Anyone starting Chemo in Feb?

Leah, I'll be thinking of you (even more than usual) and Jeff for better and better results this week for both of you. What an ordeal for your friend, too. He must be so appreciative of you being there for him.
I am so glad to read that you are having great family times and feeling your life is getting back to more "normal". Take care of yourself.

Marsha, you are so right about the way we can track each other's symptoms and SE's almost to the day. And the acceptance of having days where we are not a 100% of what we used to be (but they'll be back). My DH is like yours: does not want me in crowded places to be exposed to germs I do not need... I have not done the grocery shopping since dx (12/18)... and I discovered a very efficient shopper in Peter who would never do the shopping before. For the dishes and cleaning the kitchen, that has always been his duty since day one: I cook, he cleans... I would not trust my hands for washing china, right now... still a bit tingly... And for the rest, we share, we've never been maniacs when it comes to house cleaning, our tolerance threshold is pretty high, so we get to it when it really needs to be done (with 2 doggies running around and playing together all day, anyway...). Mowing is going to be a regular chore again (for DH)... boy, the lawn is growing like crazy. As for the rest, like you, mission number one: recovering from chemo and doing what makes me happy (I have always been a very easy to content type), I am enjoying reading again like I had not done in ages (was mostly reading medical stuff when researching a topic before translating).

I wonder how Taxol/Abraxane works its way through our system. This morning, I feel much better than yesterday, aches and pains wise... I took ibuprofene last night, and it must have worked some. I did my longest walk yesterday, though, with my adorable neighboor, a wonderful woman, and we were gone almost 2 hours: came back with blisters on my feet I was not even aware of, in spite of very good shoes. I noticed that I have very often sweaty feet these days, new to me (chemo or menopause?). The little gardening I did on Saturday gave me blisters on a thumb although I was wearing gloves to rake... our skin must be extra fragile, right now... My nose bleeding has increased this time around (from Avastine, I believe, not Abraxane), although the sinus congestion and runny nose have been much less than with AC. I would suspect that even if we are "done" with AC, AC is not done doing its job, and we have now the remnants of it plus the taxol SE's... If it does not get worse than this first tx, that should be quite manageable... May 22nd is my last Abraxane...

Last year for our 25th anniversary (May 14) we planted a snow white crab-apple tree... and since we were spared by the storm, we can today marvel at its beauty, in full bloom, packed with delicate flowers that did not have to contend with more snow and freezing temperatures... It is such a cute little tree, it is uplifting to see the resilience through the Colorado winter and the exhuberance of vegetal life, renewal...

Time to get the doggies for their walk...

Hugs all around and special thought for those of you visiting the bar this week.
CatherineH

Hi all!

Leah - it sounds like you had a great time! You mentioned vision changes, yes, it's due to chemo. I was due for an eye exam and was told to hold off until after chemo. I dont know if the vision "changes back," but yes, it supposedly changes. I'm so very sorry to hear about your colleague. Will definitely keep him in my thoughts and prayers.

Marsha - guess our guys not only share the same name, but the same attitude. Only mine wants me to get out more, so the new thing is for him to "take" me to the grocery store. I do use the little hand wipes they have for the carts now. But, he's been doing 99% of the cooking and cleaning. I second Hillary's question; did you take tuxedo pix? We want to see!

Hillary - I cant believe how little sleep I'm getting either! Now you know why I'm always whining about fatigue! It's frustrating, I'm exhausted and go right to sleep, but if any little thing wakes me in the middle of the night, I cant go back to sleep. I have started taking tylenol pm on the days I take decadron. That is helping quite a bit. I really do not want to take sleeping pills, but the Onc and I will talk again if this continues during Taxol.

Catherine - about the blisters....I dont know if this is related, but I've noticed since A/C how easy I bruise or for something to leave a mark. I wore a pair of shoes 3 weeks ago that left a slight mark on my foot. It's still there! At my last tx the nurse said that it's common. The chemo makes healing of bumps and bruises slower. My chemo buddy at work had the same issue. He injured his foot on chemo and he said it didnt completely until he was done with chemo. So, maybe you have chemo blisters?

Melanie - I'm so glad you had fun! It was a pretty good race with an exciting finish. You'll have to let us know when the documentary is supposed to air. I'd love to see it.

Vegas - are you out there? We need to hear how you did today! Please check in and let us know!

Oh! I ordered the Livestrong Survivor notebook today. Have you seen it? It's one book to organize everything medical. It also has inspiring survivor stories, places to take notes at Drs visits, and other handy info. Pretty cool. It's free, you just pay shipping. I have all my stuff in a manilla folder right now and I know I'll get a lot of use of this. Also a nice way to file it all away should I ever need access to any of the copies of the reports, etc that I have. You can find it on the Livestrong website.

Bumping up tomorrow's bar reservations in the following post.

Take care everyone. Have a great night!

Carynn

Carynn,

The place where I get chemo recieved a grant of some sorts and has a 3 ring binder with all this information about dx, chem, surgery, akternative tx and other things and the have slots for business cards, patholgy reports and other things. I recieved a few of them from my doctor and the facility and I have an extra one. If you are interested I can send it to you. If you are not then I can send it to anyone that is interested,


Kim

Catherine what a wonderful anniversary present to see your snow white crab apple tree in bloom.
I was reading your post on the nutrition link. You have really always eaten so healthy. I was thinking my diet(which has been healthy off and on with lots of sugar
addiction) was a major factor in breast cancer,however you haven't eaten much sugar at all. I just don't understand. I am trying to eat more healthy anyway. Especially after reading about sugar feeding tumors. Horrors, I must quit sugar.

Marsha, how great you have such a wonderful husband. You and Hillary. My husband is great too. He does most of the cooking and we grocery shop together. Of course I am not immunosuppressed yet. He has already said he will take a list and do the shopping. He likes to cook. We are blessed.

Vegas, are you alright? Thinking of you.

Leah, so sorry to hear about your friend. I was reading in CURE magazine about dietary help for pancreatic cancer. I am sure you are a great support for him.

Husgs to all, Sammie Kay

This has been an incredible emotionally up and down day for me! Started by calling the onc's office this morning to see when I should start taking the prescriptions of steroids and tummy soothers I was given last week (thinking it was perhaps this morning) and was told I should have started it three days ago! Would have been nice if someone had told me that!! But my onc still wanted to see me and do a "post fever" check up and then reschedule for the taxotere on Thursday.

Well, I went in with my hubby and since we had "extra time" I started asking questions about the actual efficacy of taxanes with my diagnosis. All along I knew that the AC part of chemo was a "must" as the recurrence risk reduction was substantial. And I also knew I would be taking the hormone therapy afterwards as again the recurrence risk reduction was significant for me with my 99% estrogen positive tumor. But I have done a lot of research in the past few weeks on taxanes, and from my reading I had figured the taxanes were only perhaps an additional 3% recurrence reduction but with an equal risk of developing leukemia and/or permanent neuropathy based on my personal stats.

Well, long story short (oops, too late!) my oncologist confirmed the EXACT figures I had come to in my own research without me saying anything! My husband was floored, because he had been totally adamant about me doing the whole chemo treatment thing before this. But when he heard the relative risk/reward, he outright asked the oncologist what she would do with my diagnosis. While of course she would not say that she would not do it, she DID say that even though she was a physician, she only went to other doctors for treatment if she was dying. Then she also said that if I had wanted to refuse AC or the hormone therapy she would have been jumping up and down yelling at me, but with the taxanes she would not do that. And THEN she said she loved working with informed patients who really understood their treatment choices. It was definitely more in what she did not say than in what she did say, as of course she can't say "I don't think you need to do it" which would open her up to horrendous liability. But after the whole conversation, my husband and I agreed that, especially with my history of anaphylactic reactions, the potential benefit was not worth it in light of the possible repurcussions.

You could have totally knocked me down with a feather, because this was the last thing I expected when I got up this morning! You know how you have to get yourself all mentally psyched up when you are going in for a treatment? You don't WANT to do it, but you know you have to, so you just "do it." Then all of a sudden you DON'T have to "do it," and it is totally disorienting. I wasn't sure whether to laugh or cry.

Now we are waiting for a month to recover fully from AC and then we are progressing ahead with hormone treatments with a biphosphonate to help with osteopenia. Again, it feels pretty surreal to be taking this step all of a sudden when I was all geared up to go full force with chemo. But perhaps it was karma that I got the fever in the first place and then in the confusion caused by the delay the nurse forgot to tell me when to take the premeds. Because if I had not had this extra time today, I probably would not have gotten into this detailed conversation with my oncologist at all about the risk/rewards of taxanes for me personally.

Perhaps I can now be the guinea pig for the February chemo cruisers on the effects of the hormone stuff. I will be taking an aromatase inhibitor, probably Femara, as I am post menopausal.

So, what do you guys think? Part of me is still scared not to do the taxotere, but on the other hand, I am just as scared to do it after my discussion today. What a crazy turnaround! I think I am having chemo brain freeze!!!

Morning!

Hi Kim! It sounds almost like the same notebook. I wish we would have talked before I ordered, but it’s ok. I do like the Livestrong one and I know I’ll get lots of use out of it. I know when I’m done with chemo and have to go back to the Rheumatologist; he’ll want some of this info too, and it will be nice to have this one little book to bring. If the ladies here don’t want to pay the shipping on the one I bought, but are interested, maybe they can take you up on your offer. Like I said in my post, I like the way that they are organized, and when we are done with them it’s all in a nice, neat little package to be stored.

SammieKay – IMO, I think just plain old chemo without the extra pills (decadron, etc) messes with some of our sleep schedules. Part of my problem too is that I get up between 4-4:30 for work and am in the office by 6-6:30. If I didn’t get up so early and something woke me up at 3:00, it would be easier to get up for a while, then go back to bed. But in my case if I’m up at 3:00, it’s only an hour or so before I have to get up anyway. Sigh…

The vision changes with me haven’t been too bad. I broke down last year and finally got bi-focal contacts. Loved ‘em! Now, I can’t read fine print with them (but like before can without them). Argh! But, I just went back to Walgreen’s and got a pair of reading glasses. This will do til chemo’s done. BTW…good luck at the bar today. Don’t forget to let us know how you’re doing!

Hi Carol! Glad the neuropathy has lessened. To answer your question, I’m trip neg, as are at least two others on the Feb board. Speaking of which, want some good news? Read the info No Surrender posted in the triple neg section here: http://community.breastcancer.org/ubbthr...5863#Post586891

Vegas – I can only imagine the roller coaster ride you took yesterday! I know a woman at my husbands Elk’s club who now has become a friend, who had b/c 2-3 years ago. She had surgery first and was supposed to follow it with 8 rounds of chemo. She did her first A/C with no problem. Did her second A/C and had a terrible reaction that put her in the hospital. The decision was made to stop the chemo. She was happy, but really, really worried that she didn’t hit it hard enough with the big guns. Well, almost 3 years out, she’s still NED. I agree that things happen for a reason. You are probably right about your fever – bet it was a blessing in disguise.

Freethought- for some reason #3 hit a lot of us that way; almost like an overtired 6 year old who could cry at the drop of a hat. #4 didn’t affect me that way at all. What a lot of us did notice about # 4 was that there seemed to be more fatigue, and minor side effects were more noticeable. I get chemo on Thursday’s and by Saturday nite, I was just exhausted, zero energy, no nausea, but kind of a rumbling tummy, and a general un-well feeling. I know I didn’t drink enough water and when I started really slamming it on Tuesday, I felt almost instantly better. So, drink that water, then drink some more (right Sybil? ), and I bet you get thru it just fine!

Well, off to work; I logged in already and it’s shaping up to be a very busy day. Talk to you all later. Have a great day!


Carynn

Good morning all!

Jan -- I'm so glad that you commented on your experience about chemo for ER+ patients. I was going to suggest to Vegas that she pm you! I'm triple negative (like Carynn), and all that I've read says that chemo benefits us the most, while the ER girls have tamoxifen and AIs.

Vegas -- Congrats on making it through chemo ... now you'll get to tell our ER sisters about the joys of hormone therapy!

Carynn -- About three years ago, I finally had to confess that I needed reading glasses. I haven't been able to wear contact lenses since ds was born. Rather than bifocals (or trifocals!), I got "transition lenses". They seem to work pretty well, but sometimes I still need to take my glasses off to read something.

Carynn and Sammiekay -- I have not noticed any vision changes on chemo. I had just gotten my eyes checked before being diagnosed, and gotten a new prescription. If anything, my eyes are a bit better. Normally they are so dry, but on chemo, they are constantly watering!

OT, with my new prescription in November, I had splurged on these really funky new glasses. Frankly, I think that more folks notice my glasses than my hair!

Carynn and Catherine -- I have not had any foot neuropathy or pain in my toenails. I really wonder if it is because I wear slippers inside and clogs outside, giving my toes plenty of wiggle room. You might want to consider purchasing some clogs as "chemo shoes". I also moisturize my feet really well before putting on my socks.

Freethought -- Don't forget to drink lots of water for your last AC. Like Carynn, I lapsed (got too cocky?) and paid the price!

Carol -- Carynn and I are both triple neg on the same protocol -- dose-dense AC, followed by dose-dense taxol. What exactly is your protocol?

SammieKay -- On the same note, why are you doing taxol first? I've always wondered, but forgot to post (chemo brain). Carol's post prompted me to remember.

OK, here's my good news -- no bone pain today! I don't quite feel my age, but I don't feel like I'm 90 today. I do have a few more fingers feeling hammered. It does make it difficult to help ds with his Lego - LOL!

SammieKay -- {{{Hugs}}} for you at the bar today ...

Cheers,
Hillary

Vegas -- Do not feel guilty! You're giving bc your best shot! Let me know if you find any good spas ... I might be able to go with my sisters. My dh is NOT a spa person.

OT, another Netflix suggestion -- Beautyshop. It's a chick flick, starring Queen Latifah and Alicia Silverstone. Definitely light froth, but entertaining.
Next on my list is Calendar Girls, a comedy about a group of English women who bare all for a calendar to raise money for a local cancer center.

-- Hillary

Thinking about you and sending a hug today (((((((((((SammieKay)))))))))) Marsha

Vegas I am ER-PR positive, Her-2 neg in the right IDC 1.5cm with two negative lymph nodes, don't have the info for the left other than it wasn't invasive and only .7cm in size and in the lobal. (two diff surgeons due to second opinion.) Second surgeon said the right side took priority over the left side once it was found. I'm doing rads now on both sides for 33 days then its on to tamoxifin. If the genetic testing says I have the gene then my reaccurance goes way up to like 50-65% despite all treatments done. For now after rads and hormone treatments its drops my 25% chance of reaccurance to nearly half that. But as I said the gene could screw that up and doc said I'd need a masectomy down the road too with that gene.

My hubby took some pics of me and my wigs. So far most people tell me they like the redhead and the longer brown hair in the last pics. I've had alot of compliments in person with the last wig. I bought another one today off ebay like it in a lighter shade of color because I like the style so much on me!

SammieKay, how did it go?

Hillary, so far the tingling has been in my fingers (much better since yesterday), nothing in my toes... and I walk barefoot when at home (or in beach foam flip-flops, helps a lot). The bone ache did not last long (2 days, I did not even take much of anything).

Jan, your wigs are neat... enjoy them while you can or you'll have to keep your head shaved if you want to continue playing the various parts of your life with them, according to your mood...

Vegas, we have the same pathology, looks like (mine was IDC 1.7cm. 2 sentinelle nodes+, grade 3, ER+/PR+ -- stage IIa). I too went for bilat mastectomy for peace of mind (turns out there was atypical hyperplasia in the left side, which had checked OK on mammography and US, though)... I do not want reconstruction (I went 50 years of my life being the little ugly duck of the family with my left leg weakened and deformed by polio -- 1957, age 5 or so -- and it never prevented me from doing anything (except the "cat walk", I confess...): I danced, I played tennis 6 hours a week while still living in Paris, I did a lot of swimming, I walk longer than anybody else around me, with a small limp, but no pain, and a lot of resilience, best of all, 25 years ago, I married the sweetest man I could think of, and intelligent, with a great sense of humor... so I figured, remaining breastless should not impact the rest of my life too badly (I am 54). Treatmentwise, I accepted to be in the study offered to me because it was including Avastin for everybody in the study(anti-body which cuts blood supplies to solid tumors) and I got randomized to the Abraxane arm (taxol dissolved in albumine, which makes unecessary the premeds and is administered in 30 minutes). These 2 drugs are already in use for advanced/metastatic BC with promising results, and now, they are trying to have them approved for early stage BC tx. The onc has a formula to compute the risk of recurrence within 10 years (size of tumor, nodes, hormonal status, etc.), and with surgery alone I had a chance of recurrence of 46%, which goes down to 8-5% with this chemo protocol... now, I take all this with a grain of salt... future will tell how close or far off their forecasts are... if BC were to follow well defined, controled rules, we'd know it... So, in the meantime, I do my best to beat the odds, and enjoy every day... having been fortunate enough so far to really breathe through AC, and Abraxane is nothing to write home about either, so far (3 more to go). I will not have rads because of the bilat mast with clear margins and no axillary nodes involved.

Today was my 3 months post-op visit with the BC surgeon: she is a wonderful lady. She told me she had not had any patient yet doing so well after only 3 months (I believe it is just to be nice and a moral booster, but she is forgiven...). Then I had physical therapy, which is so nice and relaxing... One more session (5 total) and this nice Ph. therapist will be off to Las vegas to get married and continue her job there (specialized in oncology/BC patients)... lucky patients in Las Vegas...

Well, the best of evening to all of you (Netflix tonight is American Beauty, after Good Bye Lenin, which I really enjoyed...)
Hugs all around,
CatherineH

Hi girls, just wanted to say hi and let you know the 10th Taxol went fine. No reactions. I lost 4 lbs from diurectics. The answer I received from the onc.at M.D. Anderson about why I had Taxol first was "that is just the way we do it." He acted like it would have the same result as the reverse protocol. I read how informed you are all and how much research you do and I feel ashamed of myself for just taking my onc's word for what was best for my case. I am stage IIa. I was borderline for chem but because of the size of the lobular tumor, they recommended having it. I will only get 4 doses and it isnt DD, just 4 doses of reg strength, one dose every 3 weeks. Then, I am borderline for needing radiation. So I won't know until I see a radiation onc.
I am tired tonight. I will write more tomorrow.

My heart is heavy over VT. My granddaughter is close by at UNC(North caroline within one hour driving distance and one of her friends is tranferring to VT and was up there registering. my DGD was really upset and worried about her friend). My heart aches for these parents and grandparents. I had to stop watching for a while this morning, I just kept crying. It is just so close to home for my family.

Hugs and warm thoughts to everyone. Sammie Kay

Morning all. Another dreary morning here in MA, and we now have cresting rivers in the town I stay in. Will this weather knock it off for a while? Although they are predicting a very nice weekend...

Piper, the pancreatic websites are all depressing as hell. My friend forbade me from reading any of them. He also was told he had six months. 4 of them are up.
He did not have any good news yesterday. The chemo he was on seemed to have no effect on his condition, though it did not get worse, so I think that is a "result". They are going to try another chemo, 8 weeks of something else, given every week. His email to me did not give many details, I will get more later I am sure.
So I go into my testing with a heavy heart. I have had a "sneak peek", so I know my results will be good. I feel a little guilty- I know I should not- and I will shake it off. He is nothing but happy for me, I know it. Still...

NPR's Leroy Sievers has a commentary called "mycancer" and the discussions that have ensued from it are pretty thought provoking. If anyone is interested, you can start here http://www.npr.org/blogs/mycancer/2007/04/hitting_too_close_to_home.html with today's commentary. He has an interesting view, and the people who respond have really given me pause on new ways to view/think about this disease.

So today is breast MRI, mammogram and tomorrow CT scan to restage. Also regular blood draw day tomorrow. Yucks for tests and waiting around. Will keep you posted.

Love to all.

Thanks Vegas for the website! Kinda in limbo waiting on any news about the genetic testing results and whether or not insurance will pay for it yet.

The redhead wig and blond wig I got free from the American Cancer Society. Because I was able to "try out" the ACS wigs it gave me the incentative to want to wear a wig and gave me an idea what colors and styles should look nice on me. I was only going to do the hats/scarfs at first but now I want some hair on my head for a change. If I hadn't had a chance to try the wigs I may have just stuck with the hats/scarfs. Locally wigs are about 75$ starting price. With shipping on the ebay wigs I paid about $30 each. So far I'm getting the same results from my biker friends and my horse friends about the long brown one being the best one and the redhead next. When I tried the redhead one on I said this one seems to be a good shade with my complexion. I just bought another long one just like the long brown one that is supposed to be shades of strawberry blond/blond colors. I am surprised how lightweight the long haired wig is. The short brown one is a bit odd looking to me and not so realistic in person like my others. I got that one from a different seller. It was one that didn't look like the photo she had of it on ebay. I may just give it to the ACS. Here's a link to the ebay seller that I got the long brown one from if anyone is interested...my brown one is 3 shades of colors. http://search.ebay.com/_W0QQsassZthebeautystopQQhtZ-1

My rads doc gave me some pain pills to deal with the rad burns under my armpits. Said I have only 3 more wide field rads then its on to 8 boosts this coming Monday (aimed at the cancer areas only). Then my burns won't be getting any more rads so they can start to heal up starting Monday! Otherwise rads have really been a breeze compared to chemo. I don't have the fatigue yet even though I'm done with 22 days of rads now.

Hi everyone! Sorry I have been out of the loop for a couple of weeks, but as many of you forewarned, AC#3 really got the best of me. I didn't even feel like a real person - more like a "shell" of a person that couldn't do anything but lie in the bed. It took me almost all week to get myself together, and then right when I was feeling almost normal, it was time for AC#4 this past Thursday. So I am now at home recovering from AC#4, which although not as bad as #3, still has me quite tired and agitated.

After I had such a terrible bout with fatigue on AC#3, my onc. suggested that I receive IV fluids this time, as I don't drink nearly enough. So yesterday, I had 2 liters of saline over 3 hours. Since I did not get up to go to the bathroom even once, the nurse says I was very dehydrated. I am scheduled to get another 2 liters tomorrow.

I am just glad that the ACs are over!!!! Now for the taxol. Hillary, thanks for keeping me on the schedule during my hiatus - I am up for taxol#1 next Thurs 4/26. I will be checking in regularly to see what to expect, as I am very nervous about this next step.

Can I just say that I will be glad when chemo is over!!!!!!!! I am just so tired, some days I don't think I can take another treatment. However, all of you give me the inspiration I need to hang in there - thank you.

Steph