August 2010...anyone starting chemo besides me?!
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Lizzie--I am now on Tamox for 2 months and haven't noticed any major side effects. I think that it is causing some aches or else it is just old age. I still have some hot flashes but not as bad. When I read your post about your aches/pains and the side pains--it is eerily similar to how I was feeling post-chemo. My left side (non bc side) was painful and of couse, my mind was jumping to worst case scenario. I went to MO and he ordered another bone scan--it was clear. My MO said that if you are bothered with anything for more than a couple of weeks--to mention it--most times it is nothing. When I asked him what could be bothering me--he just shrugged his shoulders and said--a year of surgeries, chemo and now radiation--body in flux--no estrogen can cause aches/pains. Just the gift that keeps on giving (he didn't say that but pretty much what he meant). Aarrgghh.
I am trying to get myself to gym every day even if just to walk on treadmill--hopefully it helps with how I am so achey. I feel that when I get up in the AM--I am like an 80 year old woman plus the soles of my feet hurt sometimes--which I have since learned could be neuropathy from chemo. Hmmmm.
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Good afternoon all!
On aches and pains - yeah, feel like I am 85 when I try to stand up. It seems like once I am moving all is good, but for the first couple minutes it is rough going. Not sure if it herceptin, old age, tamoxifen, or chemo related. The joy!
Wanted to share this story, kids were pesting this weekend for me to go topless. My son has been very shy about me being bald, so when he told me I didn't need a scarf, I thought, well maybe I don't. The neighbor down the street asked how the hair was coming in, showed her, she said that I didn't need the scarf. My hubby said, I think you can start going without your scarf. Had my son's birthday party with all family this weekend and they were excited to see me without the scarf. Co-workers said I look good without the scarf. Day two and feeling a little more comfortable with it. I went to pick up my son at school, rang the doorbell, and I heard a kid say, "someone's dad is here". I guess the hair itself might be there, might be growing, and might look alright.....................ON A MAN!
Have a great night all!
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Hi all,
I saw the gyn onc today. I still don't know a whole lot. He wants me to have some scans to rule out spread. Then if the scans are ok, he'll do another surgery where he takes out nodes, a layer of fat (?that's what he said) and some other stuff from down there. Then I'll have to do another round of chemo that is for OV CA. I'm trying hard not to be bummed. I know it is all good that this was found early, and hopefully before any spread; but I just finished chemo and my hair is coming back a little and I feel good ... I just dread having to go through it all again. Those of you who pray, will you pray for me and DH (Mark) please? My f/u is next Fri., 3/3, and I guess I'll have a definite plan then.
Thanks, Regina
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Prayers for healing and strength to you and your DH Regina.
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Lady - Have you sought another opinion? There may be other choices. I am truely sorry you are going through this.0
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Hi Everyone!
On Aches and Pains: Add me to the list of prematurely 100 year old women! I am definitely very rickety when I first wake up in the morning and when I get up from my desk during the day if I have been sitting down for a couple hours. Its funny, with all the working out I have been doing, I know there must be some muscle soreness, but I really can't tell what is the post chemo muscle soreness and what is workout soreness...lol.
Lady: I am soooo sorry to hear that you have to do chemo again. I can only imagine how you feel facing that again. If possible, just remember how quickly the time went the first time, it will go just as quick this time. I will definitely pray for you and your husband!! It is so unfair that you have to face this all again just when you were starting to feel better. Just remember, we are always here for you....and I personally promise to stay here on this thread to see you through chemo again, just holler and I will answer!
Debbi
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Lady--Will definitely be praying for you. Like you said, they got it early. You will get through this. When I had my rad hyst last year for cervical cancer--they removed nodes on right groin area and basically everything else.
mommichelle--Your post made me laugh--thanks. Not that I'm laughing at you but I feel exactly the same--my hair would look great on a man or a young boy--probably not by choice though.
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BamaLady I know this was not what you wanted to hear!. Sending positive thoughts your way. BTW my BS always said they would take out a fat pad and send to lab with the axilary nodes and "defat" them. Could have used a more delicate term:). We are with you here to lend support as you find out your plan. If this had to happen I am so relieved your dr caught it early. libraylil0
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Hi All! I was out of town visiting my parents for a week and I've been really busy, so it has taken me awhile to get back here. I was originally supposed to go to Brazil on Friday to visit DH, who has been working there. However, the Brazilian Consulate informed me last Friday that they needed 2 weeks to process my visa and I could not leave the week I planned. I never saw anything about that on their website, although they assured me it was there. So, I am not going to Brazil. :-( The good news is that DH is coming home early and should arrive first thing Monday morning.
LADY - I just read about your news and I want you to know that I am praying for you and wish you strength and wisdom to come through this next phase. Both my grandmothers died of ovarian cancer, so I know what an insidious disease it can be. I'm SO glad it was caught early, and I'm praying that they have taken out all of it. Sending you lots of love and strength!!!
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Ladyinbama: I will pray for you and Mark. Sometimes there is just nothing to say. I am just so sorry you have to go through chemo again. The nature of cancer dictates that I very well may be posting a similar case at some point as will many who have had other primary cancers. Just be so very grateful they found it because, and I am sure you know this, the female system cancer is very, very hard to detect and, for that reason, often proves challenging for the doctors. I am just so happy you had the ooph and they found it in that way but it is still heart breaking to have to go back through chemo again. I must tell you I truly feel for you and will be praying for your peace and that you find some comfort on the next leg of this journey. Best of luck to you, Regina.0
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Thank you all so much, you don't know how much your support has meant to me through all this and it will continue to help me get through it. I was so bummed out yesterday after seeing the doctor and all I accomplished was to be told "hurry up and wait" for tests, etc. But the sun is out and I'm going for a walk. I'm better today. Love you ladies!!!
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Lizzy- you crack me up! WHat are those sightings? Marfalights LOL (i actually learned that from king of the hill not actually living here in tx LOL)
WTH! i havent applied for the scholarships yet cuz i wanted to make sure i got into the program first, but maybe i will apply just in case- but hopefully not ALL of them are that ridiculous! Even my broke ass made over that! (well my hubby lol)
Ginger- my sis down in Oly just called me this morning saying it was snowing too!
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Michelle that is so funny!!!! Girls do look cute with short men haircuts- like the pixie type- that kid is prob over exposed to justin beiber where they think even men need longer hair!
Regina and Mark prayers sent! Its hard not being bummed but take stock in the fact that when you were first dx with BC they did all the scans and stuff and didnt find cancer anywhere else, so between then and now not much could have changed. You caught the OV CA super early!!!
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texasrose- See you on the rads thread, when do you start?
lady- Wow... sun... ENJOY!
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Good morning all:
I have officially boarded the Tamoxifen train! I learned yesterday Tamoxifen is it's generic, and most used, name. Tamoxifen Citrate (or something like that!) is the brand name. I am hoping things go well. I am going to have to watch for my hormonal reactions, of course!!!!! Whoo hoo.....let the games begin!!!! He he he!
Rachel: what your MO told you is pretty much what my APRN said yesterday as I told her I think I am getting a little berserk post-chemo thinking every pain is mets! She said that post-chemo it is very natural to feel scared and attempt to over-diagnose every little issue and that we are naturally, after going through all of the bc business, much more aware and in tune with our bodies. Yes, every ache and pain! I feel 80 as well...ugh. As for your feet, I would get one of those foot bath with the rollers in the bottom. Could not hurt and will undoubtedly feel good! My treadmill is in the basement and now my new excuse is too cold to go down there and now my new counter-excuse is you will heat up once you get moving! I have to start today. BTW, isn't estrogen good for our skin? Does this mean we are going to both LOOK and feel 80?! Thanks, bc!
Texas: Everyone, even martians, want to go to Texas! That guy was sooo funny! I never forgot his very sharp sense of humor but certainly that comment was the highlight of my interactions with him!Mommichelle: I keep telling my friend soon they can me "Louzabeth" and, of course, "Lou" would become my abbreviated name! Between chemo, no hair, the lack of estrogen and the steroids (so glad that mess is done!), I will soon be in the beginning stages of becoming a man short of the parts! We are a hot bunch! Alas I also have the dubious experience of both having no boobs and now a hole where my left one used to be! So much joy....I wonder if my "s" life will ever be even remotely normal again...
Sptmm: you hit the nail on the head, sister! I was just complaining that working out causes more aches and pains than I had before! That is so funny! It is a cruel joke from nature that the older we get, the more we need to work out and, unlike in our 20's, the body says no with the aches and pains that start as you move more! I can't tell you the enormous respect I have for those 60 y/o I see jogging now!
Lisasinglem: NO TRIP TO BRAZIL?! I was all prepared to live vicariously through you! I guess I have to go back to living through my friend's husband who is about to buy a modified, midlife crisis car = a Saab convertible! He was looking at the Solstice, however!
Lady: we are all here for you. Pour yourself into anything you enjoy and try to keep your mind as busy as possible. Also laugh as much as possible as that is medicine for the soul. Enjoy your lake house and don't think about much else.
Finally, I was looking up the side effects of tamoxifen and at this site http://www.imaginis.com/breast-health/coping-with-the-side-effects-of-tamoxifen I found this chart which compares the conditions of those of us on tamoxifen vs. women not on tamoxifen. I thought it was helpful and perhaps you all will find it the same!
Condition Incidence in women taking tamoxifen Incidence in women not taking tamoxifen
Endometrial cancer 2.29/1000 cases annually 0.92/1000 cases annually
Pulmonary embolism 0.75/1000 cases annually 0.25/1000 cases annually
Deep-vein thrombosis 1.26/1000 cases annually 0.79/1000 cases annually
Stroke 1.43/1000 cases annually 1.00/1000 cases annually
Cataract 25.41/1000 cases annually 22.51/1000 cases annually
Cataract surgery 46.62/1000 cases annually 31.43/1000 cases annuallyGood day, girls-
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Adey- i meet with the RO tomorrow and i will update y'all on my start date!
Lizzy- When do you start tamox? Or have you arleady? I have been on it a week and so far nothing to report
I get ya with every ache and pain being mets! I feel that way too! Especially if it is where i already have mets i think "they're growing again" but my last scans showed stable so i am not too too worried (just a little lol)
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Lizzie--thanks for the link...I checked it out--interesting to see the differences between not taking and taking. More reason to keep on top of regular checkups. Re: Tamoxifen--I used to work for generic pharma company and Tamoxifen was genericized years ago--my old company made it also--I would never have thought that 4 years later, I would be taking the damn thing! I am now 2 months into Tamox and haven't had any key changes--hoping the same for you and Texas!
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Hello gals! Thanks everyone for the positive thoughts as I had my re-re-excision this morning. Everything seems to have gone well and I am back home. Still feeling a little tired but more awake than I was earlier. The pathologist took a quick look at the sample during surgery and thought it looked good but they will do additional testing to make sure there were no cancer cells remaining. The surgeon said they should get full results on Friday or Monday. I will go meet my rad onc next week for an initial consult but probably won't actually be able to get started for 3 or 4 weeks, once I've healed from surgery.
Lady I'm so sorry to hear you may be having chemo again. I was really hoping that they had caught the OV CA early enough that chemo wouldn't be necessary. I agree with Debbi, I will stay on this thread as you go through additional chemo and will be here if you need me! Actually I plan to stick around on this thread regardless, I would love to keep checking in with all of you ladies as we move forward with our lives. My thoughts are with you and your DH. It is easy to forget how hard this is on them too. I was not feeling very stressed about my surgery today but I discovered afterwards that my DH was really stressed. So I will send positive healing thoughts to your DH as well as to you.
Lil I'm glad the fluid drainage went well on Monday but what that NP said to you is just horrible and insensitive. I would have wanted to punch her too. Part of what prompted me to have a lumpectomy was that I wanted to try to keep my boobs rather than get "new boobs". Suggesting that getting "new boobs" is no big deal is just insensitive about this whole process. Oh and I meant to tell you your new photo looks great!
Regarding aches & pains So far, fortunately, I haven't had any major aches or pains that made me think mets. But I am getting that stiffness, especially in my legs, every time I get up after sitting for a while or when I get up in the morning. I agree with you Michelle about it making me feel like I'm 85!
Tamoxifen My onc gave me the RX already but said to wait to take it until after rads are done. He prefers to just do one thing at a time. I saw my gyn on Monday for my annual exam and told him I'd be starting Tamox soon and he did warn me about the endometrial cancer risk. So ridicuous that trying to prevent one type of cancer puts you at risk for another. Oh, and a funny story from my gyn visit. My gyn is great and was the dr. I first went to see when I found my lump last year. He referred me for the mammo and then hasn't seen me much since then (mostly just seeing surgeon and onc) but he has called me occasionally to check in and see how things are going. I think he is in his late 30s and has very southern mannerisms (he loves to start sentences with "girl", as in "Girl, I'm so sorry you are going through this"). Anyway, he talked with me for a little bit before and after my exam about how treatment was going and my concerns about wanting to have a family in the future. Then as he was saying goodbye he gave me a hug - while I was still sitting on the examining table, naked except for that paper gown! It struck me as funny (not creepy) he is very nice but I was very aware of the fact that I was only wearing a paper gown.
OK I'm still feeling a bit zoned out from surgery so back to staring at the tv for me! I hope everyone is having a good evening.
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jsw - Glad the surgery is over and hoping for a good report!! That was funny about your gyn doc - it must seem normal to him to have women in paper gowns....that a hug didn't seem out of the ordinary!
Some good news - I saw the LE specialist today and she said my arm was in good shape. She thought this LE was limited to the radiation and when that heals up I'll be ok. She said I am still at risk and wants me to wear my sleeve (which I get tomorrow) but things look good. I think she was surprised. I did the self-massage, guess I'll keep that up.
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JSW sounds like good news from your re re excision. I know you'll want to hear it "officially" though. I'll see the RO again for CT again on Tuesday. If he is happy with the fluid being gone, I should be back on track and start the following week. My oncol also told me he would wait to start the arimidex after rads, to give my body a chance to heal. BTW are you still doing herceptin? Once every 3 weeks? libraylil0
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Tamox - I've been on it for nearly a month now, and luckily nothing to report. My hot flashes are still happening, but seem to be less frequent than on chemo. I still seem to be going back and forth between shivering cold and hot flashes which is annoying, but if that is the worst of it, I guess I can deal.
To all you northern and east coast ladies: It is supposed to SNOW in San Francisco this week. Yes SNOW...in San Francisco. WTH!!! It hasn't done that since 1976. It should be interesting to see how people deal with it here. I grew up in Minnesota, so I understand snow. I just thought I would not ever have to see it here. You all can laugh at me soon. :-)
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Chemo Part Deux: Ya'll are so sweet. I appreciate all the words of encouragement, thoughts and prayers. I was planning on keeping in touch anyway also. I'm so glad some of you will stay here too.
JSW: Glad the surgery went ok. Love the story about your gyn.
Lizzy: I try to keep laughing. A friend sent me a card the other day that said "whoever said laughter is the best medicine, has never tried morphine." I think that's my favorite card so far
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Lady: more on pics. As you will notice, I updated my avatar and what I had to do is when I located the pic on my computer, I had to save it in a different form. For instance, it was saved in bitmap and this site did not like that. I right clicked on the photo, chose "save as" from the drop down menu and then chose "jpeg." Once I saved it as a jpeg photo I was able to load it here. I hope this helps.
Avatar: this is what I looked like with here and before bc dumped me in ugly, boobless land! What happend to my life?!?!
I found a site that deals with nutrition for the spleen, liver and gallbladder post-chemo as well as a book on flushes. I am considering some Chinese herbs also. In any case, if anyone wants the link pm me. Also, after I get the book and check it out, I will let you all know if it is worth your time.
One thing I have found out for sure, through my pre-studies for nursing and through online research, is the liver is primarily what drives metabolic function. "Sluggish
metabolism due to sluggish liver and too much estrogens are
contributing factors to weight gain. When the liver fails to
eliminate estrogens efficiently, the excessive estrogens stimulate
fat cell production, usually around the lower abdominal area and
upper thigh where estrogens are more concentrated. Estrogens also
bind to sodium which retains water and leads to weight gain."What I am more concerned about, however, is the estrogen component of the liver. Apparently nature has given our liver restorative powers so I will be doing some cleansing and letting you all know how I feel after. All I know is it is an absolute travesty that the only signs of a troubled liver are poor digestion and lethargy meanwhile, when it is upset, our friend killer estrogen makes fat cells which do what? Make MORE estrogen! Great...just great! I am going to cleanse the entire kidney, liver, spleen, gallbladder group over this next month. I will post my findings here. Geez, Louise...I feel like I am becoming a nurse and a nutrititionist at the same time!
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Hi Lizzy - great pic, you look happy and fun-loving!!0
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Hi all,
We are taking the kids to Johns Hopkins today. We are driving down after lunch (5 hours in a car w/ the kids -wish us luck). I am excited because we are going to the Hypotonia clinic there which I have heard good things about. My kids both have hypotonia, or low muscle tone. We don't know the cause and as long as they are making progress and happy I know that's all that matters, but this doctor has made it his specialty so it would be nice to get a better understanding of it and how to help them The appts are early Friday and then we are going to do some fun things with them the rest of the weekend. Aidan, my 6 yo has been having a lot of potty issues (holding it in for days at atime or going in his pants) and we're doing weekly therapy with him now b/c he's regressed in some areas. I guess as I'm getting stronger things have just hit him and he feels safe unravelling a little. The good news is he spoke to the therapist about his fears about me "getting dead" and how he feels like everyone wants him to work at school and he "just wants to play" (lol). It makes me sad this has to affect him at all but I'm glad he is able to talk about things. He 's so smart in some ways, he's been lying about having bm's so we have him sit a couple of times a day. When I explained to him about the timed toileting he said "'well, why don't we put a pin in that idea" - a line from the movie Bolt we had rented the week before. I do hope this straightens out though, it's hard with all the extra clothes changing and baths etc.. and of course I worry about him being teased at school if he has accidents. Thanks for letting me vent and I hope you all have a great weekend.
Carolyn
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Good Afternoon Everyone!
Lizzy: Great pic!! I am sure you look pretty good bald and boobless too! I would be interested in the results of your detox, especially the liver detox. It is my understanding that our livers took quite a hit with the chemo, so I would definitely consider a cleanse if it works.
Ckptry: Good luck at Hopkins! I hope you guys get some useful information and answers to your questions. Sorry about Aidan's troubles. It really is hard sometimes to remember that this whole process has been hard on the kids too. And, like us, sometimes they "get through it" okay and then when everything calms down they think and realize what happened and then it hits. It is great that he has a counselor to talk it out with. And as you get stronger and things return to normalcy that will probably ease his fears. "Put a pin in that idea"--that is hysterical, I think I would have died laughing if one of my kids ever spit that line out at me!
Omaz: Great news on the LE...hopefully it goes away after the rads!
Lisa: Snow, huh?? Well, join the club. If you need any tips on dealing with it, us Northeasterners have become quite the expert on the subject!
JSW: Glad to hear everything went well with the re-excision. Hopefully that was your last surgery! I am with Omaz, the doc probably is so used to seeing women in paper gowns, it didn't even register to him...funny and awkward though!
Have a great day everyone, I am off to a soccer tournament.
Debbi
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Good day all-
I hope you are all doing well. Just a note on the liver/gallbladder flush: it can be dangerous because at the end of the 2 days you have to drink some olive oil (forget right now if it is ½ or 1 cup) and this causes the gallbladder to contract. If a person has gall stones, and most people have no idea they have them as they largely go undetected for long periods of time and have no symptoms until the situation becomes critical, the oil causing contraction can also cause a stone to get lodged and this would require immediate gallbladder removal. It is only recommended to do this under the supervision of a doctor.
Ckptry: your son should absolutely be able to play ALL THE TIME at school and they should totally lay off that work idea!!! Geez...can't a kid have some fun?!?!? It is good that he is in therapy and talking about his fears with you. That is very cathartic. I hope the hypotonia clinic is informative and helpful and that you enjoy the weekend in MD. A friend is a nurse at Johns Hopkins, it is a great hospital. I sure hope the potty issues get resolved and, you are absolutely correct in that, as you get stronger he feels safe unraveling a bit. It is a process and I am sure he will be fine soon enough.
JSW: I hope you are doing ok. Check in when you can and let us know how you are feeling. That paper gown story is wicked awkward! I have gotten so completely unaffected by nudity, my non-boobs hanging out etc... I have just become anesthetized! I guess that is good and bad but, to be honest, I feel like my clothes have been off for a year and unlike my NY days, this time it was not too much fun!!!!!!!
Rachel: I learned through my research you are doing right by your liver and spleen when you have that slice of lemon in your water. I am pretty sure you were the one who mentioned this way back when. It has very nice cleansing properties for the organs I have become very concerned with lately!
Omaz: I have other pics from my hair was dark (my natural color) also where I look even more happy and fun-loving! Thanks for the compliment.
Sptmm: I hope you have a lovely time at that soccer tournament. On the cleanse, I will keep you posted. I am going to consult with my doc before I do it because lord only knows I do not want anymore surgeries!
The innocuous takeaway from some of my research has been have sliced lemons with water and drink 8 glasses per day; use Chinese bitters once per day; do yoga in the morning to open up your lymphatic system; take goldenseal as a tea, in capsule form or as a tincture to support the lymphatic system and encourage lymphatic cleansing; and finally, and the most obvious, eat fruits and vegetables as much as possible.
I continue my researching every day and will let you all know as I find out more. We need to get this crap out of our systems and restore our organs to a state of healthfulness. Of course, the pains in my abdominal area have, in no small part, fueled my research fire!
Have a lovely evening, girls-
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Hi y'all!
I know I haven't posted for awhile. I have been reading up on everyone when I can. Between work, rads and helping with my grandson I have been a busy woman!
I started having terrible headaches approx 3 weeks ago. I have to have a CT today to make sure there is nothing going on up there. I have a feeling its from my neck as I had neck surgery 4 years ago.
I hope everyone is doing well!
Take care of YOU!!
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mmahle46 - Good luck with the CT today! Get back about the results - probably muscle tension, those headaches can be fierce and they feed on themselves - tension, headache, more tension in the muscles.0
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Thank Omaz.
It went okay other than the fact that they couldn't use my port as the iodine would clog it. They stuck my FOUR times so now I have a nice bruise on my left hand. Of course I won't know anything until Monday.
Take care!
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