start treatment, but I really can't believe how much my life is potentially about to change.

Okay.... I'm forcing a smile and now it's off to get a few things done. Feel better, all. 

Mardibra

im with you Rachel, not sure i would be involved in a clinical trial unless i could do it in addition to the traditional therapy.  Im fortunate to be treated by a big cancer hospital that is actively involved with many clinical trials.  Although, they have not offered me any!  So, standard treatment for me.  Before my Dads death, he was part of a clinical trial.  It was an interesting process but ultimately didnt provide any benefit for him but maybe what they learned will be helpful for others.  As far as how my life has changed, it has changed big time.  But my attitude continues to be positive.  Its happened to me. there is nothing I can do to change that so show me the plan to resolve it, tell me why you chose that plan, let me do some research on my own, and expect me to be a complete pain the a$$ with all my questions.  Now that the plan is in place, tell me how to handle it the best way possible (SE's), and let me move forward.  Im not the type to crawl into bed and bawl but I do think about it constantly.  The most thinking i do is about the what if's.  My original plan was lumpectomy and node disection.  That changed after surgery.  So now its dose dense chemo, mastectomy, radiation, and then delayed reconstruction.  Cant start DIEP reconstruction until 6 months after radiation is completed.  Revision surgery will happen 3 months after original reconstruction surgery.  So what if that changes?  Ive come to figure out that there is nothing certain in BC treatment.  Its all a bit of a crap shoot.  So, I will continue to expect the unexpected and do my best to just roll with the punches.

 Sorry for the rant.  Thanks for letting me vent.

Kelloggs

This is the place to vent...let it out!  I am on day 4 after my first TCH.  I can echo what alot of you are saying...I just feel weird, kind of spaced out.  Not really dizzy, on the verge...maybe this is what they call "chemo brain".  I have been so lucky so far, a little consitpation that I got rid of this morning and some achey legs from the Neulasta that have prevented me from sleeping alot, and a bit of a headache.  Things taste funny but I still have an appetite so I will not complain.  I am supposed to go back to work tomorrow and I think I am most nervous about that.  My DH is laid off right now since he is a cement mason so I think I'll have him take me to work, just in case. One thing that really freaks me out is getting an infection...and I work for a group of pulmonary doctors where sick people are all day!  Luckily I am administrative and can hide in my office down the hall if need be.

Here's hoping everyone had a good weekend and that the SE's let up!

Whatashocker3

Thanks guys, I know there are tons if ladies going through this and we are all doing it together. I am glad I am not the only one wondering where the research will come into play and benefit us all. Day by day and hour by hour let's get it done and let's all move on. I go on the inspiring storiries thread often to lift my spirits as alot of women keep their successful battles to themselves to maintain their privacy and allow them to carry on with their lives I can't blame them. I think alot of communities should start a underground support group so the newly diagnosed are familiar with the successful outcomes and the long term survivors can enrich our lives with what they have gone through.

seacretgardn

FLislander, blueberries used to be part of my daily protein shake. Now I'm afraid to eat them!



Were most of you told to avoid fresh fruits/vegetables? Hoping it's ok as long as they're washed and cooked.



For those of you working during your txs I'm so in awe! I wanted to get through a cycle first to gage by. Just getting out for appts lately has been exhausting, and with this foggy brain I can't even imagine keeping pace at work. But these days and nights at home are long and lonely so maybe work is what I need.



We all have such different txs as well, even those with similar dxs. Makes it that much more confusing to know what is best. But Mardibra is right, it's a crapshoot.



Laura

Whatashocker3

Why are we staying away from antioxidants?

Mardibra

Although I have only had one tx so far, ive worked every day except tx day.  My plan is to work throughout.  My first experience tells me i can do it but I also know that AC has a cumulative effect.  Whats true for tx one may not be true for tx two, three, four, etc.  But thats the plan and my employers and coworkers (the few who know) have been very very accomodating.  Frequently offering to take care of some work things for me.  I have a client visit for two days next week which will surely wipe me out.  One of my coworkers has agreed to "draft" behind me to make sure he can step in if needed.  Very considerate given that this guy has a very full plate (more like a platter), My biggest request of him was to watch my shoulders....if i start dropping hair big time let me know! 

laurieloomis

Hi Girls..I'm glad I found the December group.  I get my port tomorrow, but not til 1:30, it's going to be a long thirsty day!  The plan is to start chemo right after christmas.  I'm feeling kind of nervous about the port and now that chemo is getting closer, the sleepless nights are getting more frequent. It's great to read all your posts, what a wonderful and supportive group of women..thank you!!

naan1004

Gator, my tongue is doing better, did frequent mouthwash and took naps when I could, think i was just tired, u should try to get some rest when u can that should help.  Good luck and hope u feel better.

seacretgardn

Whatashocker, it may not be so for all treatments, but I was told to avoid antioxidant supplements.



Found this on bco:





At a Glance

Antioxidants and Radiation or Chemotherapy

Antioxidant vitamins destroy free radicals, and free radicals help destroy cancer cells. Because radiation therapy and certain chemotherapies (such as Adriamycin) work in part by producing free radicals to attack cancer cells, some scientists think the vitamins might reduce this cancer-fighting effect. Many oncologists therefore tell their patients to avoid antioxidant vitamins during these therapies.



Everything I thought i was doing to help prevent this dread beast or at least to enhance health has to be on hold for a while.



Laura

seacretgardn

So sorry you had to join but welcome Laurieloomis.



I was nervous about the port, others on here too. Now I forget it's there. In the beginning it's more a fear of disturbing it. It was a little sore, more I think from the positioning of my neck.



Good luck with your port tomorrow, and you will find an amazing group of supportive, wise and compassionate women here as you move along your own journey.



This group and site is invaluable.



Hugs to you, Laura

etherize

Hello all,



Guess I might as well join. It has been such a difficult decision for me, whether to do chemo or not, since treating my HIV makes it SO complicated and dangerous. But here I am with an appt for Dec 19. It'll be 6 rounds of CMF if I make it all the way through.



Seacretgardn, I'm sorry to hear chemo is making your IC act up. That is one of the things I'm worried about. I haven't gotten an official dx yet, in fact I was in the middle of trying to get it dx'd or treated when I found out I had bc. When I've brought up my concerns to my PCP and MO, they just sort of brushed it off. "Drink lots of water" they say but that makes it worse.

rachelvk

Laurieloomis - Welcome. I'm sure you'll find some good information and support here. Getting my port was pretty uncomfortable, but a week and a half out, it really has just become a part of me. I hope you get a few good nights sleep over the next few weeks.

Laura - Boy, am I confused. I thought the whole idea of eating antioxidants was supposed to be good at preventing cancer, and I was glad when I really found I loved blueberries. I guess I should quickly eat up the small amount I have left and put them on hold. And I just bought a bunch of green tea products, hoping it might be drinkable during chemo. I'll have to ask my onc about that. Thanks for the heads up. 

naan1004

Laurieloomis, welcome, good luck with the port placement and any quesitons u have please don't hesitate to ask.

Laura, my onc told me last visit this past Tues to have no fruits or veges for now because I'm neutropenic, which means my White blood cell count and immune sys is very low and he doesn't want to get contaminated with any bacteria, he said just don't eat any even cooked until my levels go up, I'm hoping on my next chemo day, 12/13 this coming Tues my levels will be higher and I can once again eat some fruits/veges.

Whatashocker3

Seacretgardn



I did not have that info. Does that also include blueberries, strawberries and pro biotic yogurt? It is funny how some of this important stuff is not mentioned. I wonder if it is because it hasn't yet been proven????

evyl78

Hi all I hope everyone is having  a good week!  For those having treatment this week may it be with few se.  I  go tomorrow for bloodwork.  It is day 9 and I have good and bad days.  This is my second time doing chemo I did AC+Tand herceptin for a year.  I did not expect the pain I had I did taxol before but not with carboplatin and It was weekly so I ddint do the nuelasta last time.  The claritin did nothing!! My percs did nothing!  Nothing helped I had family pictures last monday aneI got sick as soon as pictures where done!  My DH wanted a family portrait before I lose my hair. again we went Monday and I barely got thru it but I dod.  My kids have been great I have a 9yr old daughter and 4yr old  son. I cut my hair yesterday me and dd went to get hair cut and I like it I am ready for it fall even though I am having a hard time emotionally with it seems harder this time.  I didnt have any mouth trouble before but now the tip of my tongue feels like its blistered just feels off.  My tongue has a split it in very weird!  The other se I am having that I didnt before is the vision change.   Sometimes its like everythinf is blurry or smokey foggy.  I have bad eyes to begin with and stopped wearing contacts after first dx.  I am thinkging as much as I dont want more appointments I have to go see eye dr.  For those worried about heart damage with AC it can happen and you need ot report all changes.  I am presently not doing herceptin because my ef is down.  I have an appointment Tues. with my new cardiologist going to talk to him about putting me on Coreg. I was on it before and my ef went up but I was stupid stop talking it and didnt see a heart dr. in a while I had just started seeing this guy right before get dx again because I wasnt feeling right for some time. 

seacretgardn

It seems there are two different concerns as far as foods and/supplements.



I was told by the onc to avoid antioxidant supplements and herbals, however, not food sources.



I was also told to eat only fruits and vegetables washed and prepared properly, avoid salad bars, etc.



Naan, you mentioned that since you were found to be neutropenic (low white cell count) that your onc cautioned you not to eat any fruits or vegetables, even cooked. I hope that changes for
you very soon. I have to say, I was surprised that even cooked were off limits. Were you able to eat canned veggies?



Whatashocker, no one said no to the berries or yogurt, my only concern with the berries is I was using frozen, and I can't really account for how they are washed.



Etherize, I'm sorry for what must be a very difficult decision for you. I wish you much success
and minimal SEs with your treatment. Yes, I got the same reaction when I asked about IC, drink lots of water, which I always do. Not much else offered in the way of prevention. I only hope I bounce back between txs.

Blessings and a good week to all, Laura

Josie4

Hi everyone. I will be getting my first treatment this week. I just turned 40 today! I have 3 young children. I was diagnosed lateOct., had a BMX late Nov and now have TEs. My Oncotype test came back as a 25, so here I am. I've read every post here and I appreciate your willingness to share what has worked for you.



I'm shopping for items this week and I have a few questions. Regarding hair... Has anyone heard of The "underhair" from www.hatswithhair.com ? I'm thinking about cutting my hair short and sending it in to this company to have a "underhair " made. Also, has anyone heard of www.planetbuff.com? I'm wondering if I should get the original or the slim hair buff?



I'm so scared...but find that since I try so hard to stay strong for my family, it's such a relief to come to this forum to share my real emotions and concerns.



josie

naan1004

Laura, i asked my onc about the canned type and he said stay away from all of it for now and once my #s go up i can once again have some. 

Josie, welcome, although what u have is not worth celebrating, being among others who are in the same shoe as u will be worth celebrating.  Happy birthday, I'm gonna turn 40 in May, we're almost the same age, I too have 2 small children older one is turning 9 in a week and the younger one just turned 6, both girls so am concerned they may have to be careful in the future.  We're all here for u haven't heard of any of those hair products, but I'm sure someone here has, if not u may want to throw the question out to the Nov 2011 group they are a little ahead of us, so...

keepnfaith

I am new to the December group too. Actually, I'm new to all this. Diagnosed Dec 6th, ct scan, bone scan, blood work ekg done on Dec. 8th, Port put in on the 9th. I start chemo on Wednesday the 14th. I feel lost, and a bit scared with how fast all of this is happening.

My onc suggested 12 weeks of chemo before surgery. Trying to shrink it first. The goal, I believe is to have lumpectomy. Was told the decision is mine but that is his recommendation. I don't know yet, still trying to gather information and educate myself on all this. 

naan1004

keepnfaith, welcome, you've come to the right place as far as getting info and support throughout treatment, surgery, and your journey.  I will have my second treatment tomorrow, what treatment will u be having, I'm due for 4x AC and 4x T every 3 weeks.  Depending on what treatments u will have, SE will vary and every person is different so, hang in there.  The fast pace is better, doesn't give your cancer time to grow, got to get started sooner the better.  Before u start may want to check the before treatment thread for a shopping list of things u may need prior to starting, don't bet on going shopping right after chemo, u need some down time.  If u need any suggestions many ladies here have plenty to share.  Good luck and hand in there!

Kelloggs

Keepnfaith - I understand just how scared you are. That was me a month or so ago.  I went from being a healthy 45 year old newlywed to mammo, ultrasound, biospy, lumpectomy, re-excision, port and now chemo in like less than a month!  I was terrified...and still am, although a little less every day.  I had my first chemo on Dec. 8th. I feel like I should not complain because I feel like I got off easy on the SE's. I have the bone pain and headache from my Neulasta shot but the only real SE from the TCH seems to be this fog I am in! I went back to work today and made it 7 hours.  If I could get rid of this haze I am in I think I would feel alot better.  Hopefully the feeling fades fast.  I'd like to have a bunch of good days before I have to put myself through this again.  WOW....venting does feel good.

Good luck to all the new Decembers, we can make it through this together!