May 2010 Chemo
Comments
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Sacphotomom ~ Sorry to hear about your long night. Those nights can seem to go on forever. I'm at the height of my Neulasta pain as well- hate it! I take oxycodone for mine. Just talked to onc. and he said not to worry unless it hits 101.5. Just take tylenol or aleve. I just don't like when I don't know what my body's doing.
Patricia ~ enjoy the good days!
Day ~ will look into tumor info - so interesting! Do you wait a specific while to get together with people? I haven't been nearly that careful. Re: allergies - I swear by irrigating my nose! A full cup of salty water morning and night - it really helps! Re: hot flashes, does your head get hot? I feel like I have heat coming out of mine sometime, or like I have a heated pillow. Crazy stuff!
Leanna ~ you're probably watching your son squeal with glee riding his big bike today. I remember those day and cherish them. Emboss them in your memory cuz they're so special. Is it normal to have to go for Muga or Echo's again? My onc. doesn't seem concerned about ankles, fatigues, breathlessness. It always comes back to the chemo drugs - it's all their fault. Good luck dodging the chemo pellets today, girl! Any good tips? What do you do with yourself when you feel so crappy? I don't even have it in me to watch movies.
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x-raygirl,
Yes, I wait at least 10 days (safer 14 but depends on my cbc count on the 10 day, they give it to me in about 5 minutes) before going around anywhere - be it plain shopping or having people over visiting. My onc and chemo nurses told me the cbc count "bottoms out" on the 7th day after the treatment, so I make sure in the first week I am "in solitude" lol. My boyfriend has a box of wipes in the truck he wipes his shoes before coming in the house, he gets straight in the shower, changes and then we can hug. He doesn't want to be bringing home to me anything that might harm me.Maybe we are a little over-cautious, but so far it worked real good.
Yes, that is exactly - my head is the hottest, and it gets VERY sweaty.I also noticed that it is enough for me to get away from a/c environment, in a temperature above 82 for a hot flash to come. As a norm, they happen around 10 times a day, and last 2-3 minutes. If I get right in front of the a/c, they go away instantly. I didnt; find any connection with food or anything.
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I am on DD Taxol and I think the SE's are a little different than those on weekly but I have to report that I was in terrible pain over the weekend (Day 3 & 4). My bones and joints are killing me! I feel like an 80 year old woman with severe arthritis. I told my DH it feels like a game of Whack-A-Mole, the pain "jumps" all over my body. My back, shins and ankles are the worst and it's keeping me up all night. I'm going to call onc today and see if I can get pain meds bc tylenol & advil are not helping. OK, done complaining...
Day, thanks for the info on KI-67 - mine was 90%!!!!!!!!!
Patricia - I ordered The Cancer Fighting Cookbook, I should get it tomorrow. I can't wait, cooking is one of my favorite things to do. I haven't done too much lately, just can't get into it, but maybe the book will provide some inspiration. Also, I'm so glad you didn't ahve a reaction to the Taxol treatment. LibraryJenn - sounds like you had a great weekend with your husband. We all need to remember to take the extra time for the "important things". Fotopet - good luck with treatment tomorrow! X-raygirl - Glad your kankles are getting better, is your fever down? JennyB - Sorry about more steroids, hate them!! Hopefully the get this figured out soon. "NORMAL" sounds good! Leanna - Who doesn't love Big Wheels?! Glad you had a nice day.
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Summer ~ Tylenol does nothing for those pains you're describing. I took oxycodone for them this weekend - and I know what you mean about them jumping around, etc. Cancer Fighting Kitchen is one of my favorite books out there - loaded with info! Re: Ki-67 ~ that info wasn't on my path report, was it on yours?
My fever went up to 100.5 last night. I ended up sweating it out and hopefully it's gone. Now I'm trying to decide if I should try to work this week - am scheduled for Tues. and Wed. I work in a medical clinic and am thinking maybe I should call in sick. Zero energy, plus, Day, your comments about being cautious around people made me think maybe I should be more careful.
Off to drink some dandelion tea :-) Have a good day everyone!
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X-raygirl - The Ki-67 was on my biopsy pathology report, same area as my ER/PR info.
Please be careful with that fever!!!
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Hello May chemo sisters! I just finished catching up with everyone. It's odd ~ after a few days of not checking in, I feel like I need a fix! No matter how supportive & understanding my family and friends are, they're not walking in the same shoes.
Paxton: I'm glad that you're getting some help. I think a lot of us have trouble asking for help, especially when we're the ones on the giving end, but we need to do so. I've struggled with this, & I don't have young children to care for. Barb: I guess by now you're on that much-needed vacation. Hope you have a great time!
Day: I was sorry to read about your family cancer hx. When I talked with my surgeon about taking the "healthy breast", she said "I don't have to live in your skin. If you need to do this to improve your quality of life & not wake up every day worrying about what will happen next, I'll support your decision." I think its great advice.
Leanna: What a relief on your MRI results, & sounds like the b-day party was great fun for everyone! When do you have your surgery, & what are you having? My pre-surgery biopsies all showed IDC and DCIS (plus it was into the lymph nodes & the main mass was 10 cm), but post-surgery path report also confirmed LCIS. So I was really glad I made the decision to have the bi-lateral.
Drim: Hope you get that darn insurance issue resolved. This fight is hard enough without having to deal with bureaucratic bullsh*t. Daiva: Sounds like you and your daughter had a great NY trip. Hope by now the fever is gone & you're feeling better. JennyB: Sorry to hear about the chest pain ~ hopefully, it will be gone soon & you can enjoy being done. GolferGirl: Congrats on getting your port out - must be a relief! Fotopet: By now, you had your last tx. I know you were dreading it, but I'm betting it wasn't nearly as bad as you expected. LibraryJenn: What a great get-away! I'm sure your husband needed it as much as you did. This is really tough on them. njbhwgirl: Thanks for the invite ~ what a great way to meet up & celebrate life & strong women!
BTW: Is everyone here moving on to radiation after finishing chemo? If not, what's next?
Sacphotomom: Sorry to hear about your night ~ hope you get past this soon. YAY for no stomach/gut issues. So far after my first Taxol tx, I've not had any of those issues either. My onc is keeping me on the Neulasta until I finish my 3rd tx ~ don't need it after the last one. Probably just as well - my counts have been good all along.
Summer: How scary for you ~ any sense from your onc about how to avoid it next time? Patricia: My Taxol treatments are every other week, so I'll have more recovery time in between txs. I got the Decadron via IV first, then Benadryl, then the Taxol. For me, the "Uncle Ben" ~ as the onc nurse called it ~ was the worst part of the infusion. During the last 5 minutes, it burned like hell (even though she put a hot pack over the infusion site which is supposed to help cool it down! HUH?!!). Achy feeling seems to be a common SE ~ my onc & the onc nurses all said expect joint/bone pain. I also have not had any of the AC gastro issues & I'm keeping my fingers crossed that it continues!
I seem to have developed neuropathy in my fingers ~ feels like I burned them on a hot stove (plus swelling). I've started doing some research on this - one study suggests taking L Carnitine. I also thought I'd read ~ maybe here ~ about gloves? If anyone knows about that, I'd appreciate the info, & I'll post whatever I can find out.
Hi to everyone else in the May chemo group. I hope you all are doing ok!
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Hey Everyone. I am on day 4 of the weekly Taxol and the pain is like someone beat me with a stick all over my body. My onc said use the 8-12 hr Aleve. I am doing that and have not used my stronger stuff. I hate the way it makes me feel. I am trying to take my mind off the pain by sewing for my grandaughter. I gave up sewing years ago, but hey, it is cute to make little sunsuits, etc. She is 8 mo old now. I love to cook, so I have been watching the Julia Child French Chef on DVD. When I get too sore to sew, I lie down and watch an episode of Julia. I love French cooking and love spending time in France. I miss traveling this year.
Summer, hope you like the the Cancer Fighting Kitchen. It does have great information, in addition to healthy recipes. I am making the avacado/cucumber soup todav. It is one of my favorites, because I love avocados and it is so cool for summer. X-ray Girl Regarding being cautions around people, I have stayed at home during my low blood count days the entire time and I have not had any illness. I also ask people who are coming over if they have any symptoms at all, and wear my mask around people (repairmen, etc.) that I do not know. I just know I can not handle any other illness in addition to treatment. So please consider skipping work this week. I do not know how to count the days now, since I am on weekly Taxol, but I know there is still a dip in wbc. My onc says it is still 10-14 days after, so there will two cycles going on at the same time, which will be confusing. I can tell by the shortness of breath and fatigue. I think I will be just continue to be careful all the time.. Is anyone else having their steroid decreased with each weekly infusion of Taxol? I am nervous about this. I will be off the steroid(which is good, as long as there is no reaction) by week 4. The nurse at the chemo lounge seemed skeptical about this, but I do trust my onc. Hope we all are having better days soon.
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Irishtess - The nurses didn't give me any ideas to avoid a reaction next time they just said that just bc I reacted once didn't mean I would every time. OMG, totally agree on the benadry drip - holy cow it burned!!! The nurse put a hot pack on it but that didn't help so she let the saline drip at the same time and that helped a lot.
Patricia - yummmmmmm! I love avacados too, can't wait to try it.
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Sacphotomom: I had a reaction to the taxotere the time they tried to send it in "regular" -- clear squiggly lines, flushed face, sick to my stomach and severe pain up and down my back -- they stopped it IMMEDIATELY -- flushed me and gave me benadryl for 45 min. before restarting it. So the image is just DO IT VERY SLOWLY and my body did okay. I didn't lose my eye lashes or eyebrows. It does make you very fatigued! I have my last treatment July 29 and then 3 weeks later will start radiation. Packjen: Your pictures/party was AWESOME! WONDERFUL LOVE! njbhwgirl: God bless your son for his service -- he sounds like an amazing young man and I know your heart is happy and sad as I have a son (30 yrs old) and can't imagine all the emotions you are having! Day: You and I are finishing up about the same! I am so READY to be beyond CHEMO --
Your knowledge of herbs and so forth is amazing and cool! The nurse at my oncologist office made sure to let me know initially to NOT do anything "natural" during chemo. So I don't know -- I've followed their lead -- BUT after I get past this junk -- I intend to do better with naturals going into my body. I saw on the news last night were some transient field workers weren't able to get work pulling weeds because farmers are using some type of weed control within the machines as they work their crop. SO, I am thinking -- heck, how can any of us be safe with what is used on crops. If it kills the weeds BY the crop -- how does it not leak into the soil where the crop is taking in nutrients.
I pray we all stay on a positive journey here. I've been lazy on being on the board but my last (3rd) chemo seemed to make me tired for more days than normal. Dr. said it is a cumulative effect. Much love to you all who have finished and can move to a better place in life's journey. Do any of you still go "LIKE did I have Cancer? Is it like that word that means my life was in danger?" I don't know it just still seems surreal -- maybe chemo is warping my brain more.
Oh I have a funny for you all -- yesterday it got dark here in Georgia (I live near Athens) and then just rained. I was doing laundry and looked out and said -- why not!??-- So I stripped off my clothes -- set a beach towel by the door and went and danced NEKID on our back deck. (We have woods all around so I was not being an exhibitionist!) My husband thought I was wacko! It is the advantage of being bald and not worrying about messing up any hair style. FUNNY!
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LOL Kim, good for you!!!!!!!
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Awesome story Kim! I can't stop smiling picturing a naked rain dance. I miss living where I could do that too
Here is another funny for everyone: yesterday my son Connor (who is 2) fell off of the couch on his bum, looked at his dad and said, "I hurt my bum. Daddy, kiss is better." My husband and I were laughing so hard that I'm sure Connor thought we were crazy!
I'm heading to an appointment with the onc. today. Not my regular one, as he is on holidays for the entire month of July. I hope to hear good news, like maybe the tumor has shrunk from last time!
On the subject of going out, I'm not nearly as careful as some of you. I go out all the time, but do try and use hand sanitizer often and wash my hands before I touch any part of my face. I'm not the type that can stay in the house for too long, and as soon as day 8 hits and I start feeling better, I'm out and about. Even if it's just a walk to the grocery store (we take the wagon so I don't touch dirty carts) or a visit with friends, I just can't be on the couch any more than I have to!
Have a great week ladies
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Getting ready for my last tx tomorrow. I am both looking forawrd to getting it done and dreading the SE's because last time was really bad and lasted longer than any other.
Adding to the "going out" discussion - I am really not very careful at all. Since I have to work, I have to go interact with people anyway. But the Neulasta has been keeping my white count nice and high, so I am not particularly worried (knock on wood)
Day - Thanks for the info on the KI-67. I remember seeing something like that early on, but now I'll have to look into it more.
A general Hi" to everyone. I am trying to slam out some work and might not be able to get back on for a bit. Hope you all are riding out the chemo-storm!
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Kim ~ YOU GO GIRL! Thanks for the smile :-)
Fotopet ~ good luck tomorrow. Hurray - last one!
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The "no natural remedies" talk, they tried to give it to me too as the chemo center, with the same explanation, that it boosts the immune system. I took a puzzled expression and asked "and exactly what has chemotherapy to do with the immune system? " I got a black expression and a "mmm... aaaa... mmmm" and I continued "Besides lowering it to dangerous levels, and that is why we are prescribed Neulasta? Let me get this straight, you are a chemotherapy nurse and do not know how chemotherapy works on the cancer cells and on the body? I think I will talk to the Dr. about your qualifications working here and giving false information to the patients". The oncologist backed me up 100%.
The doctors are SUPPOSED to help maintaining your immune system working during chemotherapy - be it by conventional medicine (which besides Neulasta and vitamins, doesn't have much to give) or by alternative therapies. This should be one of the MAJOR questions one should ask their oncologist before starting chemo - "how will my immune system be supported during this?". Do not forget that your immune system is the PRIMARY weapon your body has to fight cancer - it failed before, you do not want it to fail again. If our immune systems were to an optimum level the cancers wouldn't be able to grow. But because of our diets, environment and life-styles, our immune systems take dips and that is when the beasts starts growing. It is a known (even if shushed about) fact that EVERYBODY has cancer cells in their body at any given time (think of the billions of cells that divide and multiply in your body during a life-time, and what is the % probability of mutations), but the immune system takes care of that.
Here's what the specialists explain:
http://www.cancer.gov/cancertopics/understandingcancer/immunesystem
Honestly, I am amazed that in all these "traditional" aggressive therapies, none deals directly with boosting the immune system. Unbelievable.
Ok, now I can get down from my soap-box lol.
So, I am doing pretty well, still getting tired easily. I started having some pains in my right wrist in the last few days - I'll chalk it up to neuropathy and be patient until my PET scan after chemo, as I am thinking any of these little aches and pains can be chemo-related, and will really start whining about them after the chemo is done.
x-raygirl, great to know your fever went away! Kim, I know! Can't wait myself! I LOVED the dancing in the rain thing, I do that at night only (I DO have neighbors lol) fotopet - good luck tomorrow! Yoo-hoo, you're done! LibraryJenn - I hope you get good news! Leanna - how in the world did I forget about celery? I go through at least 2 packages a week, just wash them, and chop them finely and keep a bowl of them near me almost at all times (I like them better chopped, no tough "threads" and juicier ). I have celery CRAVINGS if you can imagine that! Paxton, I hope things get better, I really do! it must be awful for you. Redbarb, I hope you are having the time of your life. Irishtess, I wouldn't have problems baring my fuzzy head in public, but I avoid that for two reasons: afraid of sunburn and I am sure all the mosquitoes in the neighborhood would come for my head! Summer - your Taxol reaction seemed pretty much like my Taxotere reactions (twice!). The third tx, they just started very slow, and upped it gradually when they made sure nothing was going on. It worked like a charm! they also gave me more steroids than normal after the first tim. Patricia - I hear you. I had pain from the chemo even before Neulasta, and after that only Percocet helped me.
My hair is DEFINITELY coming back. I mean, besides the armpits, legs and the argh!!!! moustache, there is definite growth on my head - a little weird though, I have about three kinds of hairs - my regular hair (that seems to be the ones that never fell) same color as before, same silkiness, then pure white hairs that seem to be flattened to the skull (no, they are not fuzzy) and another type of hair that looks to be the same color as my "normal" one but has a different texture. I hope it will all stand the last tx and not fall again. Eyebrows look the same, didn't thin out more, neither did the eyelashes. "nether parts" no new growth.
It's very hot here, but it looks beautiful. Right in front of the window of the room I am in, there is a dwarf myrtle full of blooms and with more on the way, and a delicate mimosa tree in bloom.
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KIm lovs Thank you so much for the dance ...I have laughed so hard thinking about it...Now I'm wishing for rain here....that would feel so good!
Celery ...I have been living off celery for quit a while now..with peanut butter and plain ...its so juicy...
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With every on getting done with their treatments I feel like I'm the only one that will be left! Still have 3 more every three weeks of Taxotere...oopps just a oh poor me moment! Least I can count on all off you to let me in o the radiation SEs
I have discovered that Norco makes me emotional.... still getting horrible back pain this evening geeezes!!!
cant sit.... cant stand...lying down doesn't help either...tonight will be a sleeping pill night!
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Don't worry, we won't leave you alone! Think of this: we'll still have SE's even after the last tx, so we'll still be around moping and whining!
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Day - Ok, thanks. I think I found mine, but its on my HER2 FISH pathology, and stated as 22%. Does that sound right? So, is that medium? What's it mean? You are not being over-cautious with germs! My DH calls me a 'germ-a-phobe,' well, honestly, he did before all this happened, and it's worse now. Oh! I get celery cravings too! It's a staple in our house.
Drim - Most people do not get it... you have to be a little older, and a baseball fan! I love their names!!
Patricia - Congrats on getting your first taxol done! The weekly schedule really flies by quickly... by now, I feel like I'm in the movie Groundhog Day... again, again.. every week the same SE!!! Blah!! But, not too bad.
Daiva - I hope your fever is nothing. What did your onc say? Sorry DH is out of town, and your son is not getting as much attention. I am truly with you in that guilt. (((HUGS))) At the height of my crappiness... usually take a kytril (sp?), oxycodone, ativan and try and take a nap if DH is home. Some days its just really hard. I can't concentrate no movies or anything when I feel that bad either. I think they usually do the Echos every 3 months, or maybe between treatments.? I guess everyone is different - you should have one when this chemo is finished, but if you symptoms persisted, I might insist/suggest... I know my onc is usually amenable to doing whatever helps ease my mind! And, yes, Nolan loves his "motorcycle!!" I love that he calls it a motorcycle!! Haha. And, Daiva, yes, you need to be very careful on your nadir days... the days your counts are most likely to tank... it is safer to not work or be around people on those days... cook food completely... do not eat fresh fruit... do not be around fresh flowers.
Sacphotomom - YAY for no nausea... boo for bad pain! And.... I'll be here! I have 2 more weeks of taxol and then start AC!!!!!
Summer - I got bone pain only one week so far from the taxol and it was in my hips... and it was 'stop everything' pain... no sleep, no rest, awful... awful! You need something stronger if that's what you are feeling! I took oxycodone and ativan (I know ativan is not for pain, but helps you relax!!).
Tess - I will have a right mast with AND, and TE placement. Originally, I was going to have a bilateral... especially as the news of the cancer kept getting worse and worse... you know the story... first call... IDC... then more tests and it's a big tumor, plus lymph nodes... by my BRCA tests were negative, and I think my Ki67 is not terribly high (I don't know, I just figured it out today). I think probably if pathology shows any lobular, I will probably have the other side taken later too. My reason for the single mast now, is to not run into any more problems than necessary to get rid of the cancer now. I'll be really curious to see post-surgery pathology! Sorry about the neuropathy; mine was 'light' and fleeting.
Patricia - the Taxol made me feel very 'hang-overish' on my bad days... just tired, tired, tired of feeling crappy, and having crappy butt! (chemo pellets....) Lots of water... get it out!!!! I don't know about the steroids... I remained on them the entire time despite no reactions. ? Curious.. keep us posted!!
Kim - That's awesome!!!! My husband asked me about the weather the other day, and I said, I don't know... the only reason I ever checked the weather was to see whether or not to wear my hair down... I wouldn't if it was going to rain (because rain comes with humidity and the frizzes)... and now, well... duh, it doesn't matter. I love the freedom of no hair! I bet it felt great to dance in the rain!
Jenn- Funny! Daddy, kiss my bum!! I hope you get great news from the onc. How does it feel to you; any smaller?
Fotopet - YES on the last treatment tomorrow!!!!!!!!!!!!!
And, what is Norco??
More fun tomorrow! Get to go buy a new calendar for the fridge to put all the school stuff on it... do I need to do it now? No, but I need to do something!! The house is getting so incredibly organized little by little! And, I finally got all the pictures up on the upstairs hallway! We painted more than a year ago and the frames have been sitting around... finally did it and it looks great!! Pat pat!!
Wish I could get outside and work on the landscaping... boo. ((HUGS)) everyone!!
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We managed to enjoy a little family time at the beach yesterday. But I've been sick as a dog all day today; spent most of the day in bed or in the chair. I know the baby was a handful for bf, but I did manage to not sit around crying feeling guilty so steps in the right direction.
Now onto another tx tomorrow. The taxol neuropathy is starting to bother me so might be time to discuss other options with onc. The acetyl carnitine supplement seemed to really help for quite awhile. I've had taxol in the past with neuropathy issues so am pleased I was able to still have tx's without significant probs until now. But there's a point where it doesn't seem worth continuing on with it.
Best of luck to those with bone pain from DD taxol.
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Sacphotomom ~ don't worry, I'll still be around as well. I have 2 more to go and my last one isn't til the end of Aug. Celery sounds good right now - I'm going to go wash some when I get off the computer.
Leanna~ no fresh fruit on nadir days? What about juicing? I seem to remember reading that only cooked foods are recommended on those days - but what about the benefits of fresh juice made at home? I think Ativan is a good idea - I might look into it - esp. for the days I'm so sore I can't relax and settle down.
Paxton ~ glad you got to the beach. Sorry to hear about your neuropathy. I heard L-Glutamine can help - someone gave me a bottle but I've only taken it once or twice. Sending big hugs your way - can't imagine having a baby right now!
Day ~ you crack me up! I loved your last post! I bet you give the staff at your onc's office a run for their money. Re: the hair - got to keep a sense of humor about it :-)
Gotta run - stay cool, dear friends. Our bodies are working so hard on our behalf, lets be kind to them today!
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Hi girls,
just catching up on all your posts. RE: Taxotere reactions - my last chemo I had no extra premeds, the nurse started it slowly and increased in increments and I did not react. Shows that the key with taxotere seems to be to begin SLOWLY! Wish I had of known it earlier may have avoided a reaction or two!
Keep strong!
Mel
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It's a beautiful day out! I am going to cut out of work at noon and meet some friends at the local wineries for the afternoon - I'll raise my glass to each of you!
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Ok ladies, just came back from my visit with the BS today. It seems that I had misunderstood him - he didn't intend to do a full axillary lymph node dissection, he only wants to take a few more nodes out - he only took one on the SNB because my initial diagnosis was pure DCIS, but now with the more invasive ones he just wants to make sure there is no more involvement. He said 4-5 nodes at max. I will have the surgery at the same time as my first revision on the reconstruction, and that will be on the 20th of August.
A very important thing that he told me. Now, keep in mind my BS is (and I love him to death) one of the top BS surgeons in the country - he used to be the director of the breast center at John Hopkins, and now he is the director of surgical oncology at the OU. His name is William Dooley. He is friends with the Dr. from John Hopkins who is undergoing the study for the DIM (Di-Indoly Methane), the new promising drug that might replace Tamoxifen and the AI's, that has no side effects - youcan read about it here:
http://www.naturodoc.com/library/hormones/diindolymethane.htm
He said that in the last discussions he had with his friend, even the famous ActivaMune (you can read about it here) only has half of the active ingredient - it seems that through processing, the active ingredient gets lost. He said "eat two tea-spoons of fresh broccoli sprouts a day. It's not hard to grow them, you only need a tray, a sponge and a sun-lit window". He also totally supported my decision to have an oophorectomy so I can go on AI's instead of Tamoxifen considering the risks and my family history concerning thrombophlebitis, uterine cancer and colon cancer.
So yes, I was so happy I was going to leave the consultation room still wearing the consultation gown! His assistant pulled me in and she was cracking up and said (between fits of laughter) "you might want to put your blouse on". I also visited a little bit with his assistant and his nurse (they are the best, I hope for the next appointment - which is on the 12th of August - I'll be good enough to bake some cookies for them).
Sooo... I'm pretty happy right now. And a little tired, I woke up early (5-ish) as my boyfriend had to leave for work by 5:30 and then I couldn't sleep. I invited the friend who gave me a drive for a home-cooked brunch - he is an elderly bachelor, so not a lot of home-cooking for him - so right now I think I will go take a nap. Then do my nettlestea and then do some research for making me a little portable greenhouse for growing broccoli sprouts.
Hugs all
Day
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Norco is Hydrocodone pain pills ..
My Taxotere drip will be 2 and 1/2 hours yea I mentioned all the reactions that I have heard of and said please start very slow and then we can figure it out..they ( the nurses) were very accommodating...
I didn't hear about no fresh fruit..wow I eat it all the time .quess I have been playing chicken...and fresh flowers I bring them in from my garden all about once a week.....I do stay close to home on my Nader days.
last night I had to call the doc on call because of spine pain... the Norco just barely took care of it..I was going nuts....he told me to take 2 norco and then take some Advil ...yea then call my Onc in the morning...I was very upset thinking I was going to the hospital because nothing was working ..then I fell asleep my DH woke me up at 3 to take more norco..this morning I'm still under that dose and about to take one more ..not taking any chances with Advil only....the other doc said to make sure that I don't get nuelasta next time....I'll talk to my Onc about that.....well see tomorrow where my WBC is..
I have been having some really emotional days ...but thanks for making me feel like I won't be left alone...
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Sacphotomom I am sorry you are in so much pain. I eat fresh fruit too,(on nader days) but I use a cleaner from the health food store. I have three more months of chemo, then radiation, so I will be here for a long time. I am not getting neulasta with my weekly taxol. My onc feels I won't need it. We will see. I am so sore today my arms and hands feel weak, yet if feels to better for me to keep moving. I am going to drive about 20 minutes to a private yoga session(my teacher is in Turkey now, so I am going to her teacher). I hope I am able to do something when I get there. A nice story is that the couple I buy fresh produce from made a special batch of applesauce for me yesterday with no sugar, just some organic maple syrup. He had testicular cancer 20 years ago and gave up sugar. I was very touched that they supported my efforts in this way. I am using agave nectar, organic maple syrup and some honey. The first two are recommended in the Cancer Fighting Kitchen. I use local honey in my herbal tea,but not on nader days.
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DancerMel~ hurray for no reactions!
Summer ~ have some good wine? we girls need our antioxidants! Sounds like a fun afternoon:-)
Day ~ can't wait to read up on DIM info - have to wait til I feel I can absorb something! Speaking of broccoli sprouts, I just bought some Brassica tea - you may want to check it out. I'm so curious what you do for a living - you're so good at researching and being educated on what you're going through. Kudos to you!!!! I bet you'd make a good lawyer.
Sacphotomom ~ I'm with you on the flowers - they cheer the place up! Was your spine pain from Neulasta? I hope it's better today - relief WILL come! hoping it's soon!!!
Patricia ~ thanks for the reminder - I have a yoga DVD for cancer patients that someone lent me - I might actually be up for trying it today. Enjoy the applesauce - people can be so kind!
This is the first day since my tx on Thurs. that I have been able to get out of the house. Luke, my 9 yr. old and I juiced some veggies this morning - he was "into it" today. We made a trip to Costco and then I went to the coffee shop that sells Brassica tea. It's got broccoli extract in it - I thought it might help in supporting my immune system. Wow, after a few really bad days, I really appreciate a decent one! I ran into a woman at Costco who is a 2 yr. survivor - it picked up my spirits even more after talking with her. She looked vibrant and healthy. Right now, it just seems so long away. So I have a question: not to be morose, but do you guys think about your mortality? Maybe this is not the place to discuss this and it's ok if it's dropped like a hot potatoe. I just am finding myself wondering if I will be one of the ones who "makes it". Thoughts are swirling in my head - not in a depressed sense, but in a sobering way. I try to envision myself as thriving and healthy, but not everyone survives this nasty disease. I know it's a process and no one can answer these questions for me - I just can't ignore them. As far as today goes, I choose to be present to whomever I'm with. I look forward to hearing about Emma, my 18 yr. old's, trip for college orientation. I choose to be grateful for the blessings in my life - both big and small. This group is among my blessings - thanks for being there!
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Hi Ladies! I have been off-line for a couple of weeks and finally had time today to catch up on everything. I completed my 2nd Taxol on Thursday and like Summer, Patricia48 and Leanna9 have had really bad bone/joint pain. My first tx the pain was much worse than this tx and I really had a harder time sleeping because I couldn't get comfortable. The bone pain from this tx it seems to be lasting longer. I have been taking pain pills at night along with Ambien and Advil during the day. Sometimes this works to help lessen the discomfort and other times nothing seems to help. It does work better if I don't let the pain get out of control. I just keep thinking I only have 2 tx left and I will be done with chemo! I am waiting on an appointment at Sloane with the Radiology department to see if I need to have radiation. I am hoping I don't, I am ready to be done with these treatments.
Sacphotomom - I am sorry you had such a bad reaction. I hope the next tx is better, maybe they will start if off slower the next time and you will be fine. I hope your bone pain is better soon!
Day - My KI-67 was a 19 - which is very low end of intermediate per my docs. I was glad it was that low, but seems to put me the in grey area for whether I will need radiation or not.
I don't remember who asked about mouth sores on Taxol, but I had them during AC and they have been soo much better while on Taxol. I have not really had stomach discomfort with Taxol either, just the bone pain.
Packjen - I love your chemo party stories, they are the best! I am glad you are having such a good time while you are there, I am sure it is making the time go faster.
Question: I am hearing lots on these posts about drinking and I was wondering if any of your doctors gave you instructions about drinking while on Chemo? Mine told me not to drink at all the first week after chemo and only occasionally after that.
Have a great night!
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Drinking question....I was told to go a head and have a drink but not the day before or the 4 days after..but don't go crazy...for me just the thought of having the day after drinking headache is bad...but for some reason I love the taste of beer...I have never liked it , never drank it...never like the smell of it...but it sure tastes good now that my taste buds are shot..
Still having the spine pain and still waiting for a call back form the ONC ...I'm beginning to think the Norco isn't working on this type of pain.... I'm giving the ONC another 1/2 hour to call me, then I m calling back ..I'm having a hard time ...I keep crying at the drop of the hat or should I say every time the air conditioner comes on...
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x-raygirl, thank you, I will look for the Brassica tea. I am not sure if it is of any use though, as I understand that the DIM is destroyed by heating - that is why the extract is so less potent than the sprouts themselves. Even the companies that are producing the broccoli sprouts warn about them not being left out of the fridge as the DIM gets lost. You can get DIM also in yoru diet by eating raw broccoli, cauliflower and cabbage - not as much as from the sprouts though.
Right now I don't work - I am still making a little bit of money from web development and web design (when my chemo brain allows me to) and making OOAK sculptures (look in the "depression and anxiety forum for the thread "Creative Cottage") and jewelry. I also own a few websites (including a dating one, lol). Hey, maybe I should make a website for cancer survivors? Just joking here.
Laura, my Ki-67 was 18 on the IDC and 15 on the ILC (or maybe it was vice-versa?), anyway, they told me the 18 one was at the upper end of "low". Anyway, this, the fact that all the tumors I had were Grade 2 and the fact that I had no vascular invasion, even if I had the sentinel node positive, give me a fairly good prognosis in terms of survival and recurrence.
Sacphotomom, I hope your pain is better. I usually have to take the Percocet (hydrocodone) only for about 5 days after the Neulasta shot. Oxycodone (generic for Norco or Lortab) doesnt' help me with pain at all - it only makes me dizzy, dries my mouth, and gives me insomnia - the pain is still there in full force. Percocet though works like a charm - and unbelievable, but it helps me sleep. The pain from the tx itself (the first one, when I didn't get Neulasta) was pretty intense too, but Tylenol was pretty much able to take care of it, I only needed to take Percocet one time.
Oh, and Laura - I didn't ask about drinking. As for the week after the tx - I have strong doubts I could drink, as I feel so bad. It would probably make me sick. I do have a beer or two in the 3rd week after the tx, but not two days before the next tx. I intend to get me a bottle of wine and start the 1/2 glass of wine a day thing once the chemo is over.
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Hi Ladies! I had a very pointless, very time consuming appointment with an oncologist yesterday. My mom and waited for almost an hour before I left the room, and stood outside of it until someone asked me what I was doing. The doctor didn't know if we were the people he was supposed to see, so he just left us instead of asking. ARGH! Needless to say, we weren't impressed. He didn't have anything useful to say other than I shouldn't be worried that my tumor hasn't really shrunk. Still around 8x8cm. He said that I've only done 2 of 8 rounds of chemo...which I then reminded him I've done 3 of 8 and will be doing the 4th on Friday. What a waste of time. If anything it made me appreciate my regular oncologist who is on holidays for the month of July. English may not be his first language, and he sometimes has a hard time answering my questions, but I never felt like he was brushing off any of my concerns.
In good news though, I picked up Cancer Fighting Kitchen yesterday while in the city and spent another $100.00 at the health food store this morning on all of the spices I didn't have, and other stuff like agave nectar and maple syrup. I have a question for those of you who have had the book for a while - what are your favourite recipes out of it? Some of the ingredients are going to be tricky for me to track down. I might have to see if there are any places online that ship to Canada.
sacphotomom - I hope you get relief soon from the pain. That stinks.
x-ray girl - yes I think about "it." I think I have to to remain sane. I think it's good to recognize things that scare us. I wrote my top ten fears down in a journal. It just helped me to feel like fear is a normal part of what we are going through, but that it doesn't control me or define me. I agree with you that we have to be present though. It would drive me crazy to think about the future all of the time, especially if I think that if something did happen to me, my son would likely not remember me. That burns my heart a lot. I agree with you that this group is a blessing though. I don't know how many conversations I have with my family that starts with "Someone in this group I'm in online said..." lol
Laura - yes, I was told not to drink at first, but when I asked why, no one could really answer me. My drug information sheets for AC all said that alcohol does not affect the effectiveness of the drug in small amounts. One pharmacist said that if anything I'd just be a cheap drunk. I have yet to drink that much! I also take dexamethasone (sp?) for the first week which shouldn't be mixed with alcohol, so I don't drink during the first week at all. To be honest, I don't feel good enough to anyway. I also don't drink coffee during the first week as it tastes awful.
Sorry for the novel guys. I'm just as chatty in real life!
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