August 2010...anyone starting chemo besides me?!
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Hi Sweeney- I know exactly how you feel I bought a wig before I had chemo, loved it, and now my hair is gone and I put it on Sunday, wore it and hated it. I didn't wear it yesterday, but put it back on today and I still feel like it looks weird. Everyone says it looks nice but I feel so different. This hair loss thing has been the worst for me and I wish I would just get over it!! I'm thinking time will help, but it just doesn't seem fair we deal with so much and then we're bald. Go figure. I think I like scarves better but I know at work a wig is going to be so much more professional. I will just balance it from scarves to my wig to letting it all hang out at home. I just finished chemo #2 of four (and I know I have it sooooo much easier than alot of you) and I can see the light at the end of the tunnel but it doesn't really get easier for me it seems to get harder. I hope I can keep up the "supposedly" good attitude everyone says I have. Because lately I feel like I'm loosing a little ground. At least I'm on Day 6 of my last chemo and if anythings like last time I'm heading into some better territory as far as feeling good physically and emotionally. Enough of my complaining I just think I needed too and what better forum than with all of you. Sleep tight everyone. God Bless.
Michelle
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and I love the idea of the Pandora braclelets, but if I told my husband I wanted one, there is no telling where he would go and what he would come home with........
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Adey: you better get in shape for that China wig marathon you are going to be an unwilling participant in!!!!!!!!!!! I found out the PET is just like the CT in style only it takes longer. I had to have fun with that TAC acronym...I really can't help myself!!!!!!
Spttm: the average person loses 100 strands per day. I am pretty sure my niece, who was in hairdressing school, told me that once.
Sweeney: I am totally for the whole bald thing! The only reason I got wigs and hats is b/c I am going to be going through December with chemo now and it gets cold in CT! Yeah, they do look like dead animals unless you want to pay thousands! The scarves are ok...I hang earrings off of them and adorn them a bit. Oddly, I am embracing this time to try some different looks. I guess I feel I have been remanded to this chapter in my life so I am going to make the most of it! BTW, I forget who, but someone said their sister owns a wig shop and using ponytail holders to secure the scarves instead of trying those tricky knots is best. That was good advice.
DebJ: I understand you want to get to work but don't forget that your immune system is way depressed. I work in a building with 300 people and by this time in the year no one has sick time left, their kids are back to school soon bringing home every flu and virus known to man and b/c have used up their sick time already, they all come into work sick. I would be cautious about going into crowds etc until chemo is done b/c, from what i understand, with our white cells down, we can't fight much of anything, so any infection is tantamount to blood infections which can be fatal. I am sure your oncs have talked to you about this but if I was a schoolteacher or someone who works in a huge building with people with no sick time left for the year, I would be cautious about work.
Good night and sweet dreams to you all
Liz
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sweeney UGH! So it still might be coming...the neulasta pain. ack. We'll see how tomorrow is!
I'm drowsy right now but I haven't felt totally destroyed -not since throwing up last night. I think I'm finally getting back into eating normally again. Tomorrow will be day 3 - I hear that's the "rough" one - the big bump in the road. But I'm doing well today on day 2, so not going to borrow trouble just yet!
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Rachel: that is so cute that your husband got the Pandora bracelet for you! How thoughtful and sweet!
Michelle: things happen and the only you can control is your response to them. You could have a bad attitude about chemo but that does not help a thing. It might even get harder before it gets easier and you don't have to be positive but don't let yourself fall down as there is nothing to fall down about b/c it won't change a thing. If you paint it positive, it is only hard on your body; if you paint it negative, it is hard on your mind and your body. It is not easy, though, I do understand.
Liz
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Well I googled how many hairs on the head. Depending on color 140,000 for blonde, going down by 10,000 each for brown, red then black. I was always under the impression we lost 100 per day normally. What I don't understand is why they don't offer cold cap therapy other than cost. It is called a penguin cap but you have to rent for length of tx by the month and put in sub zero freezer or keep on dry ice the day of treatment. It supposedly prevents hair loss in 75-80% of patients. Also involves 19 different jel caps and some serious velco and help putting it on. With the temps in the 90's and the ensueing hotflashes it might be welcome. I am going to try the ice chips in mouth to prevent the mucocitis and the fingers and toes in ice water to prevent nail loss and neuropathy.
Glad to hear you are keeping hydrated. Not only protects the bladder but should help with the constipation. I think anything we can do to feel in "control" helps.
Went to BS today and she drained another 110ml of seroma so the sloshing is gone again. On the plus side of things I also got my microbead foob today from TLC. I keep looking down and am not used to being so "endowed" and I ordered the right size. It does hide the belly jelly roll ;-0
Hugs to all,
Shawn
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lilbraylil: Go for the pandora bracelet love the idea of a new bead for each treatment. I'm a trollbead person myself.
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I took my Nelasta shot at about 9 PM this evening. I am taking ibuprphen and hoe that cuts the pain some. I did finally get to sleep around 300 I guess and slept until 11 Am. I felt pretty good today except the miserable. headache which the Ibuprohen knocks down by about 50%.
I am looking forward to feeling good again like I did over the weekend. At least I know that is possible now, I didn't know after the first round so I am now encouraged.
I am losing my hair and am afraid to touch it or comb it and I didnt even wash it today. It doesnt tingle or anything. My fingers do though. And I am peeing like crazy. Hah Oh the pink poee went away by last night, last time it was still pink on day two.
Hope I sleep better tonight. Keep you all in prayers, God heals.
Oh yeah., I am 65 so stop telling me you are senior citizens you whipper sanppers in your 40's, you are but little babes.
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I really appreciate our group. It helps me so much to have others to go through this with! Thank you all so much for your thoughts and wisdom and words of encouragement..
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Okay, so this morning I'm wearing the wig, figured out how to style the sides of it so I don't look like I have a dead animal on my head...and feeling pretty good about the whole thing. Get the kids fed with breakfast, then off to daycamp dropoff. Max is 4 and Zella is 7, we're standing there talking to their counsellor about daycamp stuff when Max says in a really loud, booming 4 year old voice, "MY MOM IS WEARING A WIG. TAKE IT OFF MOM. SHOW JEFF WHAT YOU LOOK LIKE!! IT'S SOOO FUNNY!!" (Please note "Jeff" the counsellor is about 20 yrs old and looks like a young Brad Pitt. Great.)
It's official. I hate my wig forever.
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That is too funny! Gotta love little kids, they are soo honest!
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roseerx, tell me about putting your fingers & toes in ice water for neuropathy. How often and does that really work? Wishing ever one a good day! Coleen
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I found several articles in the medical literature about the cold therapy for the scalp, hands and feet. Elasto-gel has a cold cap (Elasto-Gel Hypothermia Cap), I was going to make my own hand and foot things. No one at my center uses cold therapy but the coordinator said I could do it so I thought I would. You can find threads under 'cold cap' here. I think it is primarily for the taxotere part of the treatment.
Here is a link
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Hi all! Hope you are having a good day. I am sorry for those of you who are feeling so crummy right now.
I can't remember who asked about age (sorry), but I'm 39, though not by much.
I also can't remember who asked about the Neulasta shot (sorry again), but I thought I'd tell you about my experience with it, even though my doc said I had a severe reaction. She keeps telling me that my weight being low has caused my side effects to be harsher and longer lasting.
Anyway, I went in for it on Day 2. But the end of the day I was having back pain. Then, for about the next five days I had intense bone pain. It happens in your long bones, like femurs, tibia, fibula, ribs. I had it most in my ribs, all the way around from front to back, and in my shins. It hurt. They had given me Tramadol and Darvocet for it, but neither was strong enough, and Darvocet makes me sick anyway (which I told the nurse to no avail), so I finally ended up taking Dilaudid (a much more powerful narcotic) that I had left from post-surgery. Didn't quite make it go away, but it did help a lot. After about Day 6 or 7 (don't remember), it stopped. The hardest part was that at the same time, the taxotere was causing really intense muscle spasms, especially in my back, so for a handful of days I felt pretty incapacitated. I generally have a very high pain threshold, but the combo bone and muscle pain was , well, really bad. I was still able to get out some and do some light walking, though, so I wasn't bed-bound the whole time. Keep in mind, though, that my onc said Neulasta shots are usually tolerated more easily than this.
I'm on Day 17, and have been feeling better, but last night and today, I've been running a fever and feeling like I'm coming down with something. Glands sore, headache, pressure in my ears, kind of stuffy. It's not enough to make me say that I'm sick exactly, more like I feel as if I'm getting sick. Gonna take it easy today, skip occupational therapy, and monitor my fever.
I'd like your opinions on something else too, if you don't mind. About a week and a half ago I noticed a palpable lump under my arm on the non-affected side. I was scared when I found it. More scared than I was when all this started. But, rationally, I thought that with everything going on in my body -- healing from two surgeries, chemo, etc., and what my doc still thinks was the shingles after my first Tx -- it would be very typical to have swollen lymph nodes that don't mean cancer. But it was still scary. My husband paged my doc the next morning (I wasn't really able to talk because of the mouth sores), and she said that "they" don't usually worry about swollen lymph nodes. But I kept thinking of those of you and others I've known who have felt things, been told they're nothing to worry about, and later found you/they had cancer all along.
Yesterday I saw my onc for a routine visit, and she could feel it, but still was not concerned. I explained that I can't help but be concerned because of these experiences of other people that I know about. She was very understanding of this, and said, "Okay. I understand how you feel, so what we'll do is get an ultrasound of it. But we will need to wait until chemo is over."
Being a dummy, I didn't think to ask why wait, but I am at least relieved that she's going to take it seriously. So my questions are, would you wait? Have any of you had this issue come up? And I would be very appreciative of any other thoughts or advice you might have.
Thanks all. Good luck today for those who have Tx's and for everyone else just trying to get through the day. Be brave and smile as much as you can!
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Oh, and btw, I haven't tried this myself, but I've heard that tea tree oil can help protect fingernails and toenails.
Also, I've seen that a lot of folks have been taking ibuprofen for minor aches and pains. I just want to send out a caution and advise that everyone check with her onc about what kind of OTC analgesic is appropriate for them. I was told absolutely nothing with ibuprofen in it because it can affect your platelet count and clotting issues. It also can cause further stomach upset, but that's minor in comparison. I am only allowed to take acetaminophen (Tylenol for ex.). I believe it may be different with different chemo cocktails, but I just want to make sure that everyone checks first before they take one or the other. PLEASE.
Also, on the thread of nice things dh's are doing, my husband is bringing home big bouquets of fresh flowers for on top of my piano (where I spend a lot of time) or our wonderful dining room table each week throughout Tx. And he is drying one flower from each bouquet to make a dried arrangement once it's all done. He's a sweetie!
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Hi Sweeney--I LOVE your post---I can honestly see my two boys (8 &10) doing the same thing. I get my wig tomorrow so we'll see.
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The cold therapy in theory works by reducing blood flow to head, mouth, fingers and toes so that the chemo doesn't get concentrated there. (this is greatly oversimplified) Obviously cannot be done if you have brain, scalp mets, or mouth throat cancer of some type but we are here primarily for BC. Yes Taxotere is reported to be the worst of these. There are topics on this and I will try to find and bump up to the first page.
My onc said whatever you want to do as far as the cold therapy goes. I haven't asked about the pain med thing but do recall reading about claritin (loratidine) for reactions to the Neulasta. I will try to be more diligent in writing down links. I have tried to copy/paste within this site but my browser doesn't support it.
Back to my daily reading. Spent over 2 hrs the other night and only made it through page 9. You all have to quit writing so slow ;-) .
Peace and Prayers, Shawn
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Sweeney - that is horrifying and hilarious at the same time. Your son is funny!
Wherria - I had a pretty sever reaction to the Neulasta as well. Onc told me "some people feel some bone pain, but usually Advil will take care of it." I took Advil (on his advice) every 6 hours for 3 days and it didn't start to help until that 3rd day in the middle of the day. I had pain in my back, hips and legs. And the strange thing about the pain is that I was always afraid that moving was going to hurt it more - then I would move and it didn't. It was just constant and intense for about 3 days. I'm not looking forward to that again next week.
Hair is just now starting to fall out. It is really short - buzzed to about 1/4 inch, but I can pull little fingerfulls out. I think maybe I buzzed it too early. Oh well.
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Hi rosesrx, are you going to do the ice water or frozen peas or something else for the hands and feet during the taxotere?
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I bumped the Penguin cap thread.
Yes I plan on munching on popsicles and crushed ice as well as something cold for the feet and hands. it cannot hurt. It only has to be done before during and about 1 hr after tx. If anybody has tried this let me know.
Have had a pm from someone who suggested to wait til oncotype dx score was back before starting chemo. Cause once the poisen is in the damage has been done to the good cells. You cannot put the bullet back in the gun once it has been shot. So will be talking it up on the threads and of course with ONC. I am only 5 weeks out from surgery and the test should be back next week. I also bumped that thread show up on page 1.
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HOORAY. I'm going this afternoon and get my last drain out (it's been six weeks!) Now maybe I can move on to chemo. I see my onc next Tuesday. I'm hoping to get an August start with the rest of you ladies (never thought I'd be wanting to start chemo, but I'm tired of waiting and anticipating).
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Day 3 - I'm really under the weather today. Is this normal? I'm still queasy - but not throwing up. I was told day 3 can be difficult. This feels like it's been the longest week of my life. I can't believe it's only Wednesday!
Sorry to complain. I had the neulasta shot yesterday and today I just have some burning in my thighs - enough to make me not want to walk around but nothing horrible. I did take one advil - now I'm scared because of what you posted, wherr - I never thought about it affecting the platelet counts! =:O Need to dig out the tylenol I guess. I have percocet if it gets real bad - the nurse did suggest that yesterday.
I'm just so tired of feeling "icky" in my mouth and tummy. Can someone tell me if this goes away when you're having AC every 2 weeks? I'm hoping for a few good days anyway, at some point in this cycle.....
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Ladyinbama, so happy you are getting your last drain out, congratulations!
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rosesrx Welcome and definitely talk to your onc about the oncotype dx score. One onc that I saw said that he liked to use the oncotype dx score but that for the most part his rule of thumb was to do chemo if any positive nodes (in which case oncotype dx doesn't apply) OR if tumor size is greater than 1 cm. Good luck!
LadyinBama YAY for getting your drain out! I had a lumpectomy with lymph node dissection and had 1 drain for 6 days and hated it so much! I am in awe that you lasted six weeks. And I hope you are able to get an August start date too, though even if you get September, I vote that we make you an honorary member of the August group! I am feeling exactly the same way as you about wanting to start chemo, especially after having a failed start last Friday I am so anxious to just finally get going!
Wherria I am so glad that you are feeling better and your mouth sores have gone away. That sounded so awful! It is interesting that your onc doesn't want to do anything about the lymph node until after chemo is done. I can understand not wanting to get a biopsy, since we are so wary of infections the idea of purposefully cutting into the body during chemo sounds like a bad plan. But an ultrasound is non-invasive so I don't really get why they wouldn't want to just take a look. I would think that if it is cancer, the chemo should kill it and if it is infection it should go away in time, but that still doesn't explain why they wouldn't want to get a look at it with the ultrasound just to be able to monitor it and see if it does get smaller.
Liz When you do your next update, can you put me back in the Future Dates section with a date of 8/27? That is my new start date for the AC/Abraxane regimen. Unfortunately this will push my last treatment into January since I will be doing 4 of each every 3 weeks. I was so looking forward to being done before the new year! Oh well, I will still have to do rads and a year of Herceptin so this whole nonsense won't be over anytime soon!
It looks like we have 4 starts tomorrow so good luck to JUSTDUIT, IOWASUE44, KAZMTAZ, and MOMMICHELLE! I hope you have nice restful evenings and uneventful days tomorrow!
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CALAMTYKEL- Day three was rough for me too, (but I'm on TC for 4 rounds), I'm sorry to say I felt like hell til about day six. And for what it's worth the bone pain got worse as I progressed. My onco yesterday told me to "stay on top of pain, take the meds before it really starts to hurt". So that's going to be my mantra for this next round (2) which I get on Friday. What I can say is that after Day 7-8 I felt GREAT. And have felt this way since. So there is an end in sight.
RACHEL- boys. can't live with'em, can't live without'em.
Max is full of funny. Coach your guys first so you don't have them "outing" you!0 -
wherria - it sort of makes sense. Chemo can shrink tumors and kill cancer cells. So if nothing else, probably your doctor figures if it IS something that the chemo will just keep it under control or maybe eradicate it altogether. It's like how some of us have had chemo first and then surgery. Apparently they feel the risks would outweigh the benefits at this point, of trying to biopsy it and such. I believe an ultrasound can tell if it's solid or fluid filled. I remember that from the cancerous node I had under my arm. But I can certainly understand your apprehension!
I will tell you that many things can cause an inflammed lymph node. When my son was recently diagnosed with lyme, I took him in for a large lump on his neck. All his nodes were inflammed, according to the doctor, who felt them. Now they're down since he's getting better. AND they can stay inflammed long after your body's done fighting an infection.
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JSW: I was pretty sure I messed up somewhere this past week so my apologies and I will definitely take care of that today.
Omaz: U r such a joy! You are always expressing how grateful you are to be on this thread and enjoying the support so I wanted to let you know that it is an absolute joy having you here!
Ladyinbama: DRAIN-FREE!!!!!!! Finally! I am very happy for you. Just this morning I was thinking how stunned and scared I was when I found out I had cancer and then how I was a total nervous wreck before surgery as I had not had a surgical procedure in 23 years. Then I reflected on, just like you, the long time I had the drains in and then finallly getting those out. What I did reflect on most, however, was the feeling of triumph and elation I have with successfully completing each level of this journey. It is almost like Super Mario Brothers! With each level comes more challenge and a greater feeling of accomplishment and well-being when it is OVER! So glad you are closing the drains chapter and welcome to the chemo ride!!!!
Sweeney: ROFLMAO!!!!!! You poor thing! We have bc, tough times, losing fur and trying to look a little good and maybe score a little flirt from young Brad Pitt and that kid puts you on blast!!!!!!!!!!!! Hysterical! Well, sadly, you gave us all a laugh!!!!
Wherria: I have no clue what precipitates your onc's interest in procrastinating on the lymph node ultrasound. Especially an ultrasound because is perfectly non-invasive as a biopsy would be. I think if I were you I would call and question why you would have to wait on an ultrasound. There is no need for you to sit in wonderment...not when I look at my explaination of benefits from my insurance company, that is! I have a lump on my leg and I have been getting wicked pains in my right thigh since surgery. If I read too much I dx myself for bone mets. It is hard not to pay attention to the lumps, bumps and pains now b/c bc makes us hyper-aware but, be that as it may, I don't think an ultrasound would be too much to ask. Perhaps your onc might not be able to get it approved by your insurance b/c you are in chemo? Let me know what happens and it was good to hear from you today.
Sohardbnme: where did you go? Have not heard from you in days...well I never...!!!! Hope you are doing well.
Roserx: I never heard anything about cold cap etc.. it is all new to me. I am not sure, oddly enough, I would want to slow blood to my brain as chemo is designed to kill hiding "c" cells and, unfortunately, brain is the 2nd stop for bc mets, after lung cancer. Certainly, though, the technology is out there and it is there for a reason so even though I perhaps would not do it and my onc at Yale said nothing about it, it is an interesting idea and I thank you for sharing it with us.
So hard to believe this, too, shall pass...but it will!!!!!! So put on your santa hats and your ugly wigs and get ready to party because, for must of us, chemo will be history by then!!!!!!!!!! YEAH!!!!!!!!
Your FEARLESS Leader!
the name convinces me! right....!
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calamtykel - I'm so sorry you are having a rough time of it. I had my first round of A/C on the 5th. Had Nuelasta shot the following day ( Friday ). Took Claritin to avoid the bone pain. Don't know if I would have gotten any pain but I did not so will be taking that again each time. As for the chemo itself, I started to feel ok by about Day 6 ( Wed ). Husband watched our 1 yr old over the weekend and I managed to muddle through on my own for the first part of the week. By about Wed/Thur, Day 6/7, I was starting to pull back out of the doom/gloom and feeling like OK, I managed to weather the first storm ok. It does get better. I still have lose stools, but that is all re: SE going into my second round tomorrow. I do hope you feel better faster than I. Take care.
Michelle (42)
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Mlv2356: Why is it that claritin relieves Neulasta pain? I was just wondering because I have read it a number of times now. I have my "informational" meeting on Monday w/my onc's nurse to answer all questions and give me all the info. I am going to ask about Claritin at that time as well. Just wondering, though, because, to be honest, nothing scares me as much as bone pains from the Neulasta shot! I am sorry to say, but it is true. Even at 40, I don't feel like I did when I was 20 when I get up in the morning and add Neulasta pain and voila, I am now 80!!!!!!
Liz
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Question for the group. How many of you are on Dexamethasone? I am presribed to take 2 today, 2 in the AM tomorrow, more by IV drip during tx and then 2 more on Fri AM. I know it is a steriod that wires you but that is all I know. It was suggested by another cancer patient to eliminate this altogether but is accounts for a hugh part of the fatigue in post tx because you come crashing down once you stop taking it on say Sat and Sun. Thoughts?? Thanks.
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