Taxotere, Carboplatin and Herceptin
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Is anyone else taking Nuepogen for their white blood counts? i am with an HMO that does not offer Nuelasta. My new doc that i am switching to after 7/1 said the Nuepogen is very 1990's. I will be getting the Neulasta for chemo 3 in July, but it sounds kind of scary. I have to say, I will much prefer having THEM give me the shot. Having to give myself these shots was a giant lesson in courage (i guess I am really a big baby). Today, summer solstice is my anniversary. My husband is calling it our cancerversary.
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I am confused as to why a lot of you are getting Neulasta or similar shots? My oncologist expects white counts to go low and does not see the necessity of Neulasta. i would like to hear other oncologists opinions!
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LisaAnn,
My Onc says she prefers to give it the day after chemo to prevent the low count. I guess because you're more susceptible to infections and other sicknesses when they get too low. It's probably different with every onc. I just had some labs done, my white count(WBC's) were fine but my red cells(RBC's) were low. I heard you can get a shot for that too. My onc said that fatigue is a sign that the RBC's are low. I didn't ask for one though. The less shots the better at this point!!!!!!!!!!!!
Donalee
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Well, I'm back from treatment #2 (and some shopping <lol!>).
I managed to get myself all tweaked out about the port this morning before I went because the bruise is SO huge and sore and I just did NOT want anybody touching it. My chemo nurse said tough nuggets and did it anyway (love her!). I ended up crying mostly because I was so stressed and when she stuck the needle in she didn't hit it the first time and had to move the needle a bit and that made the bruise hurt and I just lost it from all the stress. That aside, I can see why the port is going to be about a million times easier. I felt like Seven of Nine hooking up for my regeneration or something. Much faster and easier. The infusion room at my hospital has I think something like 12 recliner chairs around a "U" shaped room with windows on all sides. The nurse's station is in the middle and there's coffee and homemade cookies and candies for everybody. I'm going to bake some cookies to take in next Friday. It's a pleasant environment and everybody there is extremely nice. Every day the volunteers come around with caps they knit for the chemo patients and if you want one, you can pick one out. It's all very sweet.
I found out in my pre chemo appointment with my Oncologist that part of changing over to weekly treatments also included changing my regimine a bit. Instead of getting Taxotere, Carboplatin and Herceptin, I will now be getting Taxol, Carboplatin and Herceptin. She told me studies have shown that Taxotere doesn't work as well given weekly and that Taxol doesn't work as well given in 3 week cycles so for weekly the Taxol is better. It's supposed to be less nauseating as well and they're all very certain that I'm not going to be sick any more. We'll see.
So, you girls going to kick me off your thread now that I'm getting Taxol and not Taxotere?
)Kris: How cool to meet someone that knows the Northwest! Yeah, I love it here as well for sure.
Magentagirl...I've heard of Neupogen. It's another form of Neulasta. My Onc was thinking that one option for me might be to have Neupogen given in smaller doses over a few days, instead of one big dose of Neulasta and that might keep me from reacting like I did before, but in the end she decided to change my regimine instead.
LisaAnn...Yeah, you don't want low white counts if you can help it I don't think. Low white counts leave you susceptible to all kinds of nastiness. Can you imagine getting a common head cold and having it turn into pneumonia or something worse because your white blood cell count was too low to fight it? That's what the Neulasta prevents. I definitely see the benefits of it and even though I reacted badly to it, it worked like a charm. My white counts never dipped.
Anyway, it was nice to come home and see all the posts. I hope you all are doing very well and looking forward to a great weekend!
Alyson
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Hey girls. Keep up the good work ladies.
I got the neulasta shot every time after chemo,,,,,,,well the day after chemo. Once I had to get the shot for low RBC's,,,,,,sorry dont remember the name off hand now.
You have to be very careful,,,,,,,,because having low white counts is not good. About midway thru my chemo I got a really bad staph infection,,,,the MRSA kind. I got a sore in my nose and my nose and under my eye got swollen,,,went to the ER and he did a culture and he gave me antiobiotics but it got worse. Then my upper lip was so swollen I looked like one of those Whoville characters on the Grinch. It was awfuuullllllll. Got the results back of the culture and it was the MRSA kind. So got on the right antiobiotics and it went away. Besides not feeling well during that time and looking and feeling like an alien,,,,,was not fun. So just keep on top of things ladies.
OMG,,,,,,,,,,it is sooooooo hot here today. I want to not wear my wig but my hair looks like crapola. Think I'm gonna actually go to the salon tomorrow and have her kinda do a little trim so at least all the hairs would be even and see if she has any advice on what I can do with it. I love my wig,,,,,,,,and it never really got hot for me except now since the weather is warming up.
Have a great weekend,,,,,,,,,,,,,take care of yourselves.
Cindy
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I read each post with such intensity as I begin Carboplatin and Taxotere next week. It will be every three weeks for 6 months and Herceptin weekly. I don't care about the hair, or nails (although that does sound gross turning black and not even around Halloween where you can disguise it), but oh my gosh I hope I don't get sick. I can handle anything but that. Your post that said you didn't really gave me hope. On the other hand I truly hope I am not that 1% that does. I have diabetes that the steroids are going to play havoc with. I hope they can control that. Today I have it under control with diet and exercise only. For those of you who finished your Chemo...what then? While taking treatments did you drive or have someone take you?
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Cupcake7....My husband went with me for the first 2 treatments but I'll be going on my own from here on out (don't want him wasting his vacation time). I feel completely fine during and after treatment and didn't start to feel punk until a few days after which I think is pretty much the norm. So, if you want someone to go keep you company during treatment that's always nice, but you should be able to drive yourself to and from treatment if you need to. I hope you will do OK, I will keep my fingers crossed for you!
Alyson
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I was flipping through my "Cancer Journal" and I noticed that today is one year to the day that I talked to my original oncologist and hemmed and hawed enough about AC that he finally suggested TCH.
I totally remember my frame of mind at that time...I was certain that my life was always going to be an endless stream of treatments and doctor appointments. I never thought I would get far enough away from cancer that I could ever "look back" on it. As I re-read that sentence, I know that it does not make a lot of sense - but I also know that you ladies know exactly what I am talking about.
Aly: Your oncologist sounds like she is really doing her homework. I didn't know that about weekly Taxol and tri-weekly Taxotere. That is good info to know - because I think that since they are both taxanes, they get lumped into the same category.
I think that this next treatment is going to be so much better for you. You seem to be in a great frame of mind - which is half the battle! But I will still pray for you anyway - we can always use those extra prayers!
Mary: Thanks for the kind words. I have done nothing but live and breathe MUGA scans, lab work, infusions and Ivs - it seems unreal that I am actually planning my wedding! It's nice when you get past all the cancer crap and get little glimpses of life. Is it even possible that we all will get to the place where this is just a "bump in the road" instead of being our life?
Donalee: I am not sure if I ever greeted you - but I wanted to let you know that you are my beautiful, new hero! I love your avatar and I love that you and Empress both are brave enough to do what I still can't do. I hate taking pictures of my short hair - I think that I look boyish, and not in that Hillary Swank Boys Don't Cry cool way - more like that Rosie O'Donnell angry and yelling at Trump way!
Lisa Ann: If your clinic charges $46K for chemo - I bet they would charge a pretty penny for that Neulasta. I had heard some clinics were charging as much as $15K per shot! I am so glad that I never needed any of that. I guess if my counts had fallen they would have poked me - but my WBCs were always in normal limits, and although my RBCs were a hair low - they were within my pre-chemo range. I have enough aches with the Herceptin and tamoxifen - I can't imagine what some of these ladies are going through!
Magenta: Congrats on your anniversary. My fiancee and I want to get married on my cancerversary, but that is April 30th...which is a Thursday and would make it awkward for all the family that would travel to celebrate with us. So we are going for that Saturday - but we will always celebrate my cancerversary.
There have been a few threads about when the real cancerversary is - some use surgery dates, others go by chemo - but since the treatment protocol is different for everyone - the ACS goes by date of diagnosis...so that is what I use.
Kris: Welcome! I can't scroll back right now and read your posts, but I sure am glad that you found us - I hope that you get come comfort from these great ladies!
Cinrae: I saw that Carolina answered one of your threads - she was suppossed to tell us about her nips! Maybe all the enthusiasim about her nipples scared her away from us! I think about Good Vibes a lot - hope all is well there - it was so sweet the way she and her hubby posted together.
Empress: I loved the camp song! How can you go wrong with the word tittie? In my opinion - you just can't!
Terri, Sue and all the other TCH Sisters...hope it is going well. Keep posting and I will check in again soon!
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Hey Cupcake!
I didn't forget you. I wanted to give you a new post so that you didn't miss me and that I give you my experience.
Nausea
I never got sick - not once. I started out taking Compazine as directed for the three days following each treatment. However, on the thrid day after my first treatment, I had an adverse reaction and had to be switched to Zolfran. It was really expensive, but it worked.
There are a dozen meds out there that can control this. My suggestion to you is that you call them and ask what they plan to give you pre-and-post treatment for nausea. It is a different protocol all over - but most places give you some nausea meds (Kytril is one and there is another that starts with an A, just to name a few) before treatment. Sometimes it is a pill (mine was) and others will put it in the IV or port.
Steroids
We have been talking a lot about these - I can't believe the difference in the doses. I thought that my dose (10 mg the night before... 10 mg right before and 10 mg the night of my treatment) was standard, but some ladies here have said that they take much more. I know a friend of mine takes them for a week! I was one wired chick after my treatment - and I noticed that myblood sugars were high - all SE of the steroid - and all went away after I stopped taking them.
But having said that - you are right to be concerned. My suggestion is to ask them how much steroid they plan to put you on, how many doses you need for each treatment - and why they are having you take them. Let them know that you have diabetes (which they should know - but then again...you never know!) and that you are concerned about high doses of steroids.
It is important to know why they are giving you the steroids. I was told that it works with Kytril and other anti-nausea meds to help control nausea. Some women have higher doses of steroids for the added benefit of controling allergic reactions. I was able to have a lower steroid dose and I had Benedryl to control allergic reactions. Maybe that can be an option for you - you can ask them.
I was not able to drive myself because the clinic was 45 minutes from my house - and the pre-treatment Benedryl knocked me out. I usually could not rest during the treatment (thank you Decadron) but by the time I was on my last bag....my lids got pretty heavy.
Your first day is long....well, they are all long if you are on the every 3 week schedule...but the first time is a good time to have someone with you.
So, in a nutshell - call! Call them and ask them to walk you through every moment from when you walk in the door until you walk back out the door. Tell them that you want to know what they give you, and what they do to you....and make sure to ask why. Knowing all this will help you, and they won't think that you are difficult - they will think that you are informed!
Good luck and let us know what they said!
By the way - I'm not just a survivor I am also a nurse!
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Cupcake: I got Aloxi in my IV to help with nausea. I had Kytril to prevent nausea. I used it once every treatment; didn't need it for the last treatment. I also had Ativan to use for "break-through nausea". I felt that way once -- dizzy and sick to my stomach, but I never vomited. Ativan is great for knocking you out when you really need to get sleep -- a side bonus.
I had my neighbor drive me to my treatments and then she'd pick me up afterwards. I could probably have driven myself but it was one less thing to worry about. People really want to help you out in some way as you are going through chemo and this is one way you can have them help you.
After chemo I had radiation (33 treatments). I still get Herceptin every three weeks. Monday is my next treatment. My onc is weaning me off office visits. I used to see her every treatment, then it was every six weeks, now I'm going nine weeks before I see her again. I am also on Tamoxifen with minimal side effects.
My onc does a full chem panel and tumor markers every two months (or is it 3?). CBC used to be every three weeks but the last time I went six weeks in between CBCs.
I get an echocardiogram every three months since I'm still on Herceptin. I have had my follow up mammogram (benign) and also had a chest CT. I'll get another chest CT in Oct. and if that shows no change, they will be every year. In Oct. I'll also have an MRI, which will then start the cycle of Mammo/MRI alternating six months.
I'm on a 6 month cycle for the surgeon and radiation oncologist.
So that is life after chemo. There is life after chemo :-)
Terri.
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Nanegge,
Hi! Thank you for the nice welcome. WOW, What a post! You are my hero for answering so many questions! You can be my nurse any day.
Aly,
I love the 'Seven of None for regeneration' reference! That is a perfect description of how chemo goes(if your a Trekie) hahahaha
I'm so glad your experience was better! But that port thing really sucks. I'm going to a new center on Monday and am really nervous about having a new nurse! I hope she's as good as the last and gets it right away or I'll be cryin too!!
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Tomatojuice,
I get TCH number 4 on Thursday June 26 so we are almost exactly on the same schedule.
I still have hair too- about half fell out (all the pepper from the salt and pepper came out)- the salt is now growing. Since i buzzed it earlier, the little buzzed pieces are starting to fall over with new growth and I have new pepper coming in- I look like some strange calico cat on top! I thought it would all be gone by this time too!
I had a facial last weekend which was a nice treat - I encourage everyone to do nice things for themselves during this ordeal.
Im officially half way through but have been more down in the dumps this past week than before- I guess its the middle of the chemo road blues!
Kristy
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Aly, hope taxol works better for you. My onc asked if I wanted to switch to it since taxotere makes me so sick, but with 2 left I decided to "tough" them out. I'm sure your still welcome here and I hope I would have been if I'd switched.
LisaAnn, I really thought the neulasta shots were all part of the deal. I've never had a problem with my white counts and I've never gotten the accummulative tiredness they all talk about. I would definitely question that.
Cindy, It's always nice to see your pretty picture and friendly posts pop up, especially since you created this conversation. I do have a question I hope doesn't offend you. If you started chemo May07, why still the wig?? Are my dates off?
Cupcake, Good luck with the first treatment next week. My hubby drove me to the first 2 tx's, but since then I drive myself to tx, and shot appointments. He only drives me when I go for the IV, cause by then I'm too sick. I probably have about 5 days that I don't drive. I hope I'm not the one scaring you, remember I am the exception with how sick I get. There are a bunch of the gals that do pretty good including Nan. Listen to them, not me.
There's been some talk about ativan lately and wow it is a great way to sleep. Since I'm on a prolonged dosage of Decadron due to nausea, I took one Thursday and Friday nights and slept like a baby.
It's day 4 for me and I'm still feeling okay, might even go to lunch with my daughter since my hubby's golfing. Hope everyone else has a good weekend. Mary
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Hi, cupcake, I only had one TCH treatment so far and it was not bad at all. I have been reluctant to post since my experience wasn't bad at all. I didn't want to sound all nanny nanny nah nah. But at the risk of that Ill say I never got sick. I had a stomach ache alot and took compazine a couple of times just because i felt a little nauseous. Appartently the magic best drug of choice is emend. My HMO offered it for me to buy at some exorbitant price but the PPO doc I am switching to is arranging for me to have it through SAMPLES. So you might want to ask your onc if he/she can do that for you. and if they say no,try calling the company that makes it. It's bad enough to have to go thru all this but no need to get sick! Don't be scared, it's not as bad as some other chemos. I took Ativan the morning of to help with my fear level. Why not? Poor body is getting inudated with everything under the sun-might as well feed your head too. no foliicular fallout for me yet. I am expecting it though and have my wig and scarves lined up. I like the Muslim scarf thing and may wear that-hajib i believe it is called
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I am reading everyone's posts trying to figure out what to expect. I have my first treatment (taxotere, cplatin, and herceptin) on Tuesday. Weekly herceptin, and all three every three weeks. Then after 4 treatments, I have herceptin every three weeks.
Esp. for the first 12 weeks, is there anyone out there with good news.....I was kinda hoping that I would get through this without too many bad side effects. Will I be able to drive myself home after my first treatment or am I going to be too sick?
Does anyone have a two week estimated calendar, like Day 1 good, Day 2 good, Day 3 good, Days 4 to 7 are not good, Day 13 hair loss, etc......
I guess its somewhat different for everyone.
I'm a little frustrated because I don't know exactly what to expect, and I think I do better when I am in the know.
Also, do you just trust the nurses to know what to do? My doctor said he doesn't need to see me on the first treatment, but will see me when I come back in three weeks.
Thanks, MA
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Hi all TCH gals -
Welcome newbies getting ready for your first tx. I'm another one who has had minimal side effects - I get the Neulasta shot the day after tx, and then have a few achy days, but really nothing too awful. I did get violently ill after tx2, but then everybody else in the house started puking too, so we figured out that it was a virus, not chemo. I get treatments on Tuesday and wake up Sunday feeling pretty much normal again. When school was in, I went back to work on Monday. I exercise at the Y and do pretty much everything like normal during my two 'good" weeks. Good luck to you!!!!!
Aly: I'm on the three week schedule, but I also get taxol/carbo/herceptin, so I guess we both can stay on this thread!
Nanegge: Thanks so much for your optimistic posts - I can so relate right now to the feeling of "never being beyond cancer." It helps to read that we WILL get past this!
Everybody have a good weekend -
Sue
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Hey, Mary Anne!
I realize that I might be a little bias...but I think that trusting the chemo nurses is a pretty good idea! I think that the oncs are great and it is good to have someone read the test results and write the 'scripts...but when it comes right down to getting your hands dirty...you can't beat a good nurse! They live these SE right along with you - and the ones who have been doing it awhile, can read the signs before you even feel them.
You will get to know the nursing staff in the infusion room pretty well - and you can tell who knows their stuff by the way they interact with you. If you see a nurse who looks like a better match for you - go ahead and request them. I see different docs and NPs when I go to my appointments - but I always get my nurse for my treatment. If she wasn't working - I'd reschedule...that is how important I think my nurse is!
As for a day-by-day accounting - everyone is different. I was taking round the clock nausea meds (compazine at first then Zolfran) and that worked very well fo rme. I was never sick. I was tired - some days more than others, but not bed-ridden tired. My main complaint was the hair (shedding started around Day 14 and needed a wig by the third treatment) and Chemo Mouth - an awful metallic taste in my mouth that started the day after my treatment and lasted until a few days before the next. Chemo Mouth came on earlier and lasted longer as the treatments progressed. It was completely gone 3 weeks after my last treatment and has not returned.
I have not had lasting effects from chemo. My hair is growing (not as fast as I'd like, but I would like my hair to come back like magic!) - I have some aches which I hope is Herceptin and not tamoxifen - and my ankles swell a little. But all in all, I was able to get through without the real bad SE.
There are more like me out there - they just don't always post! Make sure you talk to them before you go in - call them on Monday and make sure you know what they are giving you before and after to prevent the nausea. Get all the info you can from them - it does help when you know!
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Mary,,,,,,,o no,,,,your comment doesnt offend me at all. I finished chemo the end of Aug 07 and continued with herceptin till the end of April 08. I'm not sure if the herceptin slowed the hair growth or what,,,,,,but as of right now my hair on top is like 2 in and the back is like 3 in. Seems as though the back grew in first before the top. I have a mullet thing goin on. I was going to go to the salon to maybe have her trim it up and give me some pointers as to what to do with it. I've never had hair this short and right now I'm just not comfortable going out in public without the wig. I'm sure its just me though........just not to that comfortable zone yet. Silly huh? I admire those of you who can go comando though,,,,,,wished I could feel comfortable about that.
OOOOOOOO and congrats on the engagement Nan. How fun to be planning a wedding. When my daughter got married.........we had so much fun getting it all together. We did a lot of stuff ourselves,,,,,,,,,,made the invitations and the favors and the flower girls baskets and all. Good times.
And to all the ladies,,,,,,,,,,just keep in mind that everyone is soooo different. Not everyone reacts the same to chemo. Just keep on top of the side effects and let the dr know everything. I totally loved all the chemo nurses and the PA,,,,,,they were wonderful.
Have a great weekend. Its been so hot here lately.
Cindy
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MaryAnne: I started chemo 9/24/2007. I drew little faces in my calendar noting how I felt each day. So I can give you the two week timeline :-) The first chemo has the fewest side effects but it's harder because you don't know how to deal with them yet. All these new skills you can learn, like going to the bathroom while hooked up to an IV....
Does your treatment center give a "chemo teach"? I had a session before I started and the nurse reviewed all the possible side effects, let me know how to deal with them, reviewed the drugs i'd be getting, made sure I had prescriptions, etc.
As for driving yourself home, it depends on what kind of drugs they give you. Some people get benedryl which makes them sleepy. I didn't get that and could have driven myself.
And yes, you can trust the nurses. They are very knowledgeable and caring. I didnt always see my onc, but always saw a nurse practitioner and then let the chemo nurses do their job.
9/24 (Monday) First treatment. Hyped up on decadron after treatment. Ate a good dinner, felt fine. Had trouble sleeping at night because of the steroids.
9/25 (Tuesday) Got up and went swimming as usual. Worked a full day, went to a meeting at night. Appetite was fine. Had the steroid face flush. Shaking chills at night.
9/26 (Wednesday) Still feeling well. Worked a full day. I could feel myself winding down in the evening. Decradron has left the building. Shaking chills at night, called into the triage line. Doc that called me back said to take Tylenol (I didn't have a fever).
9/27 (Thursday) Breakthrough nausea in the morning. Worked from my sofa. Nurse called back to follow up from the call the night before and suggested I take Ativan for the nausea but if I wasn't able to sleep take Kytril twice that day. Took the Kytril and the nausea went away by noon. Appetite wasn't great. Had a craving for hamburgers. Didn't go swimming like I usually do on Thursdays.
9/28 (Friday) The face in my calendar shows I was feeling okay, not great. I remember going to McDs to address my craving. "Sewer mouth" started.
9/29 (Saturday) Appetite is improving but have a bad case of sewer mouth.
9/30 (Sunday) Go swimming in the morning. I think I did about 2500 meters, so was happy. Sewer mouth continues.
10/1 (Monday) My calendar notes poor sleep. Once I started sleeping poorly I always felt almost normal. I slept like a baby during the first week.
10/2 (Tuesday) A smiley face. Sewer mouth must have been going away.
Rest of the week. Normal swimming schedule. No meds needed.
Fast forward to 10/6 ((Saturday) Pubic hair is starting to fall out. Some strands leaving my head. I have enough energy to go buy 1/4 cord of firewood, load it in my car, drive it home, unload and restack, repeat (couldn't fit it all in my car in one trip).
10/7 (Sunday) The hair from the nether regions leaving before the hair on my head. Not enough falling out to start wearing hats.
10/8 (Monday) More hair on the head is starting to come out. I'm starting to see bald patches on my scalp. (I had my hair cut to about 1 1/2 inches on 9/20).
10/9 (Tuesday) A really bad hair day. I went out in my back yard and starting pulling out great gobs of hair. Figured the birds could use it for nesting the next spring. I started wearing bandanas and hats.
After my second treatment, I have frownie faces on days 4 - 8 and a neutral face on day 9. After my third treatment, I had frownie faces days 4 - 9.
Hope this helps. You will get through it. The anticipation is the worst part.
Terri.
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Terri,
That is a great timeline....I had a journal, but I was not very good about writing in it every day. I guess that I thought since I was living it every day - I wouldn't want to ever re-live it. It was kinda the same reasoning that kept me from taking pictures of my hair loss.
But looking back now - I wish I had done some chronicling (did I spell that right? Where is Empress when I need her?) because it is a great way to see how far you have come. I have a few pictures in recent months of my hair growth and I try to document my SE so I can determine whic medication is causing which bloat or ache.
So, thanks for sharing that timeline - really great idea and really helpful for the newbies!
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Hi Everybody. I'm back from getting my head shaved and sorry to say that I'm in a deep funk because of it. Molly freaked out a little bit even though I was hoping she wouldn't. That breaks my heart more than anything. Not sure when I'll be up for posting a photo but hopefully I'll feel better tomorrow. I hope you all are having a great weekend.
)Aly.
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Thanks for the replies, ladies! All along, I couldn't wait to get started, and thought for sure I can do this, but now that it is close, I am nervous about it. I really hope the illness effects are minimal....I think I can handle the hair loss.
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Hi Aly,
It is very normal to feel "in a funk" about shaving your head.
Personally, I have a high threshold for pain..I have been active in sports my entire life, and have "played through the pain" many times..I NEVER cry because of physical pain, but when I had to shave my head, I cried and cried like a baby!! The emotional pain one is going through with battling this evil disease is extremely difficult, and it is normal to feel depressed, upset, etc...I had shoulder length blond hair and it killed me to cut it off!! I was told by my family and friends its "OK" to cry...you don't have to be "miss tough" right now..get it out..and I did, and it helped me a lot!!
My husband was wonderful!! In fact, he even helped me with shaving my head. I also cried, because my husband "shed a tear" for me, as he knew how much it hurt me to shave my hair, and he felt so badly for me..I admit it..I am/was concerned/vain about my appearance... but I have adjusted to it and I know this is a temporary condition. In one year, I'll have my blonde hair back..it's just tough...no way around it!!!
I hope your chemo went smoothly, today!! I hope you have a restful weekend!!
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Terri...awesome, awesome timeline. It would be hard to discern anything that clear from mine, because I keep full-on diary entries on my computer (mostly because I'm going to give my main character a little case of the b/c in my rewrite and I want to be immediate with reactions to things and details). Many of my days have been "frowny faces" physically and "happy faces" emotionally or vice versa, so it's hard to just come up with one "label". But thanks, I'm sure that timeline will be a useful tool for many ladies just getting started.
Hey Aly; I know what you're saying. Mikey, my 9 year old, won't let me cuddle him at bedtime without a head cover. My HUSBAND was so upset with buzzing my hair, that he was stealing my Xanax while I was giggling in my studio taking pictures of myself with PhotoBooth and posting them here. But I'm weird. I think your response is maybe more healthy. You're mourning, in a sense. Maybe I'm still in denial or something. I had a couple friends today tell me they'd shave their heads in support and I said "No, because then I won't be special anymore." Maybe it's all about being narcissistic. I actually thought about having my husband take a razor to it so it's smooth and then having all my friends sign it with a Sharpie. But he said that's just too weird.
Nan and Donalee...I think you guys will enjoy this. I'm going to ComicCon with an 18 year old friend of mine who thinks I should dress up as Avatar (from Nickelodeon). I costume plays, and I also have somewhat of an androgynous figure, so I think that'll be a winner. If I do it, I'll post a photo. By the way, Nan, I haven't congratulated you on your engagement. All the best to you!!!
Here's a medical question. So I'm going into cycle 2 this week, and I'm supposed to use Emend before I go in for the infusion. I read the patient insert, and studies seem to indicate that Emend has a synergistic response with decadron, and that if you use Emend, they should halve your dose of decadron. Has anyone had that recommendation from their doctor? I'm calling my nurse on Monday, because I can't tolerate an additive effect of that decadron...I'll end up jumping off the Coronado Bay Bridge with an umbrella and expect to fly or something...0 -
Kj1957...thanks. My husband keeps his emotions pretty much inside so I really don't know what he's thinking. I know my 2 (nearly 3) year old is looking at me funny and turned her face away from me today when I tried to comfort her before her nap. That broke my heart more than anything. I feel pretty alone right now. I'm sure it will be better as the days roll on but right now I can't even bear to look in the mirror. I bet everybody goes through a similar thing.
Chemo yesterday went fine, just a little pain with the brand new port. Don't feel so well today but am trying to deal with it as best I can. I'm hoping very much I don't get sick this time like I did last time. Fingers crossed!
We stopped in at Shane Co. today to have my wedding ring inspected and cleaned. We've been going there since our daughter was a newborn and everybody knows us. One of the girls there brought out a pink baseball hat for me with the breast cancer ribbon on it all done in rhinestones. I guess Shane Co. is a heavy supporter of the Susan G. Komen foundation. She told me to hang in there and that I would get through it and they'd be thinking of me. After having just come from the mall where so many people stared at me like I was a freak that I wanted to yell "DON'T WORRY, IT'S NOT CONTAGIOUS" it was nice to feel some compassion and understanding.
Aly.
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Aly...we're typing at the same time again, sort of like instant messaging. Hey, so you're on my prayer list for the next few days, both on the physical and emotional levels. I've started going to a counselor with the goal of lessening the psychic suffering so that my emotions won't be ramping up the physical suffering. I hope it helps. I have trouble imagining what it would be like in our situation with a much younger child. Mine are cool with it pretty much. I also have the support of all these high school and college age kids in our church who love me and tell me I'm their hero and tell me I'm cute. If there was a way I could send some of that your way, I would. Hopefully, when you get some support, like in the jewelry store, you can roll it around, savor it like the best chocolate and recall the sweet taste in the darker moments. I have heard from some people that the bald phase is a good time to play around with and accentuate makeup, because you can't hide behind your hair. A woman told me today that she finds women who are bald quite beautiful for that reason. I'm sending you health, strength, and most of all, peace. I hope I don't sound like I've been toking MirthWeed in the Happy Hut or anything...I feel you're going to be on top of the world once you get past the place where you crashed last time.
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Thanks Shel. As always you're very supportive. I'm already going to a counsellor twice weekly and have been for some years now because I already struggle with depression and anxiety. Like I mentioned to you earlier, I have trouble being a "glass half full" person even though I have some brief shining moments occasionally.
) Today's a bad day. Tomorrow will hopefully be better. I'm very tired and that never helps.Thanks for the prayers! As always you have mine.
Aly.
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Aly,,,,,,,,,,,hang in there girl. Everything will be all fine ok? We all have those down days,,,,,,and its ok. We have earned that right to be bummed. Its ok to vent. We are all here for you. You are in my thoughts.
I soooooo admire those of you gals that go commando. I never took one picture of being bald or even now with my hair so damn short. I just could never get myself to that point. I guess its a self confidence issue I have. I always wore something on my head,,,,,,,,either a hat or wig. I always figured if I couldnt look at myself being bald, I couldnt expect anyone else to. My kudos go out to those of you that can. Such an admirable trait.
Have a good rest of the weekend and take good care of yourselves.
I also kept a journal calendar of how things went during chemo and radiation. After a while you can see a pattern on the side effects. Although,,,,,,they got progressively worse for me each treatment. I dont want to bum anyone out,,,,,,,,so just keep in mind that we are all different.
Cindy
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Hi Cindy. Oh I didn't go commando, believe me. Not enough confidence for that one. I had a baseball cap on all day but of course you can still see quite obviously that there's no hair underneath it so I garnered a lot of stares. It's like having a neon sign over my head that's screaming CANCER!! OVER HERE EVERYBODY!! CANCER HERE!!! I hate that!
)Molly seems to be settling down a little bit. She's been saying "momma's hair's cut" and I've been saying "yep, momma's hair's cut. Doesn't it look kind of funny? Don't worry honey, it will grow back, it won't look funny forever". At least she's not turning away from me right now although she still looks very puzzled. Poor little kid. It's hard for me too trying to act like everything's Ok and "isn't momma's head cool?" when what I really want to do is curl up in a fetal position and cry my eyes out.
I've been keeping a journal of everything that's happened to me since I was diagnosed. Not day to day how I'm feeling kind of stuff, but I wrote about everything I went through and how I was feeling during all of it and I did write about how sick I was after my first chemo. I haven't added anything about The Great Follicular Fallout yet but I will shortly. My mom went through breast cancer when I was 8 years old (33 years ago). She's 88 now and can't remember much about it except that she's been 33 years with only one breast (no reconstruction) and she's still embarassed about it. I want Molly to have something she can read later about what I went through so that when I'm 88 and can't remember details, she'll still be able to know what it was like for me. I hope it will help us bond and most of all I hope it will encourage her to do what she needs to do to always take good care of herself. She'll have to start her mammograms at 30 now (earlier if I can make it happen!) instead of 40 because now she has two maternal family members who had breast cancer (I don't have the gene, thank God). Of course, my biggest prayer is that by the time she's 20 or 30 (earlier please!) they will have cured this bugger and all the other bugger cancers out there and nobody will ever have to go through this again. Well, that is if they can do it without turning everybody into zombies like they did in "I Am Legend" (lol!).
I have to say before I sign off for the night that CANCER SUCKS!!!
Hugs to you all,
Alyson
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Wow Aly,,,,,,,,,,,,good for your mom. My daughter is 30 and her doctor wants her to have a mammo soon too. I was just shocked at how many young gals were in chemo with me. Its just so sad. I guess I used to think that breast cancer hit those of us in our older years,,,,,,but sure isnt so anymore. Its heartbreaking.
For me,,,,,,,,the hardest thing was losing my hair. Everyone would always say,,,,,,,,,"Dont worry, it will grow back". But they were not me. They just didnt know how it felt. But you know what,,,,,,they were right,,,,,,,,it does grow back......at a snails pace I must add,,,,,,,,lol Well, not quick enough for me. I was fooling myself at the beginning,,,,,,,I thought right after chemo my hair would come in like wildflowers and I could ditch the wig. What a dreamer I was. lol
I'm sure your daughter will be just fine with it all. She may not understand everything right now,,,,,but when she does,,,,,,,you will be her hero.
Take care,
Cindy
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