Is there a July 2011 group?

Hope all those in the chair with me today will have minimal SE.

Rabbitt- I just had #5 of taxotere/cytoxin and my side effects thus far have been pretty much what Phillybird described.  In addition I had some internal ear water echo (spent a day puliing on my ear and tilting my head around thinking it was outer ear from the shower) It only lasted several days on cycle 3 &4. My eyelashes have really thinned, gave up on the LGFR mascara as it highlighted the long ones(they left dots above myeyes), and then the gaps were more noticable. My eyebrows thinned some but are ok, use the pencil some. The products were cool and it was fun to go to the class. Yes more gas,and burps, but have not had neuropathy prob.The doctor specifically asks and checks on that each visit. What is weird the last two cycles the Monday before the Wed chair I have gotten really bad headaches, extremely tired, nausea and then wake up Tuesday feeling fine. I have been more cummulative tired, so not as much exercise. Have gained 10pds since first chemo-dr good with that, i"m not thrilled. Will need to walk now that it is not 98 deg or raining. I also have hot flashes, dr said today that is def a SE. Also my tastebuds have been slow to come back this last time. Food doesn't taste bad just not flavorful. Since you already have had FEC I hope that you won't have that many new SE. Most are very workable.

Misswim: I had the blood transfusion and agree it wasn't that bad. I really believe that had I not I would have been in the hospital that weekend. Ironicallly I have been a blood donor and had just donated 3 months before dx. 

Thank you all for all your encouragement. I remind myself when I get tired of being tired that it is for the long run. The sacrifices now are worth the years that we are going to enjoy when  the treatments are all over. We have so many family and friends that are praying for us and counting on us, that it does inspire when we are feeling crappy and tired. Thank you all for being there

 (would type more often except end up deleting somehow during the preview and get fed up with it and this time actually just retyped ..urgg)  Have a good day!!!!!

Hello ladies. Just realized I haven't been on since the 12th. Lots of reading I need to catch up on. Hope everyone is doing well. I am in the chair today for #4. Really not looking forward to it. It seems like each treatment the SE's are compounding. After the last one I have spent the last 3 weeks exhausted but continue to forge on becausei have to. My appetite has been poor but I'm gaining weight. Ugh.



Hope everyone has a SE free day. After the chair we are having a small bday celebration for Josh.



Tina

I have been so tired this week -- even the nights when I get more than three hours sleep aren't doing it for me.  I'm kind of wondering how much more fatigue I can take on without falling over. LOL  So at work today, where there is no place to put down your head for a nap, I decided to create my own workspace napmaker.  I took pictures of my eyeballs with my iPhone and printed them out. I cut them out and put them in my glasses.  Now I can sleep at my desk for a short nap (during a break) and passersby (we have an open office plan) will suspect nothing.  Well...they might suspect an alien invasion...it does look kind of weird.

Thought I'd give you all a chuckle.

So they took me off the steroids completely. My bp was very high and I have gained a significant amount of weight. Ugh!!! They are trying the no steroid thing, think that is what is causing the problems. Altho they told me my normal SE's will probably be more significant 

Tina 

Misswim - Sorry you had to get a blood transfusion. I was hoping you wouldn't need it. How are you feeling now?

bcisnofun - What a sweet story about your son! I don't have any kids (), but my niece is 2 and the only one in my life that doesn't treat me differently since the diagnosis....I have been wearing scarves on my head and she doesn't seem to notice. Clearly it's because of her age. What a blessing. I love being around her.

Ellenquilt - I had a horrible night after chemo on Tuesday. I don't feel like I got even a wink of sleep. Last night was better though. Lol about the alien invaders. I am lucky I can work from home when I am working. When I was getting chemo for my molar pregnancy earlier this year, I would put my head down on my desk and time would just disappear. I know I freaked out my coworkers. So happy I can work from home now and lie down whenever I need to. Is that an option for you at all?

J-bug - My hemoglobin went up to 10.4 this week. I am hoping to get back to 11 soon and eventually back to normal. It seems that Taxol doesn't have as much of an affect on it. My rbc are still low at 3.1 though, so that will probably take more time. Congrats on getting your hemoglobin up through your hard work! Even as mine has been steady and even rose this time, I still get tired easily. Like you said, it's probably the cumulative affect of chemo. Good luck with #3 tomorrow! ONE more after that!

Rabbit - Sorry you've been having such a hard time with the shots. I remember givng myself daily shots multiple times a day back in May for my fertility preservation IVF cycle and it can get to be a bit much after a while. I ende up with a rash on my tummy from all the injections and probably some preservative in the alcohol swabs! As for B6, I asked my doctor about it because I also heard about it helping with neuropathy while on Taxol and he said there isn't really any evidence to back it up, but that it was okay to take it. I took it once, but my neuropathy hasn't been that bad, so I haven't worried about it too much. As for your first taxotere experience, it's pretty similar to Taxol I believe. I was a bit nauseous for my first one too, but the last 2 have gone much better. The nurses think it was just anticipatory nausea. Hopefully your next ones go smoother. For me, Taxol is always a 5+ hour experience in the infusion center plus I have my blood draw and doctor's appointment before, so I'm always there about 7-8 hours. Talk about long days!

Frances - Congrats on being done with chemo! Yeah! As for AI's, have you talked to your onc about Tamoxifen? That's what I'm giong to be on because I'm not menopausal yet and have no desire to be at only 28 years!

Rossileo18/Phillybird - Hope your LAST time in the chair was uneventful.Congrats on being done!

Mavinbook - Wow...December 1st is still a ways away, but I think taking things one treatment at a time is the best approach and before you know it, you'll be done! As far as what I've gained, I have gained much of the same things you have. I have learned to let some of the little things go. I normally like a VERY clean house, but I don't dwell on a little mess here or there and I deal with it when I have the energy. I have gained an appreciation for those in my life who have been extremely supportive and an awareness of those who just aren't as good of friends as I thought they were. I have also gained new friends here and locally that are also dealing with breast cancer. In many ways, I feel close to you all than I do to those in my real life because you are where I am and we can appreciate each other's pains and gains so much more. And of course my husband who has been by my side every step of the way.

Anne - Congrats on being done with chemo! I don't think 3-4 weeks is actually that long to wait for radiation as I've heard others waiting similar amounts of time. I think the doctors want to give you time to recover from chemo before moving on. I understand you wanting to get it over with though. I am not looking forward to Tamoxifen because it means no kids for at least several years, but I made it clear this week that I want to start it as soon as possible after chemo because the sooner I star the sooner I finish. You'd think that a few weeks doesn't matter in the grand scheme of things, but I feel it does.

Izzy - I just wanted to send you some cyber hugs. You're going through so much right now and doing it on your own. Maybe you can make a list of the things you need to do and go in order of importance? I decided that for me, I just needed to tackle ONE important thing every day and I'd be happy. If I can get to more than one, great. If not, at least I did one thing. I do have help from my husband though plus on partial disability, so I truly feel for you. And lol about the "but you look so good" comments. I get them too. I'm like, okay, I look okay TODAY, but you should see me during my chemo weeks. I almost feel like they're discounting how hard this is when they say things like that.

Khs113- You're done too! Yeah! Give yourself a pat on the back and treat yourself to something!

Yooper - I know exactly how you feel. Even with just one treatment remaining, I feel like they don't have much right to say ANYTHING to me if they haven't been where I am. I know they feel like they're experiencing my cancer with me, but they're not going THROUGH the treatment like all of us here.

Ralston - My hemoglobin stopped dropping after AC and has stayed steady during Taxol. My WBC have been higher since my first Taxol as well, but I'm still getting Neulasta shots. I am hoping I can get out of Neulasta with my last treatment. I have it at home already waiting, but would rather not use it.

Susan - Sorry you've been having such a hard time. It's harder now hearing or reading about people with stage 4 bc when I'm having such a hard time with Stage 2. I never thought I'd end up with breast cancer at such an early age or at all, but here I am and it makes it that much more real to me to hear about others who are faring worse with this terrible disease.

Ana - I have also enjoyed my scarves. I thought I would have NEEDED my wig, but I've barely worn it. It's like with scarves, I am staying chic and raising awareness. I get looks, but I'm over it. My hair has been growing back in the last month, but I think it'll be a while for me before I give up the scarves too.

cshell - I agree with you. It's good to remember that we're in this for the long run.

Tina - Welcome back. Sorry it's been so rough for you. I hope stopping the steroids helps. How many more treatments do you have left?

I hope I responded to everyone. It seems like even when I'm gone from here for a few days, there are a ton of posts to catch up on and with all the scrolling up and down the screen to read and reply, I may just have missed some posts, so sorry if I did!

AFM - Had my 2nd to last chemo on Tuesday. I felt okay yesterday until I had to give myself my Neulasta shot. I knew this so I went swimming BEFORE the shot! Today everything hurts as expected. My skin hurts to the touch and my muscles ache and I'm having trouble swallowing, which happened last time too. The tenderness will hopefully go away in another day or so and then the severe bone pain will kick in from the Taxol. I am hoping to hit the pool again when that happens to see if it will help. I'm going to be in pain no matter what I do, so I'm going to try to do something to keep my mind off of being miserable. I have 12 days until my LAST chemo. Never looked forward to chemo so much in my life! And it better be the LAST infusion I EVER get! I don't want to become a 3peat chemo goer!

Rabbit, glad that you're doing ok on the taxotere. One down three to go!



Time in the chair was uneventful. Said goodbye and thanks to the nurses and hopefully left the infusion room for the last time. I was sooo happy, but reality has kicked in today. Neulasta shot and then a week or more of the nasty SE. I don't think I'll really believe I'm done until I see some hair growing back.

Sitting in the chair hoping it goes better than last time. Learned something interesting from the doc...he said that the Taxol bone pains are really an allergic reaction to one of the bonding agents used. He suggested I could try an antihistamine this time to see if it helps. I'll try it. If it doesn't, oh well. I'll just take the pain meds again.



I talked him down to half the benadryl I had last time so hopefully I won't feel so crazy this time.



Hope you all have a good weekend!

jbug: I feel the same way  -- my spa day is the only time during the week when I don't have to DO anything.  I love it and I'm sure I'll miss that part of it. If you can get the contract work I think it would be less stressful for you before surgery. JMHO

Yooper: They use something called Cremaphor(sp?) to bind the TAxol so it can be administered via IV.  I was allergic to it so my doc put me on Abraxane, which is still a taxene but is bound with an organic compound. So far so good with that.  We also do a very slow infusion to minimize reactions . My prechemp premeds are Zanac and Decadron the night before. Zanac, Decadron, Allegra and Benedryl the morning of, along with compazine when I get to the spa and then they give me more Decadron, Benedryl and Zantac. I'm stoned until Saturday night. Sometimes until Sunday.  (There are those who say it's my permanent state of normal...)

KK 11: I hear you about the sleep problems. They are driving me nuts and making me chronically exhausted.  I'm working, but would love to just leave two hours early every day to go home and sleep. Not a realistic option though, but I might do it occasionally. Otherwise I'll need a big neon sign on my car that will say in flashing red lights "Sleep Deprived Driver -- keep distance."

In the chair finishing up with Herceptin cocktail as I write this.  Relaxing day as usual, spent primarily knitting with my Cancierge Kathy, going on Skype with a few friends from work and just goofing off.

The weather is good today. Lovely in fact.  If you're a duck. I've seen enough water to last me until Spring.

Hope all of you have a good SE free day!

misswim: What is involved in the Metformin trial? I took it for years for polycystic ovary syndrome. I did not have diabetes. The biggest side effect was diarrhea. It got better with time, but I was supposed to take 2 tablets and whenever I would back down to 1, it took forever for the gastric issues to adjust. Finally, I just stayed on 1 tablet for years. Other than that, I had no issues with that drug. My family doctor took me off it for this chemo time period to avoid having too many toxins for my body to handle right now, but I did hear a little inkling about it being in a trial. What is the theory behind it?

So, I went in for chemo and came out with a UTI. Right in the middle of treatment I went to use the bathroom and said - uh, oh that feels wrong. I was having horrendous hot flashes too. She took my temp, which was good. Then she gave me a UTI test, which was positive. Other than that, nothing exciting today but watching some indulgent but boring television and doing word searches and napping.

Every Taxol treatment I am shaking cold during the premeds. Then, I get a couple of warm blankets and drift off to a nap and wake up burning hot. Does anyone else have that experience? It has happened during all three Taxol treatments, but no temp.  

Thank you kk11 and ellenquilt for the job opinions. I appreciate the input and it sounds like we are on the same page. I am not as panicked about this one now because the chemo (mostly the A/C) was what was really making me not think clearly. I know I will need that surgery time (and I have been keeping 4 wks in mind), but after that, life sounds like it could become a bit more manageable again.

I appreciate all the support here! I ran into a lady at the DMV (getting a disabled tag for those horrible Taxol days) and her husband was recently diagnosed with cancer. They found 14 tumors in his brain and some in his lungs as well. He is not using any support system yet except family and I think that would lower your chances of survival. We need support (the kind that we feel is the most appropriate for our needs) more than ever right now. Thank you all!! 

Off to make dinner and an early Ambien-induced bedtime tonight.  

Hi all, Been away from the posts for 2 days and have a lot to catch up. Misswim, Ellenquilt, Ellen, Tina, Rossileo, yooper, jbug - SEs stay far far away! Jbug - sorry to hear about UTI, absolutely hate it, hope this is fixed now.

Kk11, I have been on tamoxifen for the last 5 years and its effectiveness is lost on me and that's how I got my second primary. No choice but to go for the aromase inhibitors therapy. All the while I thought I have menopause because I haven't had my menses for the last 5 years and I had all the hot flashes etc many years back. But bloodwork came back showing I have not menopaused yet!

Been busy the last few days, it's so good to be done with chemo and getting life back to normalcy slowly. Was out seeing radiation onco, getting my chest marked for radiation coming Monday, meeting friends for lunch and tea. Yesterday was my youngest gal's birthday and we brought her to our Night Safari which is an award winning zoo. I am so glad I have the energy to spend time with the family and we were there from 8 pm till midnight! The gals were thrilled and even more happy they are not in bed at their usual time but out playing:)

bcisnofun: I feel for all of us who have lost friends in this battle. It is a tough reminder. I found out that a work colleague died the other day from liver cancer. His entire battle from diagnosis to death was only a few months. He was such a crazy and dynamic personality and amazing photographer. I told a friend at work though that as sad as it is, I was reminding myself that that is his story and not mine. I have a totally different set of issues with my cancer and so many do survive that I have to believe - why can't I be one of them? The odds are really good, especially since mine is breast cancer, not liver cancer like his. Like I said, I know how sad this stuff gets and we have to grieve, but I hope those thoughts can help you not stay stuck in that place.

Tina - shucks! What a Friday night! BC sucks. Pray it's nothing, just a reaction to some Meds you are on. ((((hugs))))

hi everyone only 2 days away from the forum and insanity, lots to catch up on.

For me, I've had a very rough time with docetaxel, day 4 now...day 2 and 3 were horrible, the worst with upper GI problems. I'm 99% sure it's my hiatal hernia, I had severe chest pain, went through 1/2 bottle of maalox, a dozen tums, a few zantac and my usual 80mg of omeprazole a day, and it still broke through all that. I spoke to the PA and she said to see a GI dr. the soonest I can get in is Oct 26th and they won't put me on the cancel list being a new patient, so I'll call every few days to see if I can get in sooner.

I started experiencing the bone pain late yesterday, like growing pains, my nail beds are sore and tender (and I iced my fingers and toes and have been taking 3 different supplements to supposedly help with that) I got almost no sleep last night. Ok enough of me bitching!

ellenquilt, I LOVE the pic, that is hysterical! You have got such a great sense of humor, wish we lived closer to each other, would just love to meet up one day.

bcisnofun, I am so sorry to hear about your friend, it's a horrible disease, it sucks, but all we can do is think positive and pray and hope we beat this nasty thing.

Tina,  please update us, what's going on? 

Going to soak in epsom salts, will catch up later

xoxoxoxo 

Hi Luebbsgirs--Good thing you went to the ER. Pneumonia is nothing to mess around with especially when you're on chemo. Really,really rest and take it easy. I had it 10 years ago when I was really healthy and it came back for a second time after my first round of antibiotics. So just let everyone else take care of you and let your body recuperate. Take care.

BCisnofun- I am so sorry to hear about your friend. I try to be very upbeat about the future and knowing that I am throwing the kitchen sink at this, but it is hard not to obsess about recurrance with all we read and the stories we see everyday on this website. Thing is, many of the stage 4 ladies have been very helpful to me and answered many questions for me. My onc and pschy tell me "stay away from those forums, that isn't you." No, maybe not now, and hopefully never, but I know that I will never be the same, that that could be me one day, and that these women live with such dignity and desire to help others that I can't not give my support, even if it is in the form of good thoughts or a cyber hug.

I met a woman in chemo the other day, stage 3b Er-/PR-, Her 2 pos from the start, who was a year out from chemo and was found, through many symptoms, to have a brain met. She had cyberknife, is having herceptin, and radiation, and she has a child my son's age. It was so hard to hear her story because her son is just like mine, same age- he thinks, ok, so you had treatment, moving on. Luckily, for me, yes, so far. But how do you have that conversation with your kids when it is not the case? Hope I never have to learn. It plays tricks on the mind. Just have hope and confidence in yourself. As my surgeon and onc said, here are stats, but you are "100% you". You have the power to take great care of yourself after treatment, to change your unhealthy habit, to exercise, to take supplements, to do many things that are studied to prevent recurrance that don't figure into the stats that we are given by a computer that spouts out numbers. I had a high intermediate oncotype. Chemo was of great benefit to me according to the study. I hope so. I plan on ovarian ablation and an ooph, vegan diet, serious overhaul of stress in my life, lots of exercise. Those things are not figured into my recurrance risk and I believe they will help me even further.

Sorry to ramble, but your post made me really think about "after chemo" and what I can do to be in charge of my health.

J-Bug- The metformin trial is based on the use of metformin to reduce recurrance risk. I am not sure about the science of it, but will find out alot after meeting the research nurse on Thursday. Will report back!

Tina, feel better!