August 2010...anyone starting chemo besides me?!
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Texas, you look great!
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Texas--you look great. I was thinking of taking my pic soon so I can compare my hair growth over time.
I agree with what was said before, I am definitely like to be in control and this cancer thing--regardless of the type of cancer--takes the control away from you. That is the worst thing about it--that and waiting to hear results!
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Omaz - Thank you for explaining the graph. I went to cancermath and I was totally confused by the graphs. I'm not a math person, so I need it broken down like that. Thanks!
Re: Worry - I don't find myself worrying about cancer anymore. I think that having had Type I Diabetes for 33 years has helped me in this regard. I've been facing my own mortality for most of my life, and basically doing what needs to be done to keep myself alive. I was shocked and horrified by the diagnosis, but once I was being treated it felt a lot like the way I take care of my Diabetes - one step in front of the other.
On the other hand, I have started to worry more about the people around me. I think my worst nightmare is losing someone I love. I have always had this worry because I lost several people when I was in college. Within a 4 month span, 4 people I was close to died. I was 21 years old. As bad as the cancer was, it still wasn't has hard emotionally as that period of time. So, now as I am recovering from the physical effects of the cancer treatments, my mind starts to go to "what comes next" and it always involves losing my husband and being alone. He works out of town and has been travelling to Calgary for the past 9 months and nearly every week I freak out until I hear his voice when he calls me from Canada - or he calls me from the airport on his way home. I think the anxiety was a little less when I was in the midst of chemo because I had something else to concentrate on - namely how crappy I felt. But now, I'm improving all the time and so I go to worrying about him. This week is potentially his last week going to Calgary, there was a big shake up in the project he is working on and the client wants him to transition off the project. I should be happy that he might be home for awhile after this, and all I can think of is all those movies where the guy is just about to retire and he gets killed - just on the verge of something great happening and it all gets taken away. ACK! I hate this. I have to wait until 3:00 or so when he should land.
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Hi All,
Had my BMX with TEs on Wed, home Friday, feeling pretty good all things considered. Yes, Lizzy, chemo was worse!
It seems as though most of us are moving onto the hormonal treatment phase of things. I have been reading that for post menopausal women AIs are slightly more effective than Tomoxifen. My onc is recommending 2-3 years of Tomoxifen followed by 2-3 years of an AI. She believes it is better to build up the bones before taking something that has weakens the bones. I am curious what is being recommended to the rest of you?
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lisa so sorry you are feeling so worried about your husband. I've done that myself. I worry asbout the toll it must take on him worrying about myself and the kids. I worry that he will get sick or hurt. I try to remind myself that this is my fear talking, I've come through something very traumatic and the last few months have been very stressful. So it's made me feel that the next catastrophe might be waitng around the corner. I imagine suddenly having to think about your mortality brought those old losses up. I am sorry you had to deal with that at such a young age. Sometimes talking it out and just having someone point out to me that ther'e really nothing based in fact - dh isn't sick and seems to be coping well - helps me rein in the fears a little bit. I think it will definitely take more time and distance before I can relax.
I wish I could ressure you more, just wanted you to know you're not alone and that I think these fears will lessen as the rawness and trauma of what we've been through passes. I am finding it hard to express myself clearly lately - definitely in a cognitive fog so hope this makes sense. But last chemo done so hopefully will replenish those brain cells.
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I feel less worried about it coming back now that I am getting through radiation. I have done everything I can to make sure I got rid of it, what happens in the future has always been out of my hands. I thank God for every day he has given me. Both of my parents died from this disease(not breast cancer, but cancer) my father died at 39, I was 10 and remember it like it was yesterday. He found out the day after Thanksgiving and died right before X-mas. I never really worried about getting cancer, I thought my sister worried about it enough for both of us. I feel like I'm ready to put the worst of it behind me and enjoy the rest of my life because you just never know.
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Yes, Each day, special.
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That is the gift that breast cancer has given me...the realization that each and every day is special and needs to be savored and appreciated!
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Omaz thanks for explaining. I'm so mentally handicapped when it comes to stuff like that. I too, wish they gave recurrence curves - such as, did those women all die from the "original" BC that had already produced scanable mets? Or did something "new" (unseen before) crop up three or four years later.....I think they should break it down a little better!~ I asked my oncologlist how women suddenly present with mets 15 years after the original cancer and she said it has something to do with "stem cells". I read that chemo doesn't kill "stem cells" so I'm totally confused as to how and why cancer comes back. I hope I'm not bringing anybody down - I'm just trying to understand as much as I can about all of this.
I know we can't live our lives by graphs and charts, etc., so I don't think we should be looking "too" much at them but I find myself there every so often. The one I did was the therapy calculator since at least that breaks it down a little bit more.
Lisa- I think we are all prone to dwelling on our darker thoughts during this time because basically something we thought could never happen to "us" has broken into our world. So we think...if this could happen ...then why not something else horrible? I worry about my husband all the time. He does not take care of his health and it is scary to me.
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BTW Yea for hair!!! So many are getting hair again and it a little exciting! I can feel it but it is hard to see, I think it is see through. I wonder if shaving it til it comes in darker would help? I have a cosmetology license's, but they never taught us much about hair loss from chemo. There are good shampoos and vits.for hair growth and scalp massage is also good for stimulating hair growth.
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I'm so glad everyone understands. I think by writing out what I was feeling helped a lot. I realized as I wrote how illogical I was being. Thanks for listening and responding, y'all!
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Thanks all- i actually thought i had some good hair growth til i saw Omaz's pic! I know it will eventually pic up as the chemo leaves my body...
Lisa- I foind myself worrying about my husband a lot too- when he worked for Phoenix PD it was hard because we'd hear of a shooting that involved a cop and until i heard from him i was sick with worry... My brother in law is also a cop and was shot so i know it can happen.
But with us living in a smaller community where that sort of thing is much more rare i am putting those worries to ease. ALthough to be honest my husband wants to get out of his line of work just so its more stable for our children (2 parents at risk for dying young or getting seriusly injured is a bit much) Yeha he was in an accident a few weeks ago (drunk driver slammed into his patrol car) just some bruising and stiffness, he went to hospital to be checked out, came home and slept then went to work the next day! CRAZY!
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Hair - I am really thinking the cold cap must have helped my hair come in.0
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Oh you used a cold cap? I've heard some people hardly lose their hair with that- also something about icing their hands and feet help stop the nuropathy there too- i never did try it
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funny- thought i'd share:
Recession is when your neighbor loses her job. Depression is when you lose yours. And recovery is when Obama loses his!!
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Texas- I did use them but with the first infusion we didn't keep my head cold enough so I still lost a lot of hair, I would say about 90% maybe? It would just come out if I pulled on it little bit by little bit. I never shaved my head so some of what you see is my original hair now cut short. I also iced my fingers and toes and haven't had any nail issues (though I may not have anyway).0
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Good afternoon chemosabes and radicals-
I hope you all are having a nice day.
Sptmm: you make some very good points especially about "slow down" vs. "the end." It is absolutely true that all we can expect is a slow down with this process. I totally identify with you and the nothing-bad-ever-happens-to-me theory because the last time I was in the hospital I was 17 years old getting a tonsillectomy. In regards to the safety net, if you think about it, we went on for a long time thinking we had it and we did not as bc already set up camp in our bodies. If we could only recapture the confidence we had while bc was growing and we did not know we had it yet and put that to use now when, for all intents and purposes, we *are* more bc free than we were then! It is so odd how we can have such a sense of confidence when our bodies were being undermined by bc and now that we have gone through the processes of medically evicting it, we are more scared than ever!!! I wish I knew the answer!
Texas: I have no appetite AND a weak stomach so I had never seen Nick and Norah's Infinite Playlist. By the time I read your post the toilet scene had already occurred! It was sooo gross! I could not change the channel fast enough....yuck!
It would be great if your husband could get out of his line of work. Perhaps working security? A friend of mine went from local PD to state PD to working executive detail in Washington. There is a story behind the State to Washington transition but there are a lot of private security jobs. I hope he can figure out a safe segue.
Your hair looks good. Just like mine. I am getting worried because I have like 2" growing over my ears and the rest is lagging....a startlingly attractive look I might add!
Bdavis: thanks for stopping by. You are correct in time will help us deal with this more in stride. When I think I have been on the planet for 40 years and had a "girl interrupted" moment with a bc battle that looks like it is going to take 1 ½ years to complete the largest parts of, it is really just 1 ½ years of the 40 I have been here. In time I hope I am not so anxious about it and can deal better.
Ginger: I feel about my phones the way you do about your computer. I just learn it really well and it breaks, becomes obsolete and thus time for a new one. I have a netbook that is only 6 months old and is doing the blue-screen-of-death too much. Not happy!
Omaz: thanks so much for the tutorial! I really appreciate it. I look at those graphs and I understand them but I don't look that often because they scare me! Especially since 1 in 7 women are being dxd w/bc, my new thing is whenever I am sitting in a group of women, I count 14 and think I am 1, who is the other. I get scared of the numbers! I really appreciate you taking the time to break that information down. It not only gives a greater understanding but also gives hope. Also, if I forgot to tell you I am jealous because A) your hair looks great and
it looks WARM where you are! Lisasinglem: bc, or any cancer dx, I think tosses us into a negative tributary relative to expecting the worst. I think that will abate over time but with the catastrophic loss in college, something like that I just don't think goes away. It, too, lessens over time but the sting of the experience remains. I know, I lost my boyfriend and countless others in 9/11 not to mention I should be dead as I was supposed to be there that day. It is really difficult. Someday we won't expect the worst but will look forward. I think making plans and having things to look forward to is imperative at this point for us all. Plan a vaca with your husband...go somewhere great and romantic. Have things to look forward to.
Elizabeth27: I am so glad everything went well. Good news! I told you....it is a walk in the park compared to chemo!
IowaSue: what a traumatic experience. You were only 10 and he lived less than 1 month...geez...my heart goes out to you. That is so rough. Even though my dad died when I was 29 of lung cancer, I *never* worried about getting cancer. I guess it is just as well that I did not....why waste time worrying about things that have not happened? I hope we all find some peace with this dx over this next year.
I have actually been awake, shoveling, doing dishes and cooking most of the afternoon...a big day for sleepy, indeed! Surely a nap is only minutes away!
I hope you all have a good night-0 -
Texas, I didn't mean interesting about your hair! Which of course is interesting but I thought you were talking about something else.
I just saw your link and your hair is growing really great! Mine is still at the point where you need to be looking for it and stand sidways at just the right angle to see it. My eyebrows are coming back but brown, grey and white. Previously they were all white!
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Hi All,
I used Penguin Cold Caps throughout my chemo. (I had six sessions of taxotere and carboplatin, plus herceptin). I lost all my body hair but have a completely full head of hair on my head. So, the Penguin Cold Caps definitely work. My hair is thinner than it was before the start of chemo, but not so anyone other than I would notice. If you're interested in learning more about the caps, Google:
"Penguin Cold Caps"
And also "Good Morning America Cold Caps" (they did an excellent story on the cold caps)
And also,"Rapunzel Project"
There's also a very active BreastCancer.org discussion group called "Cold Cap Users Past and Present, to Save Hair" : http://community.breastcancer.org/forum/6/topic/735873?page=59#post_2169346
Please do spread the word that the cold caps work so that others who would like to keep their hair during chemo know that it's possible. It's a cumbersome process, but was definitely worth it to me.
All the best,
Katherine
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JoyKK - I think the penguin cold caps also fit better than the elastogel caps that I used.0
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Re: worry about family---Once I was diagnosed, it made us take more notice of getting our will updated and making sure that we have our kids taken care of just incase. My husband is healthy--but so was I before bc!!
I have my first radiation tomorrow--have that same nervous feeling that I had before my first chemo--fear of the unknown I guess. Hoping that radiation will go by smoothly--countdown begins!
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Rachel - We go together for first rads treatment tomorrow.0
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rachel5738- radiation is more of a pain in the hinney than anything else. I had fatigue the 1st wk but I also had a cold so it could have been that. I am half done with rads. and haven't had much skin irritation. I use the cream they gave me at the RO office like 5 xs a day lol trying to keep the red soreness aways so my skin looks good when I go on vacation to Fl Jan. 23rd.
Good luck with Rads.I hope you have very little se.
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1 radiation down (24 more to go then 5 boosters). Went well--people were great. The setup part take a little while--but once the machine starts with the radiation--was pretty fast. It was a little nerve-racking--fear of the unknown. Techs told me to use the cream as much as I can in the day until I am sick of it! Unfortunately, my appts this week are a little all over the place which is OK for a seminar that I am starting on Wed (called Healing Journey-helping to heal yourself through cancer---i.e. going forward etc). You can tell them if you need appts changed so schedule works for me. More of a hassle going to hosp everyday, parking etc.
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Cal, Rachel, Lizzy: It is amazing the different info we get from our docs! I was told by my onc that if I chose just one treatment (tamoxifen, chemo or radiation), to chose to do the tamoxifen, that with ER/PR+ cancer, the tamox would offer me the largest percentage benefit (with my stage, grade, etc.) He also told me the reason for 5 years is because the drug becomes less effective over time, so 5 years is as long as it offers significant protection against recurrence.
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Lady - that's interesting. Have you started the tam yet?0
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Good day chemosabes and radicals:
Rachel: I get such mixed stories about Canadian healthcare. The VNA was just here and she is from Montreal. She said her sister had bc 5 years ago and was wait-listed for rads and then had to go to a place in Maine to get rads? I told her how I talk to you, Sweeney and my friend in the states who has a brother in Toronto who has prostate cancer and you all seem to be having a fine time of it. My friend's brother reports how some of the txs he gets are technologically advanced compared to the US. The VNA also said her sister works for All State. Does this make sense to you? I found it to be a strange story....very strange based on the people I have spoken to. In any case, if you have a minute to respond, weigh-in please!
Ladyinbama: there is soooo much information that is completely incongruous across the board. We all come back to this board with all different info and what still surprises me is the Claritin/Zyrtec mystery! My docs will not confirm or deny it's validity but we, the patients, swear by it!?!?! Also how do I know what "grade" my cancer is? I just found my path report. Is that the "NUC" number?
As for tamoxifen, I have not even had the discussion with my doc yet because I am so far behind now. Lord only knows when I will finish chemo and then I am going for a second opinion on rads meanwhile this wound won't heal until late March. What a long, twisty path I am on!
Well, this week I go to the PS for wound irrigation! Gross! I am seriously starting to think I will be happy joining the "AA" club!!!!!!! These TEs and recon are proving to be a P-I-T-A!
I hope you are all having a lovely day-
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Rachel- that group sounds like a nice, cathartic experience. I hope you enjoy it. Let me know how it goes...perhaps you will instill in me the confidence to go! I just don't go to a lot of these "groups" because I find people are really depressed about having C and I am such a sponge when it comes to others emotions, it will totally drag me down. In any case, let me know how you like it.0
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Lizzy: My grade was determined using the "Bloom Richardson" scale, so on my path report, it's under a section labeled that.
Omaz: I was supposed to go to the onc this morning for my first followup since finishing chemo. But, we woke up to 6 inches of snow and a shut down city this morning! At todays appt. I was expecting to discuss tamox with him plus get the OK to go ahead and schedule the second half of my reconstructive surgery. My doctor is sooooo busy. It is no telling when I'll be able to see him if they are trying to rework a whole day of his appointments! So, no, I haven't started Tamox yet but expect to soon. Like some others said, he said tamox for a year or so then they'd do some sort of blood work and probably move me on to an AI if it was confirmed I was totally into menopause.
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Hi all -
still waiting on the u/s results for my node. I'm not doing so well mentally and emotionally. I have a permanent knot in my stomach now - it feels like I felt at the beginning when I was first diagnosed...........
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