March 2011 chemo-lounge
Comments
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Pasmith...bummer we have no male nurses at my chemo office. That exotic dance would liven thing up a bit! Ha ha! My DH would flip out though....would be funny to see that. Lucky you are not getting the flashes...they started at night but are not happening during the day too....oh joy!
Kymn: My brother is the same way. He was calling/texting a lot before and now hardly anything. It's funny that when the shock of the "big C" gets past them they all go back to their normal little lives and forget that you still have to deal with this. I don't care anymore...whatever. I have convinced myself that my expectations for my family are just too high. I guess that's because I would act differently than they do but that's because of who I am as a person. I can't expect them to think like me. I keep trying to remind myself of that but at times I do feel a bit hurt about it. Oh well........... I do hope you have a good visit with your mom there. Maybe she just doesn't know what to do and you two will talk and you will get a better feel of what she has been feeling.
Supersally: I am so glad you only have one more. That's great news! Me too - next Wed! I hope you do ok after this round. My best friend is coming next week for my last chemo...can't wait to have her there. I have been lucky to have a friend join me on every chemo with my DH and that has been the best. It has been good for both me and DH to have someone else there. I am sorry your sister has caused you stress. My sis is not that bad but she has said some things...whinning about her life a bit lately and I just want to say "are you really going to whine to me about that???". She has had a rough year...her ex husband passed from renal carcinoma last May and she has two kids. I am trying to keep that in mind but she is whining about stupid things...not that part. Oh well....life is more normal for other people than us so I have to remember they don't eat, drink, breath and live cancer like we do.
I hope all are doing well today! Just wishing everyone a SE free week. Be strong - be healthy my dear friends. Anybody got a good song for the juke box???? I so wish I could have a real, frozen stawberry margarita right now....yes, I am having another hot flash and that would help cool me off.............
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I know it is quiet here tonight, but I am up prepping for chemo #4...wish I could be sitting right next to my new buddy Kymn; we'd have fun for sure! My SIL is going with me in the morning and I will be on my own for the afternoon until DH picks me up. I'm actually looking forward to some quiet time for a few hours but will have fun with SIL too. We get along great.
I feel for you gals who don't have support from mom and/or family. My mom has been great and dad too. He even went with me to last chemo-he's 72. We get along great. My sis is 14 months younger and is a bit at a loss, but has really stepped up. She has always been shy/introverted and really looked to me with family stuff as to what to do, etc. Well, now she's had to figure it out. I think mom has probably prodded a bit but it seems sincere and she took the day off to go with me to chemo 2 and she lives 2 1/2 hours away. So that really meant a lot. My husband's family however, has been very strange. My husband's oldest brother and wife have not said one word since this all began for me. I had a post on my care page the day of my surgery Feb 3 that they were praying for me. But nothing since. Brother even came to my husband's office looking for tax info and didn't even ask about me. However, my SIL called today to tell me her son/DIL had a baby yesterday and oh...how was I doing? Hmmm...I played nice and said fine. She asked a few questions and I thanked her for calling me. Just amazing.
Anyway, some good news. I did genetic testing for BRCA1-2 and was so scared it would be positive as I am triple negative. But it came back negative. I've been weepy with relief all afternoon. So this canser is NOT hereditary-just sporadic/random. Was so worried for my sister and two daughters. They have no idea what a big deal this is, not only for me, but for them.
My jukebox selection is "SHOUT!" by Kiss.
Well, the night's begun and you want some fun
Do you think you're gonna find it, think you're gonna find it
You got to treat yourself like number one
Do you need to be reminded, need to be reminded
It doesn't matter what you do or say
Just forget the things that you've been told
We can't do it any other way
Everybody's got to rock and roll, oh, oh, oh, ooh
Shout it, shout it, shout it out loud
Shout it, shout it, shout it out loud
If you don't feel good, there's a way you could
Don't sit there broken hearted, sit there broken hearted
Call all your friends in the neighborhood
And get the party started, get the party started
Don't let 'em tell you that there's too much noise
They're too old to really understand
You'll still get rowdy with the girls and boys
'Cause it's time for you to take a stand, yeah, yeah
Shout it, shout it, shout it out loud
Shout it, shout it, shout it out loud
Shout it, shout it, shout it out loud, you've got to have a party
Shout it, shout it, shout it out loud, turn it up louder
Shout it, shout it, shout it out loud, and everybody shout it now
Shout it, shout it, shout it out loud, oh yeah
Shout it, shout it, shout it out loud, I hear it gettin' louder
Shout it, shout it, shout it out loud, and everybody shout it now
Shout it, shout it, shout it out loud, oh
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Huskerkkc, I CAN'T HEAR YOU!
lol, just a reference to the KISS song you've posted....one of those guys shouts those words at some point in this rockin' song, which always gets me on my feet!
Ok, girls, I have a question. One week after my 4th chemo treatment, I've come down with a mild cold. No fever. Runny/stuffy nose, sneezing, slight headache. No sore throat yet. I don't feel bad, just have these symptoms. Should I continue to go to work as usual? Is this something I should report to my onco? Or just take some cold medicine? This is the first time I ever had any kind of illness since beginning chemo in Feb.
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TheDevineMrsM--I'm just cleaning up the last of a cold myself. It was mainly a head cold and I had no evidence of infection (green youknowwhat, fever.) I also wondered if I needed to call in but decided that they would mainly want to know if there was an infection. There's not much to do about a plain old virus. My cold started to clear up quickly so I didn't worry about it. If it had dragged on, I probably would have called. I will make sure that I tell the onc when I see him at the next round.
When I had my first round of chemo, I had to take in all OTC and prescription drugs that I might take for the pharmacist to assess in terms of my regimen. He said no to a couple of things, but the standard decongestant that I use for sinus congestion got a pass. I only used it a couple of times at night to ensure a decent sleep.
For sure, don't let it drag on and definitely call at the first sign of infection.
mdg / supersally--I'm jealous that you girls are at the end of the road and I am only approaching the halfway point of the first stage. I won't be done the TC piece of the TCH until July and then I carry on with just the H until FEB 2012. HR2+ sucks!!! Still happy that you get to move on and stop thinking about chemo.
huskerkkc--I'm still waiting on the results of genetic testing. Hopefully I hear something in June. I don't know what I want to hear. If it's positive, it might explain how I got here. But I might succumb to the woulda-coulda-shoulda kind of thinking. Why didn't I push for testing years ago? Why didn't a dr suggest it? And it will mean I have big decisions to make. If it's negative, we just plow ahead and get through this.0 -
Hey gals about genetic testing....I met with the genetic counselor this week after filling out pages and pages of health and family history. They told me I was only about a .4% chance of testing positive for either BRCA1 or 2 based on family history and health history so they did not recommend the test. They said they recommend the test if you are at a 10% chance or greater of testing positive. Is this how it went for you or did they just do the test regardless of the pre-evaluation? I think my insurance covers it because I am only 45. I had this genetic counseling appt a the hospital where I had my surgery but my regular med onc is at another hospital. I plan to discuss it with her next week when I see her but wanted to hear what your med onc's said. A part of me wants to just do it if the insurance covers it because I just don't believe in statistics so much any more (you know only 1 in 8 women get BC and here I am.....). Can anyone share? I already had a BLMX but I wonder about the other if I do have BRCA. I also have a sister and some nieces but BRCA could also put my son at greater risk for other cancers......thoughts?
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mdg--I'm in Ontario and the govt insurance will cover the genetic testing, but they have some way to determine whether or not you qualify for the coverage. I was expecting pages of questions but there was only an interview with the genetic counsellor who reviewed my family history in considerable detail. I think she could have said no if she didn't see enough evidence to justify it. I suppose you could pay for it yourself, but you can't say, "I'm curious" and it's covered. I qualified because I have a mother who had BC and her mother had ovarian cancer. My GP put in the request, but the MO said he would have requested it too based on that information. None of us were young when diagnosed so it isn't based on age. It was also significant that I have family history on my mom's side that includes pancreatic, prostate, colon, lung/brain cancers, melanoma, and Hodgkin's lymphoma.
The stats still say that I'm likely to be negative. It's one of those tough questions: do you really want to know the answer and what can you do with the answer that's positive and productive?0 -
I guess for me it would only warrant reducing the risk of other cancers by having ovaries or uterus out. I already had BLMX and decided that without even knowing results. I just don't want to make a foolish decision. Someone has to be in the .4%, right? I am going to see what my regular med onc says about it. I also feel like now that I have BC and if I carry the gene, it creates a much greater risk for my family members so I would want them to know.
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I'd like to know because I have a 13 y.o. daughter. But I have no history of breast cancer in my family. And I have a lot of aunts and female cousins. And there is only a little cancer other than breast cancer, and all those were smokers. So I guess I wouldn't qualify to get that test. I hear it's expensive to pay for it yourself. I'm going to ask about it next time any way. The onc I'm seeing isn't the one, but there's one onc at my center who is a specialist on genetics and breast cancer and I think all the testing might go thru her. I'll see what they say, but I really don't think it was a genetic thing with me. I have an identical twin who does not have it. She just got a mammogram and the all is good report. This is the first time (and I'm 48) that I ever got something that she didn't. Lucky me.
I think my sister's gyn offered the test to her since her identical twin had breast cancer, but she didn't do it. She said I've got the port and I'm getting all kinds of blood tests any way, so she thought I'd get the test, and she wouldn't have to. I probably won't qualify since I don't have relatives with it. She might be the only one that would qualify. Or maybe my other sister, but that wouldn't tell me anything for sure.
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I got the test before surgery and chemo, and my insurance covered it. I was considered high risk due to my age of 36 and my family history.
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I'm feeling pretty good today. I think the fact that I only have ONE MORE chemo and that my folks are coming is really helping my attitude. Food has been a bit better this time, which I don't really attribute to attitude. I slept well last night, that makes a huge difference! Most likely from Emend, IV benadry. ambien, but fine by me, I'll take it.
Kymn and Huskerkkc - hope the chair is going well for you ladies today! Hang in there, you can do this. I'm so happy that BRCA came back negative for you, Husker. Got to be a huge peace of mind knowing your girls and sister are not genetically predisposed.
MDG - every doc I talked to - BS, MO, gyn/onc all told me to do BRCA test. However, my maternal grandma, maternal aunt and coisin on maternal side all have had BC so very strong family history. My sis had melanoma at age 34, she wanted BRCA testing but her insurance won't pay for it since mine was negative. I also had an uncle on maternal side with colon cancer and a male cousin who had leukemia. With the exception of the leukemia cousin, all were diagnosed over 50 and in meno for ladies. All that being said, my results were negative. My mom paid to have the BRCA test done as her mother, sister, and daughter all had and her results were negative too. It's not a final answer for me. I'm pretty committed to eating well/exercising/etc as this is my second cancer diagnosis (although cervical caused by HPV virus). My insurance covered the cost of the testing, too. I'm glad I got the test because now I know, but everyone says there may be other genes that they don't yet have a test for that may be found later and after reading about terrain in Anti-Cancer, clearly something in my family's terrain allows cancer to grow. I do wonder if I had had my ovaries out 2 years ago when I had my uterus and cervix out if I would have gotten BC. I know ER/PR are produced by other parts of the body, but would that have prevented it? No way of knowing and I can't go back, so play the hand that was dealt me.
MrsM - I would definitely call my onc. They can at least know that you have the cold. I have called about a couple of issues already and wouldn't hesitate to call again. I found his PA/nurse to be very helpful and willing to listen.You probably don't want to take any unnecessary drugs at this point (I know I don't, I have to keep a log already) but your onc might put you on an antibiotic immediately. I'd want to know what their opinion was at least. What do you really have to lose by calling them?
Pasmith - your time will come. Even though you are only halfway through your journey with this, you will get there.
I'm off to go read some more mags and watch HGTV. Walking later when a bit cooler, lovely here today!
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Thanks for bringing that up....I think I am going to ask my ONCO as well. I have a strong history of breast cancer, my MOM was diagnosed when she was 42 and battled cancer for 20 years, she died at the age of 62. I was also told that my Grandma had it and her cousins back in the Philippines. I am worried if I carry the gene and could pass it to my daughter. I just hate this cancer thing and wish that it would just stop and I would be the last person in the family to have it.........I don't want my daugther to experience this nasty disease.......
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supersally--you make a good point. I think what is known about cancer, causes, genetic connections is very small compared to what they have yet to discover. There could be dozens of other gene mutations like BRCA. They're also learning more and more about targeted therapies which make a huge difference. The chemo we're subjected to today might be viewed as primitive medicine compared to the treatments they will use in the future.
I also find myself second-guessing the ovaries. I had a hysterectomy a few years ago and the surgeon did me a favour and left the ovaries so I didn't go into instant menopause. Now I wish he'd just taken the darned things. Would it have saved me from the effects of the estrogen? Maybe not, but maybe it could have slowed the process down. But it's not productive to stress over it now.0 -
Ladies, had an uneventful day in the chair. My SIL went with me, which was nice. Got doc to agree to no more post-chemo steroids. YAY! Hope I don't regret that, but am feeling good about that decision. Also because of neuropathy issues, they cut back on the Taxol. Am hoping that is a good decision too, but am thinking it will be. Went to cell phone store and tripped on the curb onto hands and knees. Have a nice scrape on knee and expecting lovely purple bruises tomorrow. Dang. I know that was from the numbness in my toes.
I would like to add to the BRCA discussion and share the info I found and learned from the genetic counselor prior to getting results but it will take me awhile to get it together, so will try to do that Saturday. The main thing I would stress right now is that no one should do testing without first talking to a genetic counselor. Doctors-even oncologists-are by and large NOT trained to do the proper screening and counseling necessary to explain the risks/benefits, things to consider, etc.
I was talking to my husband's older sister (68 yr old-my husband is the baby in the family at 54). Told her about talking to doctor about changing meds, etc. She is a retired medical technologist. Very smart. She has had thyroid issues and gets yearly checks. They always ask her about geting a mammogram and colonoscopy. She said she always says, "I'm good. I know my body." I about screamed at her. I asked her when she last had a mammogram. The year 2000! and she has never had a colonoscopy. She is a medical professional who was married 24 years to a family practice doctor, who also had a PhD. She said she had yearly mammograms for years. I told her I did too! I was five months overdue when I found my lump at age 50 in January. I told her I should be reason enough to do it. No one should have to go through what I have. Plus, her dad had colon cancer (treated, survived, lived to age 91). I am shocked and dismayed. Good grief. I think she must be in fear and denial.
Kymn, Supersally, hope you are feeling well after your day in the chair yesterday and today. Anybody else on Friday?
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huskerkkc--My diagnosis lit a fire under my SILs, the younger of who had been canceling her mammo appointments in favour of other priorities. Mammos didn't actually help me since I found the lump myself about 15 months after a regular mammo. Still, I'm glad if my diagnosis forces others to get with the program.
Is anyone else up for The Wedding? I was up anyway. I have my hat on, such as it is. No fascinator for me!0 -
I just found a cool thing in one of the other threads. Your name on your invite to the wedding would be the following
Lady + your grandmothers first name + childhood pet name + your street name growing up
So please address me as:
Lady Cecelia Toby RedBud
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Hmmm. That makes me Lady Gudbjorg Koko Sandmere.
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I have been off the boards for w while. 3rd TCH seemed to hit a bit harder with SEs - mostly low grade nausea fatigue but manageable.
pasmithX2 - Re: your comment about HER2+ - I too am HER2+++ (ER-/PR-) and I am still trying to decide if HER2+ is now a good thing thanks to Herceptin and other new developments.
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Chrissyw--I bounce back and forth re: herceptin. I'm glad there's a targeted therapy. But the aggressive impact of Her2 scares me. Fingers crossed that herceptin works really, really well.
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Lady Maria Sasha Derby would be on my invitation...he hee! I like that title....
Where is everyone???? It's quiet in the lounge! I hope you are all busy having a fabulous weekend doing something fun!!!!
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Lady Lois Marjorie Mish Finley. Doesn't sound very "proper", does it? I included both grandmothers.
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Having a good SE free weekend TAC number 4 coming Friday so I am half way thru. I haven't worried about having the genetic testing, not much cancer in my family - I always thought a coronary would get me - dad had his first at 39.
I know the long term targeted treatments like Herceptin and Aromatase inhibitors (for post menopausal ER+ cancers) sound scary and do have side effects, but they are one of the reasons for the improvements in prognosis. A friend of mine was on the early Herceptin trials and is sure that is why she is still here and NED. I will be on aromatase inhibitors almost indefinitely after chemo then rads, they can give you bone pain apparently, but I reckon the improved prognosis is worth it. I want to see my 2 year old grandson grow to be a man.
Happy for those of you reaching the end. I feel good to be halfway.
Not good news re the reconstruction - BS says unlikely to be able to do implants after the RADS, but I am just going to wait and see.
Lady Hilda Heather Leigh (sounds very proper)
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chrissyw and paxsmith-as regards to the Her 2. Even though we have the most agggressive of the BCs I still think we are lucky to have the tageted therapies. I am trying to find a post I thought I had saved. If I do I will PM you. Someone on BC.org gave the absolute best description of Her 2 that I have ever read-and I have read A LOT. Since I am already metastatic the long term treatments available are what I hope is going to save my life. One of the things it said that I had not remembered reading anywhere else was that the reoccurence time for 3 years following DX was the most likely time-after that your chances drop way down-I think that is fantastic. Doesn't apply to me-my Onc said I will be looking over my shoulder the rest of my life and most probably will always be in treatment. But what cancer aptient isn't going to think about it the rest of their life? The more drugs they come up with the mor time it buys us while they find even better stuff.
My Onc says they have so many exciting things going on for us guys=they are throwing lots of money at it and having huge successes. I was suprised at that because only 20% get Her 2. He said once they found out how the gene works that causes it finding that things that fight it are easier. If you check out the clinical trials lists at NIH and other sites a large percentage of them are related to Her 2.
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Thanks for that info Lilylady. I'm also Her2+. I'm not sure what the +++ means, but don't think so since they had to do the fish test to determine if I was Her2 or not. Penny, thanks for the info on your friend and Her2. I like hearing things like that. Anything that helps me feel more positive about long term is good. I think someone esle said their mother had Her2 20 years ago and is still doing fine? I can't find it though. Maybe it was on another thread, but thank you to her as well.
Loved the pics of the royal wedding. Wills seems just like his mother. Love him.
My royal invitation would be addressed to: Lady Helen Maggie Wharton. Now that's a good name for a royal!
Sounds like all the side effects are down this week. That's a great thing! I get my turn in the chair on Monday. Anyone joining me?
Have a great weekend everyone!
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good morning loungettes,
second day our to chemo,starting to have the SE come wriggling in .yesterday was nice felt pretty good, a bit tired but not sick or anthing, the steriods i hate as they make me so moody, whish DH would just understand that and try and work with me instead of telling me to smarten up like there is a damn thing i could do about it, why cant they just hold us and tell us they love us and leave it at that.sheeesh men. thing aer going alright here with my mom and dad, i have them doing some good old fashion cleaning that i havent been able to get too. i see a nap in my future for sure. I am not even feeling bad that i am not out visiting right now, good for them to know exaclty what it is i am going through as this is there first visist to me since dx. Feeliing a bit hurt my DH right now as he is going out tonight with the boys and I have a feeling a strip club is in the plans and the just hurts me to the core. Nice go there dear while your bald wife with a big scare on her half booby sits at home with parents.ASS. men can be so friggin selfish then he tells me its my fault I am being selfish WFT.
has anyone else had typing troubles?? gosh my typing used to be so good now i am making mistakes all over the place. silly chemo brain.Maybe i should just start leaving all the mistakes and see who can figure out what i am saying, maybe it would be easier on us all to have our new langueage lol
Hugs too all,hope all SE are manageable.i am have way done whoo hoooo
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kymm - totally understand. bad typing on my end too. I jsut told my DH that he has not been nice...just mean. He acts like i should be up and bouncing around. Today i even got up early and took the youngest to karate so he could sleep in...then he had to make lunch for the kids and you would have thought I asked him to clean the entire house. It was just lunch! He is driving me crazy, telling me that I am crabby. I am. I do not feel good. He is an ass.
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hey - is there a "my husband is an ass" thread? LOL
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Lol Annie....that is goin to be an exciting
Thread.....though I just couldn't complain with my Hubby....0 -
OMG...Annie...Love the thread idea. I think you should start the "Husband is an Ass" thread for sure. Mine has been pretty good except sometimes I think he forgets I am going through chemo. He invited friends for dinner tonight...like I really wanted to spend the whole day cooking in the kitchen....?? My problem with him lately is that when I just want hugs/cuddles he assumes he's getting some....he is still obsessed with the boobs (yes the nasty TE's!). He said the other day out of no where "those are some gigantic boobs".....like he was commenting on the weather or something. While I am glad he is not turned off by me and my "under-reconstruction" body I am just not in the mood. The chemo is not helping with things down there (dry and uncomfortable during any "adult" activities") and throw in that I was pre-menopausal before so we have to use condoms now too which makes things further uncomfortable. Why to I have to keep explaining this to him??? I finally said "I am sorry but it hurts and feels like someone is scrapping rubberbands up inside me"...how much more direct can I be....gosh I hope that gets better. It stinks so lose so much other stuff and then "normal intimacy" too. I hope after chemo things get more comfortable. But then again, tamoxifen is right around the corner too and that certainly won't help either.......I hope this wasn't too personal but I guess we are in the "lounge" and after a few drinks don't women talk about sex too??? Anyone else not in the mood or having the same issues? I can't imagine how much he will be into the boobs when I get the real implants that are not hard as a rock......lord help me!!!!
Again men just have issues...their common sense hangs out "down there" with the balls. They don't understand. The more we do, the more they expect even if we are on chemo! How can testosterone make men so stupid?????? We could have two threads "my husband is an ass" and another one for " if my husband could read the thought bubble over my head" thread...you know the one that you would post what you are REALLY thinking about your husband or what you REALLY want to say to him but can't......now I could pour a few drinks and read those threads for hours...ha ha!
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Glad I tuned in tonight! I had chemo #3 on the 26th and feel like this time I got my ass kicked. Getting really impatient with my 7 year old, she's just being 7 and is overall a pretty easy kid. I'm going to remember this year for many reasons but one is the fact I let my daughter watch totally inappropriate TV. Mad Men, ( she knows all the character's names and understand that Don Draper is a Jerk) Justified, ( Timothy Oliphant is hot ), and Parenthood to name a few. I download off Itunes and lie in bed and my daughter and I cuddle up and watch the shoes off the computer. Ifeel like such a rotten mom. However, despite being exhausted I did take her for a two hour bike ride, played in the yard, and I cook her healthy meals. Guess I'm not all bad.
Suffering from joint pain for the first time and my poor tummy is constantly upset!
As for the "my husband is an ass" my BF is totally cluesless as to what I'm going through. Tonight he wanted me to drive an hour to attend a "smelt fest", yeah like I really want to be in a room full of cooking oil and smelly fish. He too asks why I'm so crabby. I feel like saying to him. don't know babe, maybe it is the complete and utter lack of help and support. Plus, I find my man tends to suck out and energy I may have in me.
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lilylady - my sister who is a nurse (and manages a palliatve care unit - but I don't like to think about that) spoke to one of the medics recently and he also said that this is a really exciting time for them in the treatment of cancer as they have so many new drugs coming on line and know so much more about it. I think we should ignore any stats that are out now, they are already out of date. We all have a much better prognosis.
kay-from-philly - definitely the best royal wedding name, sounds perfectly English and very aristocratic. Good luck MondayKymn, mdg, Timerdog and Annie - I sat my DH down at the beginning and told him I would be crabby as hell and probably mean to him but that it was the drugs and he had to just suck it up. I feel for you guys as mine has been amazing and I don't know how I would cope if he wasn't. Keep stressing thhat it is a known side effect that the drugs give you depression and there is NOTHING you can do about it. I was worried mine would be disappointed about the fact that I can probably not get a reconstruction so I will be boobless for the rest of my life. I said I would do the TRAM op if he really wanted me to. He would not hear of it, says he loves me however I am.
I really admire those of you coping with this with children. With adults you can explain and with no kids you can rest of you need to.
Timerdog - you are a brilliant mum if you are out bike riding and playing in the yard AND cuddling and watching movies.I have decided not to go out to big social events with lots of people - it only seems to make me miserable so I am just not going to do it. Going to stick to small stuff with family and friends.
Off to a BBQ in the park now with my kids/grandson to celebrate Aussie mothers day a week early as I won't feel like it next week.
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