Starting Chemo October 2009
Comments
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Dear Jo Jo,
CoQ10 is great. I take Vitamin D, Glutamine, CoQ10, WheatGrass and fresh fruit (and ginger) juices every day.
PS: It looks like the period (full stop) on your key board in not working.
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Just spoke to dh about clippering my hair he insnt happy a wants me to wait so i will if it makes it eayser on him i suppose ive got a few more days to LOOK like there is nothink wrong on the outside
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UNCLEZWIFEONTY
oh I'm sorry ,Ive never really used a computer that much before. My husband has just helped by showing me a few things on the key board ,so hopefully there is an improvement.I made a list of the things that yourve mentioned thanks
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Good evening ladies;
There have been many interesting posts today. I like the book and song ideas. My DH said we are a bunch of sick puppies.
I made it through the hair cutting today. It was not without tears and fears, but we made it through. The good part is that it was long enough to donate to "Locks of Love". That gives me great comfort. At least something good will come out of this. She said that they should be able to get at least 3 wigs from it, so can you just imagine how much hair I have. I still have stubble and I may keep it for a couple of days, but am not sure that I can deal with it. We will just wait and see.
I hope everyone has a nice restful Sunday.
Juannelle
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Dear 1L,
How nice of you think of others during this time in your own life......
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Dear Jojo,
No problems. I was not sure if your keyboard was off or something. It sure is a bit hard to read run on sentences without proper punctuation but I am sure we can all manage and get your intended message anyways :-)
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Hello Lovelies,
I've been gone for a bit. I think I just didn't want to have cancer for a few days, but I feel like I've missed everything. I'm due for my second tx next Friday and am getting queasy just thinking about it. Also, Friday (day 14 after tx) my hair started falling out in earnest and DH helped me shave it. I had cut it down to stubble after my first treatment, but it was so much harder to see myself completely bald. I just cried and cried, and I still want to cry and hide my head, even from DH. I feel like Tor Johnson in a bad 50's horror movie. Just fat and ugly. Juanelle, I completely understand how you feel.
I'm so inspired by your talk of walking for miles every day that I'm going to get a pedometer and start as soon as my ortho says my knee is strong enough. It's funny, but I feel like being hit by a van actually distracted me from the chemo SEs for a while. Now I'm noticing the fatigue again and having the anticipatory nausea again. I'm afraid that the second tx will be harder then the first.
But I missed all of you and have tried hard to catch up. Please forgive me if I miss anyone. Kimberly, welcome. We are sisters in time, since my biopsy was 8/28 and I got the results on 8/29. I am also triple-negative with clear margins and no node involvement. I'm also doing TC and hoped that maybe I was one of the few who would not lose my hair, but as I said above, I did. Michele, I love your book title! azdiva, What I good idea! I'm going to start a meds journal tomorrow. Anita, my oncologist recommended B6 to fight the neuropathy, and I'm doing the black nailpolish thing too. I found two fun ones at Sephora by OPI. One is a matte black called "What's a Tire Jack?" for my fingers and a shiny black with gold and copper glitter called "212" for my toes. They don't have formaldehyde and I'm intrigues by the idea of matte nailpolish, like a chalkboard on my fingers. MarieK and Mary NY, I think my problem with my LGFB was my age. Even though I'm 42, I was the youngest woman there by at least two decades. The women conducting the event were also significantly older than me. I may follow Mary's example and try a different one, maybe up in Chicago. I was also concerned about skin care during chemo because i started breaking out, but they wouldn't tell me anything and kept referring me back to my onco.
Am I the only one who feels like their entire life revolves around their onco? Maybe because I've seen so many doctors after the accident and they all keep sending me back to my onco for my pain issues.
Be well everyone and don't forget to "fall back" tonight!
Sido
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Well, Here I sit in the middle of the night == awake. My dog is the only one up and seems pleased to have a little company!! Today was day 4 post tx , I ate lots of little meals to keep stomach okay and I slept on and off all day. My body seems to be quite achey, I think all this laying down has done a job on my muscles. Halloween has come and gone--missed mos of it.
This hair thing ---I picked up my wig today. Can't say I love it, it is fine. I think once my hair is gone I will like it, there is so much dread with all this. I was pretty teary today, don't know if it's from coming off steroids or just feeling yucky. At one point my DD just rubbed my back as I rested. it was all I really needed.
Well 3a.m. think I will have a little toast and find my bed again,,,,,,have a restful, pleasant Sunday, Jean
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Jean, you sound about the same that I was about day 4 of my treatment. Had trouble staying asleep for long periods and such. Pains and aches, mild case of the flu, so worth and so on. This is day 10 for me and each day I feel better and better. I did have a couple of emotional days in there where I cried over evereything, a movie, a facebook post, and just because I could.
Each day will be better.
Juannelle
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Dear Jean it will get better I promise. Each day you will notice improvements in sleeping and in fatigue. Hang in there!
I am suffering from heartburn despite taking pepcid AC. Ugh. And I have a cough. Where is that coming from. This is day 4 and normally one of my worst days. I dont start feeling better until day 7. Hubby gave shot last night...he did alright. The sticking isnt bad, but his retrieval could use some work.
Wishing everyone a feel good Sunday.
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start the music
...its a new dawn, a new day...
Its a new day and I am still alive. I thought getting my hair cut would just kill me, but I was wrong again. What doesn't kill me will make me stronger.
Juannelle
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joanneasiata, hope you are having a great day down under. I am like you on feeling normal for a little while longer. I think that is what made it so hard for me to cut my hair. But I have to move on now and find something else to whine about. I sure it wont take me long to find the object of obsession.
Have a great day.
Juannelle
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you are right, It is a new day. Finally got back to sleep last night and due to daylight savings in NorthEast, gained the hour I lost. Today is day 5 tx, feel less foggyheaded, even took an early shower. I will take today slowly, see if I get stronger as it goes.
Jaunelle, thanks for your insight, I seem to right behind you on this road of se's. Scooby, for heartburn I have been using Tums in between pepcidac.
enjoy your day, Jean
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Juanelle: I'm so glad you got through the haircutting OK and it was so generous of you to donate your hair. I don't think anyone would want mine as it's been colored. But you think that your hair could be used to create three wigs is just wonderful. You were so brave to go all the way in one go.
Jean: I've been having a lot of trouble sleeping too. I too am on Day 5 and thought it was the steroids that were causing the sleep problems. Oddly the first night I was fine and slept like a baby. But I lay awake a lot of the night again last night even though yesterday was my first steroid-free day. Are/were you on Decadron too? The recommendation for me was 12mg Decadron daily Day 1-3, but the onc agreed to my taking 12mg on Day 1 and 8mg each on Day 2 and Day 3. Even with that I just felt really hyper. Like you I finally got back to sleep in the later hours and seemed to sleep soundly for an hour or two. I hope our sleep issues will resolve themselves over the next couple of days.
Sido: Welcome back! Sorry to hear that the haircutting was so difficult for you. I know I will cry buckets when that time comes for me too, and it will be soon. Yes, do try and get to another LGFB. I think the one you attended was not typical. And you should come out of the event feeling better.
Does anyone else have shoulder and neck pain/soreness? Is this likely to be from the Neulasta? My neck and shoulders are really sore to the touch.
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Mary, I had neck pain/soreness also. I don't know if it was from the Neulasta or not. They told me the Neulasta would be from big bones, thighs, lower back and ribs. When I had my neupogen, I had spasms in my lower back that felt like an army was marching through. A little pill would put them at rest. I have read where several others have had this same thing, but no one seems to know exactly what it is coming from.
Juannelle
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I remember day #4 being one of the worst -I did not have neulasta shat but pains shooting thru my femur and knees and ankles and then next day shooting through shoulders which intereferd w/ sleep and almost everythingg else. Couldn't do much but meditate my a$$ off! (sounds paradoxical but its about all I did) jean when I go back tues for next infusion I am going to get some Vicodin just for those bad days- I'll tell u if they were responsive but I am bringing DH k (whose initials r HD) and he is my pitbull. Beautiful day - it is All saints Day! Valerie
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Dear Sido, I am also doing TC, am on day 12 today and am going to have my brother shave my head today. My husband doesn't want me to because he is hoping that I will be one of the few to have it not fall out but I have heard that all TC patients lose their hair. I am actually not that stressed over it though (crazy right?), I already have pretty short hair (a little longer than a pixie cut) so hopefully I'll be able to pull off the bald look ok. My prob is going to be with the sympathetic stares from strangers and such, I hate to be the center of attention and not sure how I am going to feel about people staring at me... I am due for my 2nd tx on Nov. 11th and it makes me queasy to think about it too. I have heard that the side effects intensify with each treatment. Other ladies out there, do you know if this is true?Best, Holly
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Good morning!
Day 5 post tx #2. Feeling ok. I have to ask, when you feel ok, don't you kind of get a feeling in the back of your mind that the chemo isn't working? Maybe they forgot to put it in the bag. I am a little tired, though. And the wonderful constipation issue is in effect. I have decided to fight this head on by taking the Senekot-S, and I took Miralax last night, and I ate about 45 grapes. Plus 2 cups of coffee this morning. I will add jalapenos to the mix in a couple of hours if I don't get some resolution! Sorry for the tmi, but perhaps my anguish can help another sister in need. I'm such a giver . . .
Found a gal here in town who will do a henna tattoo on my skull. With all of the hot flashes, I just want to be able to whip the wig off if I need to. And that skull is so white I can probably signal aircraft with it.
Thinking about Mexico again next week. I really want to go, but there is a fairly large chance that I will chicken out again. I hope not. Bikers may like the bald look. Not that I have any interest in anything naughty!!
Mary - my Neulasta pain was pretty focused on my hips and lower back. I am really trying to stay on top of the Claritin in the hopes of keeping this at bay this time around. From what I understand, you can get the pain in any long bones. Some even get it in their sternum.
Juannelle and Joanne - you guys have great attitudes. I know the up and down is hard, but we will all get through this on our own terms! I love the recent news about the fact that "positive thinking" doesn't help us get any better. Just gives me - and all of us - permission to go off on anyone at any time! I have always been a positive person. This hasn't defeated me or changed me. Just live your life and don't be worried that you have to maintain a front for anyone. The only 2 who get special consideration are my kids. Everyone else better watch out! haha I love to talk like that, but I rarely ever get crazy on anyone. I just want the option!
Sido - I hope you are feeling better from the accident. You will get through this!
Onty - thank you for being so informative on the boards. I really appreciate the insight that you have on so many of these issues.
Valerie and Jean and Scooby and Marie and Shelby and Everyone! Please take care today and have a really good rest of the weekend!
Laura
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Holly -
I actually feel a little better after tx #2. My onc said a lot of the side effects from tx #1 are actually anxiety driven, and that once you get through the unknown, it seems easier.
That said, I am knocking on wood so that I haven't jinxed myself!
Laura
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Holly, I'm about to go for #4, and I think this round has been easier on me than the ones before, other than being exhausted the day after treatment. From reading what others have said, I think the "best" weeks jump all around.
And yes, Laura, since I haven't been feeling too badly, it has crossed my mind that the chemo isn't doing what it should, even though I have read specifically that isn't true.
My biggest side effect recently? Hot flashes. Anyone else having that? I was having some at night anyhow...I think foreboding of my 50th birthday coming up. But for the past week, they've come any time they feel like it, and much more consistently than before. I'm wondering if it is chemopause? I would be about due to start right about now....wondering if I'm not going to. That is an expected SE of the drug. So if it is chemopause, does anyone know how long I will have these lovely little warmups?
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Laura, I know what you mean about the constipation. If I had to pick the hardest side effect of chemo, that would be it. I also bought some glycerin suppositories, you need to only use them once a day and when the urge hits put one in and about 15 minutes later all will be over. I also ate Fiber One Cereal each morning, ate fiber muffins and put Benefiber in my drinks. It still felt like a bowling ball going through.
I have not felt like going off on anyone yet, except my DH. We were in Lowes the other day and we got into sort of a tiff and I thought the salesman was going to take off running. We finally settled down and bought what we needed, but it was a close call. This happened on the way home from my first chemo. Looking back it was probably really funny. but not to the salesman.
Hopbird, I was also having hot flashes, cold one minute and hot the next. Night sweats and all, but I have all of sudden stopped having them. Now I am 10 years older than you, so that might be a big factor. I am sorry I can not tell you how long they will last. Just layer those clothes so you have enough to take off, without embarrassing everyone.
Hollycan, have as much fun with the shave as possible. I am glad you are not stressing out about it. I thought it was going to do me in, but I have survived to live another day.
Juannelle
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I have hot flashes. Cold one minute hot the next. I am on chemopause too. Havent had period since first tx and that was 8 weeks ago. Glad for the loss of period though. My side effects have been cumulative, but that is not everyones experience. I will try the tums...thanks for the tip.
Stay strong BC ladies. We can get through this!
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Hi Guys HAPPY ALL SAINTS DAY!!!!!!
We should have a saint of our own, Wonder what her name would be?
Going to a LGFB meeting in the am and then p/u my wig but to my surprise I am kinda digging the bald look. For those of you w/ children I went as the Avatar last night (little bald kid w/ a blue arrow on his head) and all the folks around town smiled big smiles and said "u look great!" I think they even meant it, I was all smiles b/c I actually feel good until unfortunately getting whacked again on Tuesday. Oh well I'll enjoy it while it lasts Good afternoon to everyone- Valerie
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MaryNY I will definitely try a different LGFB, maybe in a bigger city if I can't get to Chicago. I already feel kind of out of place here in Peoria (except at the college where I work), so it is not really surprising that I would feel that way in this group. also, I did not have the neulasta shot (even though I was neutropenic a week after my first tx), but around day 4 tx I started getting bone pain in my hips and legs. Some basic yoga stretches helped (especially downward dog) as did walking which is why we were out when we got hit.
Holly I too had short hair beofre all this started. I was fine when my DH used the clippers to buzz me down to about 3/4". It felt a littel GI Jane with my lumpectomy and SNB scars, and I almost rocked the buzz cut instead of always using a scarf, but the totally bald is something different..I feel like this guy
Laura: I'm so glad to hear your doctor said that! I'm hoping that tx2 will be as smooth (or smoother) than tx1. I feel like I kind-of got off lucky (accident not withstanding) for the first round, and am worries about cumulative SEs. As for the constipation, I rely on grapes or Milk of Magnesia. I've also heard that dried apricots work.
Hopbird I'm getting occasional hot flashes too, but I don't think it's chemopause beause I'm still getting my period. In fact, it hasn't really stopped. After the usual five days I've been spotting for another four.
Have a SE free Sunday Lovelies!
Sido
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Hi Valerie, how about Saint Boobarella?
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We could have really great outfits with a patron saint like Boobarella!!
L
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I like Saint Boobarella! One thing - she CANNOT wear pink, I think if I see anymore pink after this past month I will throw up.
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I knew someone would come up with something good! Good job Meredith!
Reminds me of Jane Fonda in Barberella and I do believe she had some pretty bodacious curves in that flick!
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Hi Ladies
Hey sorry if i given you guys the shits with my bad punctuation and spelling , my typing skills are sooo bad i type with one finger yes that bad ,it takes me ages to say anything, my husband has showed me a few things on this key board ,so thanks for being patient with me hopefully it will improve .
And guess what day 10 now after 1 st tx and finally im feeling good,but really teary this morning ill go have a big cry and i should be ok after that
I didn't end up clipping my hair my poor husband is having a bad time with that one i think the outward appearance of cancer you know, and its starting to fall out now .
Well ladies keep up your good humor it will not only get you through this but it also helps us get through bad days as well
Joanne
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Hi Joanne, please don't sweat the typing! I've been using a keyboard for so long that I type much faster than I handwrite. Watching anyone using two fingers makes my fingers itch! I think we forget that not everyone uses a computer all day, every day <massages cramped wrists>.
Speaking of computers, how many of you went to Google right after the diagnosis? I got mine via phone, shut the office door, then gmail chatted my DH to say I was calling him (see what I mean about the constant technology use)? Then I got a call from the cancer care coordinator and got the names of a few books. ALL my bosses were out at a meeting, so I called the one who's technically my supervisor on his cell when the meeting was scheduled to end to say I was leaving work for the day and why. DH picked me up and we went to the library. It's funny, I use the internet SO much, but I knew it could be scary to just look for info on the internet. Writing about it now, it seems like a long time ago, but it's only been 2.5 months!
Anyway, back to the sci-fi marathon with DH (V, the 1983 miniseries I've never seen...zzzz). I may be popping in a LOT tonight!
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