March 2011 chemo-lounge
Comments
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Maxine, I know a something about anxiety. I finished with six rounds of chemo in June two years ago. I'm in my early 50s, so it did put me into menopause.
About a month later, my 48 year old brother had emergency heart bypass surgery with complications and was in a medically induced coma for awhile. In the middle of that, I was scheduled for a lumpectomy and was required to get an EKG prior to surgery. Well, that stupid test came back with some kind of abnormal reading, and after everything, it just put me over the edge! After that, I was a horrible bag of anxiety nerves thinking I had heart problems ontop of the big effing c.
The EKG thing got cleared up, I had surgery, healed well, my brother made a miraculous recovery, but still: anxiety like you wouldn't believe. So between my oncologist and the nurse practitioner at my primary care doctor, I tried maybe five different kinds antidepressants. The results: worse anxiety. I would sit on the sofa and stare and couldn't get anything done. It was awful.
With so much happening in my life all at once, it was hard to sort out what I FELT. Finally, I was able to tell the NP "I don't have depression; I am suffering from anxiety".
The NP was wonderful. She gave me a prescription for Buspar which is simply an anti-anxiety medicine. It started working the first day I took it. It gave me my life back!
She started me on a small dose, 10 mg a day, taking 5 mg in the morning and 5 in the afternoon. She told me to see what worked, and that it could be increased up to 60 mg a day if needed. Turns out, I now take 7 1/2 mg a day in the morning and that's all I need to help keep the anxiety at bay. It does not make me tired, or change my personality, and it doesn't interfer with the intimate stuff the way effexor does.
My sister and I talked about this, and she said the anxiety could possibly be from menopause. I think she's right. The body's hormones change, and I think the anxiety is a side effect of that.
Hope you don't mind my lengthy reply. At the time, I had a heart to heart talk with the NP and asked her please to not give up on me but help me find something that worked to rid me of the anxiety. There are many medicines out there to help, so, yes, please speak with your doctor. You will be so glad you did. My onc likes to say "Better living through chemistry". You are still quite young, and need to get on with living life to its fullest. Best wishes to you.
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TheDivineMrsM. I can't thank you enough for sharing. I am weeping here with relief that a) I'm not crazy and b) there may be a solution. I will call my doc tomorrow morning and try to get something to help me. Thank you so much for sharing your story and what worked for you. It really gives me hope.
I am continually surprised by how much menopause messes with so much. Hot flashes, anxiety, mood swings. It really sucks sometimes.
I have been so miserable and sobbing, and now I have hope.
thank you, thank you, thank you, my dear friend!0 -
Divine....rethinking the sexual side effects. I kept blaming it on tamoxifen.....hmmm - going to discuss with my doctor too! I am taking effexor right now and that works well for me but I want my mojo back!
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Maxine...I am just finishing weaning myself off of the low dose of Effexor. I was taking it for hot flashes, but was still having them, so thought I would see if there was a difference. I haven't noticed much so far, but getting off of it is pretty sucky. Takes a long time. I am wondering now if I have mild depression. I have been really worn out with no energy and just not into things.
Husker....forgot to mention, I love jello shots. I made them for the first time for a Super bowl party last year. did them in little football and helmet molds in all kinds of flavors. The favorite was the margerita one.
My son is having a housewarming party this weekend, and I am going to take Rummy Bears...liquored u gummy bears. Heard they are great!
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Lily - you're also on my mind. How was your May?!
Re the Effexor discussion, I'm just weaning off because I think it's hurting my hair growth on top. Hadn't even connected the dots re the sex. Very glad to realize this!
Have I said lately that I love you guys? Well I do...0 -
The first year of menopause, the hot flashes were intense. I would have them all day long. These days, they are milder and more tolerable.
One change I made that's helped is with the clothes I wear. It sounds simple, but now the fabric has to be made with cotton. It can be a cotton/poly blend. But I found that shirts, pants and sweaters made solely of polyester or rayon or acrylic trapped the heat in my body horribly. It was a slow switch, as some of my clothes that I thought looked nice on me and had such pretty colors were made of these fabrics that didn't let my body breathe.
When I shop for new clothes, the first thing I look at is what kind of fabric is it made of. I immediately pass on anything without cotton in it. I don't buy long sleeved shirts, just short sleeved ones. If I'm chilly in the air conditioning or mid-winter, I'll pull on a sweater jacket made of cotton (I have numerous colors) and wear it on and off throughtout the day.
It also makes a difference for me to wear shirts with a v-neck or scoop-neck, something that exposes some skin below the neck. Yesterday I wore a school t-shirt to work (last day of school) with a crew collar that ran right around my neck and it just trapped in the heat.
I also have only cotton sheets and a cotton blanket on my bed.
Regarding anti-depressants, yes, they can affect your sex drive. These include the SSRI meds and the SNRI meds like Zoloft, Prozac, Effexor and Cymbalta; these were some of the meds the I was prescribed in trying to find something for my anxiety.
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mdg and silia- What's strange about the sex drive is that mine really decreased during/after treatments and after starting tamox. However, about a year later, it seemed like I was back to normal (body adjusting?). The effexor had an immediate effect on me. I didn't take it long enough to figure out if it impacted the drive, but I was immediately numb. My gyn said the anti-depressants can cause both loss of sex drive AND something called "anorgasmia", something the numbness would certainly indicate. It seems like it's random who gets what side effects.
fluff- I can't figure out depression vs. anxiety. I know I am having serious anxiety issues, and sometimes I feel depressed as a result. I even threatened to go off the tamoxifen, but my DH makes me promise every day not to do it. Stage 3 and little kids = must take tamoxifen.
Divine- This is all great advice. I struggle with the short sleeves in summer because of my stupid LE sleeve. Fortunately, my office (where I consistently wear the sleeve) is kept Arctic cold, so I can at least cover the sleeve with a sweater. Cotton sheets are a MUST, along with a constant fan at night. I keep a little table-top fan (about 4" in diameter) on the side table in our living room, and it is a life-saver in summer. And thank you again for the advice, you are awesome.
Husker and fluff- So funny with the jello shots! And liquored gummy bears? Sounds great.
I second Silia's emotion (and we can put that Smokey Robinson on the jukebox). I love you guys!
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The alcoholic gummies were a big hit! I was a cool mom amongst the mid 20 year olds.
I just finished weaning myself off effexor. I've been completely clean about ten days. The last couple of days, I suddenly noticed my sex drive is back! A big difference! The down side is that while the number of hot flashes are about the same, the intensity seems to be worse. Very sweaty. But I don't think I want to go back on it again. I am going to refill it and keep a pill with me at all times just in case, lol. I had a really bad one the other day that actually caused me to have anxiety. I thought I would have to sit down to recover.
Divine...I am doing the same thing with clothes and I hate it. All the cotton stuff makes me feel like an old lady as there isnt nearly as much style to it. But the poly and other brands just stick to me if I flash.
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Fluff- Good and bad with the effexor weaning...I hope the good is better than the bad is bad! My hot flashes always begin with a feeling of anxiety, and the intensity varies. I read somewhere that there is a rush of adrenaline associated with the flash, and hence the feeling of anxiety (which would also explain some of the heart issues associated with menopause). Good idea keeping a few effexor around just in case.
So do you just soak the gummies in liquor? Sounds great!
I have an appt with my GP tomorrow and will be asking about anxiety medication. I fear she will refer me to a psych/counselor for that, but my MO wasn't willing to prescribe anything beyond effexor and felt further prescriptions should come through the psych dept. I will most definitely keep you ladies posted.
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fluffqueen, I've been able to find some reasonably priced, pretty, cotton tops at both KMart and Macys. Of course, I have to try many things on before finding one or two things that I like and think look nice.
Maxine, the nurse practitioner who helped me find the right meds mentioned that she could refer me to a psychiatrist if I felt I needed it. I was willing to go in order to find someone who could help me with the anxiety. As it turns out, she brought the subject up on the visit where she gave me the Buspar prescription and that was what helped me. If the Buspar wouldn't have worked, a visit to the psychiatrist was my next step. I view psychiatrists as specialists who deal with psych meds. I think they do more prescribing than counselling, and they have extensive knowledge in this area. I really didn't feel the need for counselling, I just needed the anxiety under control, and no amount of talking to someone was going to help that. I remember that I tried in vain listening to meditation tapes, using breathing techniques and massive amounts of prayer, but I needed the right medicine.
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Divine....thanks! I work part time for Macys and am always scouring for the cute cotton stuff. Problem is I like a lot of the INC brand and other than the tshirts, not much else has a lot of cotton. I work in the home department, so I just take a cruise through every so often to check it out.
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Fluff...how do you make Rummy Bears ?
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I am feeling pretty lucky right now - a few hot flashes but not too bad, and anxiety is under control. Cotton is pretty much a must have in OZ anyway, but silk is also really good in the heat.
Not tried rummy bears, but my kids always do alcoholic jelly , and vodka icy poles for parties!
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Stilts, it is all over pinterest if you have ann account. Here is the recipe...
gummy bears (preferably the haribo variety)
alcohol to cover ( I used green apple vodka)
Soak 5-6 hours.
i added apple juice after awhile as they were really boozy tasting, and would probably switch to malibu rum next time, for my own personal preference, however the kids thought they were amazing and want them at all parties now!
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UPDATE: I went to my GP and told her about my anxiety and asked if there was anything she could do. She prescribed for me: Buspar. I have been taking it for about 1.5 weeks now. I get conflicting information on when it is supposed to take effect. I think it must be working: my crying jags have decreased significantly, my stomach isn't in knots, and I am mostly sleeping. I am not 100% though, and I am hoping that the medicine will continue to build to full effect.
DivineMrsM- I agree, if a psych is needed, I would be more than willing to go. I can't thank you enough for sharing your experience. Like you, I thought if I just prayed more or used relaxation techniques, I could get a handle on my head, but it wasn't working. I got a call from my sister yesterday to talk about just regular stuff, and when I started prying, I learned that she is also suffering anxiety right now and is miserable. She is probably starting to enter menopause...where meds have put me...so there is definitely something to this. I can't tell you how much I have gained from the wisdom shared by you and the women on this board! If the docs would only listen to us
fluff- I hope you are feeling good off the effexor, and cheers to you for having your sex drive back! Hot flashes are awful in the summer...for a long time I have contemplated acupuncture but just haven't gotten myself there for a consult...anyone else feel like you have too many doctors in your life?
mdg and silia - Let us know what your docs say about the effexor. It seems like we all have to make some choice on which miserable side effect we can live with.
penny- I'm glad you are doing so well. I hope you're keeping up with the boxing and planning your next adventure!
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Sending lots of positive thoughts and eHugs your way. Menopause is a bitch, maybe we need to get new hats - a bit like my F*** Cancer hat but for menopause.
I have not been able to box for a few months because of a wrist problem - doctor says its nothing to do with the Arimidex, but maybe like you said they should read the forums and see all the women on the drug that have the same problem. Had a cortizone shot in it though and its getting much better- hope to be able to hit my trainer again in a month or so!
I am busy planning a 60th birthday celebration for my husband. He has been wonderfully supportive over the last few years and diserves something really special.
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Maxine, glad to hear you are getting some relief from the anxiety. I found buspar to help during the day, but it's not really an effective sleep aid for me. I still take a very mild dose 1/2 gram ativan) at night for sleeping. The doctor always gets a little cranky prescribing the ativan, says it's habit-forming--but it's what works best for me. Also, the buspar can be increased up to 60 mg a day, I believe, if needed. I take 7 1/2 mg a day but if anxiety ramps up, I'll occasionally take an extra 5 mg pill during the day and not worry about it.
Also, I try to keep busy. If I'm sitting on the sofa using the laptop or watching tv and I feel some anxiety trying to creep in, I find something to distract me, get up and move, water the houseplants or throw a load of laundry in the washer or plan dinner, ect; anything to shift my mind off the anxiety and focus on the here-and-now.
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Hello my beloved gang! It's July 4 and we're at home weeding and getting some things off the "to do" list and then will relax this evening. I keep thinking of all of you and it's causing me to tear up a bit... I would NEVER have made it through the summer of 2011 without all the support, kindness, advice, guidance that each one of you offered time and again. I honest to God cannot thank you all enough. I know we are running in various directions dealing with some fun stuff (family, vacation, etc.) and some upsetting, not-fun stuff (still more treatments, meds to relieve issues that bubble up, etc.) BUT if you happen to see this email and have a minute to respond, send us all a "shout out" and let us know how July 2013 is treating you. I'm glad I got off the Effexor though the lows I felt while weaning off it were really challenging... I just got a new lighter, thinner wig and am glad I did it. So life is good. Sending loving thoughts and big hugs to each one of you. Putting Carol King's You've Got a Friend on the jukebox. XO
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Hi Silia
I know just what you mean. The other day I read back through some old posts and lost it totally, don't think we could have managed without the group. Life is good for me at the moment and I hope it is the same for you all. It is cold and wet in Oz at the moment so this time I might borrow some of your sunshine, but I am looking after my grandsons today which is such a pleasure - I can remember thinking I might not make it to see the little one born, now I plan on seeing them grow up.
Love to you all
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Hi all....miss chatting with everyone! I saw my PS recently....for a botox shot! Decided to give myself a treat and not have a medical appointment with him. He is the greatest and so fun.
Silia, I am glad I got off Effexor also. Hot flashes are no different. The only difference I think I notice is that when I have a bad flash, I feel more anxiety than when on it. It makes me feel panicky like I am so hot I want to rip off my clothes before I explode.
It is hot here in Indianapolis but certainly not like last summer. I still stress that I am in the highest years of recurrence and my onc doesn't want to do tests, lol. I am going to decided if I want an mri (will lobby the PS to find a lump of some kind to check) or a PET scan, after my one last August (will start to do some serious begging from the onc).
I try to force myself to walk away from the boards so I will focur on other things, but I feel like you all are a little lifeline. I can't leave, lol.
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Hello dear friends-I have been MIA for quite a while. Not even lurking-just avoiding the site altogether. For the first time i have really felt like the classic TV version of a chemo patient. I have always been able to tolerate just about any drug I have been on but the daggone taxotere finally brought me to my knees. What used to be a bad day-I couldn;t do all the things I wanted to-has changed into I hope I can walk by myself to the bathroom. Had to take some time off work it got so bad. Reduced the dose with no relief. Major weight loss and so weak it is pathetic. Starting thinking dark thoughts and was so close to telling my onc I wanted to give up the PHT I was on. Majpr stomach pains that wouldn;t even allow me to straighten up. I was a whiny miserable mess.
Well I scanned last week and the decision was made for me. Progression means moving on to something new without me being the one to say uncle. Had additional scans run to try to figure out the stomach stuff but they were largely inconclusive. The scan report said they would not rule out cancer in the stomach because it had an SUV value of 6.5 (not horrible but nothing to dismiss either). Stomach is not a usual spot for BC to spread to but it isn't unheard of either=especially in Her2. My lymph nodes in the stomach area are also lighting up. Things can look like cancer if they have high metabolic activity so it could be other things like diverticulitis or an abcess. So I am doing antibiotics and steroids and getting off the Tax so maybe things will sort themselves out. Otherwise the scan wasn't all that bad. Liver still clean-that's the great news. everything else got bigger and hotter but not at an alarming rate.
So the new stuff is called Kadcyla-it was in trials when we were doing our first go round and at that time it was known as TDM1. easily tolerated by most everybody so hoping the rest of the summer and fall will be easy sailing. It is a version of Super herceptin-it got FDA approval in feb. Remember when we did our summer and we were counting down our 6 tx? I did 18 tx of Taxotere along with the Herceptin and Perjeta. I was so so lucky to get a year out of 1 drug compared to the year before when I changed drugs 3 times. For the first time in 2 years I will start growing hair-I hope!! I have even decided when it gets long enough I am going to go back to dying it.
I would like to hold onto the weight loss but I have a feeling when i get my tastebuds back it will be like fattening a hog for the county fair. I have missed food-both cooking and especially eating. Can't wait to see if a home grown tomato will taste as good as I think. It will probably take a bit to get this crap out of my system. I start the new stuff on tuesday-only 1 drug and only 90 min to run it in. PHT took almost 4 1/2 hrs.
Sorry to hear about all the menopause stuff. Mine just quit and that was it-I never did get the whole flash thing. My sis is doing it now and she is making me nuts. I am a freeze cat and she is a sweat hog so anytime we are together one of us is miserable. easier for me to wear a sweatshirt and tuen up the AC.
Also interesting about the different drugs for anxiety and or depression. I haven't ever done any of them but I was thinking about it. My problem seems to be in the opposite direction. I have become a raging bitch. I think I am saying something in a nice voice but it comes out all wrong. I seem to have no control over what comes out of my mouth. There is alittle tiny Lily floating over my head telling the butthead Lily to let it go or walk away but that isn;t mostly how it has been. It is like I am on this ragged edge and the stupidest things set me off. I am telling myself it is because I feel like crap all the time but that isn't excuse enough. I would talk about it to the onc but i have pretty much peed on everybody there but the chemo nurses.
So I am not sure what drug covers that but I may go see my GP and talk to her if it doesn;t improve. I don;t want anything that calms me because I am so tired already. I don;t think I am mad at life for my cancer or anything like that. Or maybe 6 weeks of unrelenting rain is messing with me. One thing I know is I have way too many responsibilites and can;t figure how to get rid of some of them that I know are dragging me down. I still like my job most of the time so not ready to stop that. Although recently I had lunch with a friend I hadn't seen in a while and he put a thought in my head I have been trouble getting rid of. he said cash in your 401K pay the taxes and penalties and live large while you can. I want to save that money to go to my siblings---but I swear I lay awake at night and think about it.
I am going to read back thru some older posts to catch up with the whole cast of characters because this whole post is meeeee mee mee. I have been attached to many different threads on here since joining but none of them have people who mean what you guys do to me. When i pray at night I always hope all of you stay healthy and happy. This does seem like such a well adjusted group-and diverse. Believe me some of these threads are so drama driven you would just shake your head at it. There are mean people and snarky people--there are many more nice well meaning people but when the drama queens get going and then the Mods step in and shut stuff down. You would think people with stage IV would get over the small stuff but it just ain't so in many cases.
It has finally stopped raining in Ohio so I am going to go out and start to sort out the gardens. While the rain has made things huge-that also includes the weeds. many have offered to help but most of them i would have to stand over them and point out whats what. I will be back soon after I go back and see what everybody is up to.
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Lily so glad you posted! I am glad you are moving on to another drug and hope it is much easier to tolerate.. You deserve a break sista! I am glad your post was all about you! I often think of you knowing that the rest of us have moved beyond chemo but you are still going through it. I am glad that the scans did not indicate anything else. I too have few boards I want to be a part of on here but my drinking buddies from the lounge are the best. Everyone here has been so supportive and drama free. The kindness and love that comes from this group really made a difference for me in going through chemo.
It sounds like everyone posting is doing well and life is moving along good. I love reading all the updates!
Here is my update...we are on our last day of vacation in Breckenridge and it has been fabulous! My sis and her kids visited us in Chicago a few weeks ago. My brother and his family along with my mom are coming in 2 weeks. We will finally meet our Italian daughter (exchange student) around Aug 9th! I can't wait until she arrives. I have already been shopping for her since I don't have a girl!!! Our pup Baci is 10months old already. We love her a ton. She is in Colorado with us and loved all the hiking. I wish I could post a picture of her but I don't know how to do that from an iPhone. I will have to post from my computer when I get home.
I hope each of you are having a wonderful summer and enjoying each day. Know I think of my lounge buddies ofte. Putting a quarter in the juke box and playing "We are Family" for my sisters! Hugs!!0 -
mdg, that's crazy you're putting that song on...it's been on my mind all week...even looked up the lyrics a few days ago...and posted the video to my Facebook page.....
lily, as you know, keeping you in my thoughts and prayers....God bless to all us gals who met here in the chemo lounge.
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Lily - good to hear from you - here's hoping you have a lovely summer with the new drug not giving you any grief. I am kind of with your friend, your siblings will be fine regardless, you should do what you want to do.
Maria - glad you enjoyed Breckenridge, we loved it, amazing for us to see so much snow! Our Lily is 11 months now and so much energy but a lovely nature, probably much like Baci. They are like teenagers aren't they.
Fluff - I have no tests either, but frankly no-one seems to do them,and I think life is so much better without the stress of them. I will have them if I get symptoms and try not to think about it otherwise.
Strangely I don't see coming back to this group as dwelling on the past - its just keeping up with a lovely group of friends.
Lovel quote from Johnny Depp I saw today
"Dream like you are going to live forever, Live like you are going to die today"probably makes more sense to us ladies than to most.
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Lily- It is wonderful to hear from you, and I indeed want to hear all about you. I am so sorry the taxol took so much out of you, what a miserable experience. In terms of your mood, the relentless rain and lack of summer sun is reason enough to feel bitchy. (I love the image of little lily flying over your head encouraging you to be nice) I, too, have recently felt overwhelmed by responsibility, and I have really been trying to slough some of the stuff that I can. It's gonna piss off some people, but I just don't have time for that now because it's making me crazy. Definitely talk to your GP to see if there is anything to help your mood. I hope your taste is back enough to enjoy some wonderful summer tomatoes...that's a great place to start. I'm kind of with your friend and Penny: if there is something you want to do that costs money, go for it. You've earned it, you should enjoy it.
Penny: I love that quote from Johnny Depp. A lot of music my kids listen to is about living like there's no tomorrow or dying young, and they ask me if that's how it should be. My response has always been yes, live today like there's no tomorrow, but always hope that there is...that hopefully gets the reckless behavior out of their heads
Maria- I'm so glad you are having a great vacation and that you will soon have your Italian daughter. What a great thing to do! I would love to see some photos of the growing puppy...
You guys are a great bunch of friends, and I second the idea that the positive energy is what keeps us together!
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Here is a picture of my almost grown up Baci! This was taken on a hike in CO last week. She weighs about 30 lbs now.
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Oh girls,
I am 3 days post tx from my new drug Kadcyla and life is good. No SEs so far-hope the hit isn't still coming but so far so good. This is supposed to be easy-and the idea of having the rest of the summer and early fall feeling human makes me giddy!!
We will be scanning earlier probably-especially if the stomach pain doesn't solve itself. They have ruled out diverticulitis or abcess which leaves cancer as the probable cause. Especially since the lymph nodes in the stomach are lighting up so big. Thinking is 2 tx of this new stuff might cause the stuff to recede. So for now we are trying to treat the symptoms. Ironic after all this time things finally taste normal but I don't want to eat because of how bad it messes me up.
My hair is starting to come in. Once we dropped the taxotere dose to 70% dose some started to come in but it basically has looked like a mangy dog. I kept thinking I would shave it but never did. So the bald stuff is filling in and yesterday out in the sun I saw some glints of blond hair on my legs-now that hair I haven't missed! My eye doc wants me to try some Latisse for eyelashes. i have been in twice recently because I got yard debris in my eyes and couldn't get it out myself. he said the eyelashes would really help. Did any of you ever use that? I also might try some hair growth stuff on my head. I know when it is time to move on to another drug I will pick one that keeps your hair. After this drug I have 4 things left to try. 2 cause hair loss and 2 dont. Figure i may as well keep it going as long as I can.
Since Her2 has had 2 new drugs come out in 2 years we really don't have anything new in the pipeline as far as close to marketing. of course there are trials but they are early stage trials-not really all that useful for really advanced people but if there aren't any other choices I would do it. hoping for a good long run on the Kadcyla though.
They do have some great new things for the hormone positive girls either just out or coming out. I do think that most newly dxed are still starting out with the same stuff we did though.
Maria I have never taken my dog on vac. How fun that must have been. I assume you drove? I don;t think I could take it with my hairy beast in the car for that long.
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lilylady,
I got a latisse perscription from my onc. My lashes never came back very strong after the chemo. I, too, was getting lots of debris in my eyes...I wear contact lenses, so it was annoying to say the least & that's why I asked for the latisse. Altho it took over a month to start to see some growth, I 'm glad I stuck with it, applying it every night. Goofy plasticky brushes come with it, but I purchased a lip brush to use instead, softer bristles, more accurate application...I put a drop of the latisse in the lid of the bottle, dipped the brush into it and applied it where eyelashes meet eyelid...this way one drop is enough to go on both eyes.
Now that I have a bit more lashes I rarely get crap in my eyes.
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Brilliant news on the lack of side effects Lily - hope it stays that way!
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Lily - So great that you are doing well on the new drug. You are my idol -- I really mean it. I know how Taxotere wrecked me -- and you've dealt with it much more extensively. I hope this continues and you can enjoy your summer. Please keep us posted.
Maria - Baci!! What a sweetie. Can't wait to hear about your Italian "daughter" in a couple of weeks!
It brought tears to my eyes - "We Are Family". Yes, we are. We must always remember that. Sending hugs!
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