August 2010...anyone starting chemo besides me?!
Comments
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LIZZY - so sorry you have to wait again. GINGERBREW hope you have having a nice weekend with the granddaughter!! My WBC was low so I was told to stay away from crowds and sick people so I am pretty much housebound this weekend. Don't want to get sick though. I was also told my "baby" WBC was low too! Didn't know there were babies! CKPTY thanks for sharing your father's story.
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Yes, know there is a difference in size, spread, but also was lead to understand that the different surgery plays a part. So although both of us had lumps in the front, no where near the chest wall, neither of us had node involvement, she will have rads while I will not.
What I was really wondering is how much different chemo doses might be, that some people feel so unwell. Or if it is just how many extra things they give you for the se s. Or just eeryone is different........ (trying to compare the signatures and match treatments to condtions). Maybe I need a new hobby
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Hi All...
I was just informed yesterday, that my next chemo will be given on my birthday... September 14th...What a birthday... lol...
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SOHARDBNME - It is not an ideal way to spend your birthday I agree. As for me my next time in the ring with Mike Tyson (what I call chemo) is Sept 9 and my birthday is Sept. 12. I was scheduled to go to a free camp for women with cancer on a beautiful lake Sept 10-12 but decided against it due to having to deal with SE's even tho they are minimal I just didn't want to risk having bad bone pain, etc. I can go next year they say. I did get a massage at the onc office yesterday and it was heaven. I'm going to see about scheduling one every month. Anyone done Rikki (sp)? they offer that, acupuncture and some other non traditional healing stuff.
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GOOD DAY, CHEMO-SABIS!!!!!
Thanks to everyone for your support. I would have never thought in my entire existence I would be anxious to get chemo started!!!!!!
Kimmie: thanks for the support. I am just getting down, as so many have pointed out, about how long it all takes.
Ginger: I hope you have a good weekend with your granddaughter and that chemo brain does not continue to plague you. That is a rough chemo schedule, btw, especially when you are driving home at night in an unfamiliar city. I hope the next time you are home before dark.
Rachel: I flipped when I saw $40 per pill!!!! That would cost $1200 to fill it for a month. I just called CVS and for 30 pills it would cost $1739 as my insurance kept kicking it out as rejected without a prescription!!! How often do we have to take Emend?! Thanks for your kind words. I am trying to hang in. I know they are doing what is best. Yes, I do believe you and I can be a cost-effective glowing display in lieu of fireworks for our neighborhoods this weekend!
Lisaattheshore: That is really interesting about giving neulasta the day before chemo because then it is just loading the body up with white cells and, like you said, the chemo kills the abundance as opposed to the existing and therefore never really starts knocking on the bones to wring out some more marrow!!! Interesting. I am getting it the day after but I think I will ask about the day before idea and see what they say. It makes sense.
CKPTRY: thank you so much for sharing your dad's story and I am so glad he is there to babysit 13 years later! That was a great story and I am glad he is still with you. I know what they are doing is being thorough so they can help us but the road is long, my friend!!!!! MSKCC is one fine institution, btw! My mother had surgery there for what turned out to be a benign tumor. They were great.
Calamtykel: a typo on a PATH report?! SAY IT ISN'T SO!! That is just horrifying. Needless to say I am sure that was caught!
Zenith: thanks for your support and I have to say I STILL LOVE your avatar!!!!! That was so clever! A September 12th birthday!? That would have been a nice way to spend your birthday on the lake but I understand the SE's might make it a long weekend! Do it all...massage, accupuncture, reiki...do anything they offer. I have not had reiki but my friend's aunt was really into that and other holistic remedies (wink wink!!!) but she swore by it.
Sohard: YOUR BIRTHDAY!!!!!!!! Gross chemo on your birthday...that is all kinds of wrong! Hopefully your gift from the gods will me NO SE's!!!!! Well I hope your birthday is not defined by chemo. Do something nice for yourself. Good to hear from you.
I hope you all have a good weekend. I know it is not that we can all do a lot with depressed immune systems etc... but try to at least enjoy the weather and relax.
Your FEARLESS Leader!0 -
LizzyMack I only have the emend for day 2 and 3. Two are 55.00. Highway robbery I know, but everything else is generic. Also receive it the day of chemo via iv. It comes in a little Emend 2 pack.
Libray LIl
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SOHARD - So sorry you have to have chemo on your birthday. That SUX!!!!! Next year you deserve a huge party and a huge cake!! My birthday is coming up, too, but I will have the big chemo the week afterward. Yay!
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My dearest CHEMO-SABIS!!!!! (why do I vacillate between hyphenating and not hyphenating that word?! I can't even blame it on chemo brain yet!)
I think I will add a monthly birthday group! Why not?! It is nice to say Happy Birthday to your fellow chemosabis (there I go again!)!!!
Libraylil- thank you so much for telling me about dosing on the Emend as I can take the "for sale" sign off of my spare car I was selling to finance my Emend monthly prescription!!!!!!!!!!
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Sohard, sorry you have to have chemo on your BDay, that stinks.
Zenith- We share a BDay, I will be 48 on September 12! And like you, I will be having treatment number 3 on September 10....Happy Birthday to me!
Lizzy-I can top the typo on the path report. While I was reviewing my records, I noticed my breast MRI mentions a postoperative seroma in my right breast. Unfortunately, I had surgery on my LEFT breast! When I pointed it out to the oncologist, he just said he would call radiology and have them correct it. Personally, I was quite alarmed that they could make that kind of mistake!
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SoHard: I'll be having my second chemo that day too (Sept 14) so I'll be thinking about you. The American Cancer Society's new tagline for advertising is somethiing like "sponsor of more birthdays" so think of it as doing something that will bring you many, many more birthdays.
Lizzy: I got Emend (or something) in my IV with chemo, then came home with a 3 pack. Zofran after that if needed.
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The wrong breast? SPTMM62 ? Wowza! Your report read like it was on a specimen after surgery.
The day of my surgery I was asked repeatedly which breast my surgery was to be on. My BS also came in and signed the breast that surgery was to be performed on. It gave me an assurance.
The possibility of the path report being incorrect before surgery is just horrifying. I suppose we all should be reading our path reports before any surgery too just to double check basic facts.
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Chemo on Monday and I'm still having queasiness on and off. Does anybody else have this same symptom? I go along and then every evening around 4 or 5 I start to feel a little sick. This was exactly the way morning sickness went with me - it came in the evening! ARGH! I can't believe I'm going through this again minus the baby.......
I just took a half a compazine and hopefully that will get rid of it. But it is annoying that I am still feeling yucky on and off six days later..........
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Yikes! The incorrect path report stories are scary. In the statement from my $35,000 BMX surgery with SLN biopsy the pathology portion cost $14,000. You'd think with that kind of price you'd be guaranteed an accurate report.
Calamtykel - I'm sorry to hear you're dealing with nausea. Hope the compazine helps. I was a little nervous about nausea after my 1st treatment because they didn't send me home with any nausea med prescriptions. I had 3 days of Emend (day of chemo and next 2 days) and got Aloxi in the IV the morning of chemo but it turns out that was enough. I just made sure to drink a lot and eat small meals and that helped.
LizzyMack - I'm sure your skull is a non-issue and they're just being cautious. We'll all breathe a sigh of relief with you when they give you the good news!
Rachel5738 - So happy to hear your bone scan was clear!! It's hard not to worry about mets when we have aches and pains but it's nice to remember that we can have pain for perfectly normal reasons too.
Has anyone one else signed up for the Chemo Angels program? Here's the info...
Chemo Angels is a program dedicated to supporting people with cancer. In addition to providing helpful information and cancer related resources, we match patients who are going through the difficult time of chemotherapy with "Angels". The function of these Angels is - through little notes, cards and occasional small gifts - to bring a bit of cheer and encouragement.
I've received mail from both my angels this week and they're so sweet and encouraging. I totally recommend signing up if you haven't yet. It's an amazing organization and I would definitely like to give back once I'm on the other side of this cancer journey.
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well I am feeling a little better today both physically and emotionally. After a rough and painful night I woke up and my attitude was that I was pissed and in my head gave cancer the big FU; for taking a year of my life, for putting my family through all of this, and for testing me beyond my limits and let me tell you...It Felt Good:). So I guess with my pissed off attitude I just started moving around the house, took a shower and straightened up a little bit and before I knew it I wasn't feeling that bad at all. I feel like so much of this year has been out of my control and I am ready to take back the control and call the shots and for me that means no more chemo. I have already done it and surgery so me doing the extra chemo was because I was scared not to but after what has happened to my body this week I am more afraid of doing more especially since there isn't any evidence of cancer left in my body. So I will do the radiation as recommended, make some major changes in my diet and exercise(when body allows) and start moving forward. And I plan on telling my onc all of this when I speak with him on Tuesday. My DH is in complete agreement and support of this decision and right now, I truly believe this is the best decision for me. So that was my rant and thank you all for the kind words and support.
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Ginger-
The MRI was done after the surgery, the report was mislabeled. The info given for the right breast, was actually the left, not a really big issue at the time because everyone knew it was my left breast, but still.....a mistake that should not have happened!
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Youngmom- I truly and firmly believe that intuition is God's way of steering you away from harmful situations. If your gut intuition is telling you stopping is best for you, then you know best. Congrats on having the strength to trust your instincts! Its your life and your body, you chose.
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I found this while looking up stuff on Neulasta, that you guys would find it... overboard.
http://community.breastcancer.org/forum/6/topic/723025?page=1
Katherine- thank you for posting that again...Aloxi - that is what the research nurse said they were going to give me before my next chemo to keep the nauseousness away. I have to write that down in my book.
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CALAMTYKLE - I am still having queasiness around 1030 am and sometimes early afternoon. an ativan under the tongue helps. I am on day 10 and next chemo is thursday. Everyone - Robert Schimmel died in a car crash. He was a comedian and not for everyone but I enjoyed his comedy. He also had cancer and wrote "Cancer on $5 a Day" If only it were true....... I read an article somewhere that cancer is the most expensive disease you can have.
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Spttm: I asked before surgery if I should put smiley faces on BOTH breasts so there was no mistake as to what I was having removed! I know they are only human and can make errors but the ones we talked about today on this thread were BIG ones!
Rachel: Clean bone scan!!!!! yeah!!!!!!! I am so very, very happy for you! BTW, I am getting used to my wig! It is growing on me. Cha cha cha chia hair!
Youngmom: You do what you need to *especially* because this was elective chemo. You know what? Chemo is going to be there, forbid, you ever need it in the future. Your body is telling you it is too much, too fast so move away from it for a while. The body knows best...it is just not easy to heed those warning signs! You did and good for you
OK, celebrating a friends birthday tonight. I hope you all have some fun. I will be having a tall White Russian tonight! I wonder if I will remember his name in the morning?!??! Joking, girls!! The drink..the drink!!!
Your FEARLESS Leader!
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I found this link in the September Chemo thread... might be helpful for those not to lose hair and for those on the Taxol concerned about neuropothy.
http://www.elastogel.com/category_details.php?category_id=14&page=1
Hope it helps someone.
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zenith - good to know I'm not alone. The compazine is like a miracle drug but I have to go slow on it because of constipation - it seems that 1/2 is okay. Avitan is WONDERFUL - I had a fabulous night sleep last night because of it
I took it last night because the night before I was up at 4:00am cleaning the kitchen - I guess because of the steriods even days before I just was not tired. I went running tonight. It was hard - I was stiff and mostly I just power walked. But I needed to do it. I needed to clear my head and we finally have beautiful, clear windy weather here in the northeast. Too nice not to be out. No, I can't do what I used to, but I can still do a lot and I felt very empowered to feel like I have some control still over my physical body, regardless of the chemo.
I'm skipping church tomorrow as it's my "wbc low" day and with all the kids back to school, there'll be too many germs around for me.
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HI all---The Emend has worked wonders----seriously, That is a great drug. Going from puking and laying on the bathroom floor on Chemo#1 to actually feeling good and going out shopping today. I feel tired but other than that......almost forgot to take the other anti-nausea. What a difference. I have a tri-pack of it to take each chemo--one pill Day 1, 2, 3 (In Canada, $110 per pack. Does give you a bit of dizzy feeling---wouldn't drive with it though.
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Someone sent this to me on facebook - it's a MUST watch! I immediately thought of all my board buddies - I hope it inspires you too!
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Yes, the Emend is great but the problem I have with it is that it's a once daily. So for me, I'd take it at 8 in the morning the day after chemo, and within a few hours I'd need the compazine and avitan. But HEY - whatever I have to layer on it that works is WAY fine by me!
I had a much rougher time with the first chemo than this time. It's weird that the nausea sort of rebounds every so often but at least I know I can make it go away. I hated being pregnant - you can 't take anything for the nausea and it was horrendous. I had it all day long with my first one-- one week was so bad I pulled muscles in my stomach from puking. I was up all night every night that whole week. It was a horrible feeling to be so helpless with it. Mine did get better with time, but with my fourth one I was still queasy on and off for seven months. 0 -
Liz I'm sorry to hear you need to have another scan but hopefully it will just turn out to be some sort of residual from your prior head injuries. That is so frustrating to have your chemo postponed! Soon you will be able to take your place banging your drum at the end of our parade.
Youngmom I'm sorry and frustrated for you too, having the issue with your scars healing and having the chemo turn out so rough! It sounds like you are making the right decision for you to stop chemo. I'm guessing you still have some more Herceptin to do (are you doing a year of it?) and they say that makes a big difference for us HER2+ ladies so I would think that plus your prior chemo should be enough.
Lisaattheshore Regarding the rads, I think you are right about different surgeries. My surgeon said that if you had a lumpectomy you then should have rads, but if you have a mastectomy you don't need rads (except possibly cases where the tumor is too close to the chest wall to get good margins or something like that). As for the chemo, doses do vary based on weight and then there are so many slightly different regimens and variations in how we respond that accounts for all of our varied side effects. Same with the anti nausea meds, some people do fine with just the Emend each morning for 2-3 days and others need more on top of the Emend. A lot of drugs are like that actually, for example psychiatric meds. For whatever reason, different ones work better for different people so that is why there are so many different anti-depressants, anti-psychotics, mood stabilizers, etc.
Rachel I'm glad to hear your scan was clear and also glad the Emend worked well for you!
KatherineNaomi I have not signed up for Chemo Angels but my sister-in-law is an angel for them and she says it is a great organization so I would also recommend it to anyone who is interested.
I think someone mentioned trouble with sleeping but now I don't see that post. Anyway, I have been having major sleep problems since getting the chemo started and what seems to have finally worked for me is Ambien CR. The CR means it is controlled release so that in addition to helping you fall asleep it helps you stay asleep. With regular Ambien I was waking up after 4 or 5 hours and being unable to get back to sleep. This keeps me asleep for the whole night. I feel SO MUCH better now I've gotten a good couple of nights sleep! I also finally got my appetite back so I'm pretty much feeling back to normal now, a week after my first chemo.
And birthdays! I am a huge fan of birthdays and it sounds like we have quite a few fall birthdays in this group. Mine is in October, so I'll also be doing chemo right around my birthday. But LadyinBama is right, the American Cancer Society is using the tagline "sponsor of more birthdays" and we are all doing something to help give ourselves more birthdays!
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Hi, I just found this thread here called 'You know your a cancer patient when....' and its pretty funny!0
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I have been busy reading, "You know you are a cancer patient when...." Laughed out loud, love it, love it!
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Good morning all (and good afternoon to those across the pond - are they still with us???)
Calamty; Yes, I still get queasy on and off (am on Day 13). I tend to get more nauseous in the evenings. Sometimes, though, I'll go for a day or two with no nausea at all, and then the next day WHAMMO! I still try to avoid taking meds for it though because I have had such a huge problem with constipation.
youngmom: I really applaud you for making the decision of discontinue chemo. Most of us are doing it because we feel it is the best (or only) choice we have to beat the cancer, but your circumstances are different. It has probably not been an easy decision to make. It's so easy to get stuck in the one-way rut of thinking "I have to do chemo. I have no choice." But you sat down and thoughtfully looked at your overall experience and options and allowed yourself to make a different choice. So good for you. Al the same, I will be interested to know how your onc responds.
Rachel: Great news on the bone scan! I'm so happy for you.
Lizzy: I've actually been a little wary of your moniker, fearless leader. You may be the glue that holds this group together, but that doesn't mean that you don't need to come unglued from time to time. You are optimistic in the face of your CA; you focus on positive thinking; you have realized how good it is for you (as it is for anyone) to be supportive and encouraging to others. But fearless? Maybe that's setting the bar a little high at the cost of exploring your own emotional turmoil and allowing yourself to be cared for, which you need every bit as much as the rest of us. I get the strong impression that it is not easy for you to open up and let others in when it comes to your own vulnerabilities (I'm am quite intimately familiar with this issue myself), so I nominate YOU for the next cape, not just for having to deal with all these stalls and waits, and worries over your scans, but also for allowing yourself to shed the fearless leader personae and share with us the painful, rightening parts of your situation as well.
A few things on me... I went running this morning, but could go only about a mile before I was sidelined by these darn muscle spasms in my back. My onc said they are caused by the taxotere, but I keep expecting them to get better as the days go by. But this time, they're not going away. The feel like knife blades. Is anyone else having this? And I was also wondering if anyone knows about any particular vitamin deficiency which could be causing or exasperating them too? Thanks. I'd appreciate any wisdom that comes my way.
I keep meaning to make these book recommendations to you all. Both by the same author, both uplifting in an "I'm gonna kick cancer's butt" kind of way, funny, and compelling. The earlier one (and the one I liked better out of the two) is Crazy Sexy Cancer Tips, and the second is Crazy Sexy Cancer Survivor. The author is Kris Carr. I highly recommend taking a look at either/both of these books.
Hope everyone is enjoying their weekends. We have suddenly received some rather chilly weather in the Chicagoland area. I love fall, so I'm enjoying this immensely, and even noticing the first few leaves falling from the trees. We live on a moderately long, not country road, but not well-developed either, which is lined with huge maple trees, and I can scarcely think of anything more beautiful than our street and our yard in the fall.
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Today is my birthday on chemo! Yup, fun, fun.
But I feel good, I still have hair (cut it short and am waiting off on the buzzing until need be) and hope to have many more ahead. Hope all of you are enjoying the holdiay weekend!
Liz
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Happy Birthday Zachsmom!0
http://www.youtube.com/dailymotivation#p/u/3/H8ZuKF3dxCY