March 2011 chemo-lounge
Comments
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lily: thank you for your insight. It really makes sense to me, hearing it from your perspective; I appreciate your insight. I hope going back to the chemo isn't too terrible for you.
stilts: So glad you are getting hair! Mine is so curly, too. It is growing very slowly, in general, and it doesn't seem to get longer, it just curls more tightly in on itself.
fluff: so great that you are getting to be in the trial! I hope it works wonderfully.
maria: good to see you here. I think about where I was a year ago, lately, and I am so glad to be a year away from that. Not just the chemo, but where I am in my head...a much better place, accepting that life just doesn't have any guarantees.
penny: I'm glad you have touched down in Australia! My DH would not have survived traveling for that long. He would rather chew off his own arm than be in 'travel mode' for 38 hours. I would have a hard time with all that. I hope New Orleans and Las Vegas were wonderful.
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Wow! The look of the boards changed completely on my computer. Not sure I like the new style yet!
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Lily-I appreciate your post. It really made me think.
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Hi girls,
I've been "off" the boards for about 10 days-yikes, a new look here! Doyou all like it?
Let's see, a year ago I still had two chemo treatments left, but it was almost the end of the school year. This year, only 9 days left of school, lots of hair (have had 4 hair cuts since August!) but I'm keeping it short(er) because the curls don't work with longer hair. It's not kinky curly anymore, but works better for now at a shorter length. I guess after a year I got used to the quick wash 'n wear look!
I go Friday for a six-month mammo and to see the BS. Then next week will see the RO. Am still seeing all 3 docs every 3 months. Not convinced of need for all of them, but a little nervous not to. RO and MO say mammo isn't necessary every 6 months, but RO says it is. Being TN, I think I want to stay on top of things. I think. I do feel like I stress before each appointment. Maybe it would be good to dump at least one of these guys-yes? ACK.
I am still going to therapy for LE after six months. Am glad it is mild, but it is aggrevating. I go every Friday and miss 2 hours of school every week with travel and appt time. Got a compression bra and cami this week-ick! Cami isn't bad; bra feels like a vice around my chest. Doesn't work for school (no shirt covers it up!) but I will be good in two weeks when I can be more casual.
I still think about BC a lot, but not with the fear and dread of a year ago. I've weaned off the Ambien and the Cymbalta, but still take the Ativan at night. Somehow racing thoughts still are an issue. I've gained about 5 pounds back of the 20 I lost, darn it. I am going to be more focused and get moving once school is out. These last two weeks (9 days to be exact!) and the worst.
Glad to hear from everybody and how you are doing and how you are dealing. Just thrilled we are all still in the game
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Lily - hope you enjoy your chemo free month, try not to think about starting again for the moment.
Kristy - I see all of mine, ONC, RO and BS but they stage it so its one of them every 3 months. The LE does not seem to have got worse after the flight, but I am seeing the consultant again next week.
Maria - good to hear you are finished recon - I am sure it was all worth it. its lovely to hear from you - you are always so positive
This time last year I was still in the thick of it, hard to remember how hideous it was sometimes, I have a friend going thru it now who has had to give up and go straight onto rads as she was just too sick with infections for them to carry on. How well did we all do to finish it!
We had a ball in New Orleans, its an amazing place, so much character - and the Music awesome!!!! I love America - people there have always been lovely to us. Its easy for the rest of the world to criticize sometimes, but with all the economic problems the U.S. is still a shining light in a very screwed up world.
I have picked up a virus on the flight and so don't feel very well at the moment - bizarre isn't it - my DH is also sick so I know its just a virus, but I worry if I am not feeling really well. I guess that will never go away - the upside is that, on days that I do feel well I LOVE LIFE.
Hugs to you all
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Hello Ladies,
Wow a new look to the board, it's been a while since i've been on...at first i thought it was my computer, then i realized it was a new look to the board..Kristy, I don't know if i like the new look either, however we have all gotten accustom to changes over the past year. I sure am in a better place than i was a year ago and i give thanks to God everyday.
Lily - I wish you all the best when you start chemo again, but in the mean time enjoy your time away from the chemo lounge.
HAPPY MOTHER'S DAY LADIES !!!!
My son and his cousins are cooking dinner for my two sisters and me today....yummy..lol..
I think of you all OFTEN
((((HUGS))))
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I went back to the neurologist for the neuropathy in my feet because it's getting worse. He prescribed me Cymbalta. I asked and made sure it was ok to take with Tamoxifen, and he said yes. I went home and did some research and found it is not ok to take, called my Oncologist to verify, which he did. I was so pissed! I called the neurologist back who is now prescribing Lyrica, but honestly, I am really tired of all of these drugs. I am considering acupuncture. Does anyone have any experience with it?
Thanks!
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Colodisney: I tried acupuncture awhile ago (also for nausea)...it was helpful but I stopped going simply because I was tired of going to appointments !!! The acupuncturist put a machine on my feet that gave what felt like "shocks"...not painful, though...she also did an incredible foot massage. I definitely think it's worth trying. I still have some neuropathy in my feet that is worse some days than others. I have just tried something new that was suggested to me...first thing in the am, I roll a tennis ball between my foot and the floor several times...really feels good...kind of gets the circulation going. Be sure to let me know how you're doing !!!
I am happy to say my followup Calcium level came back in the normal range this week after being elevated at my last checkup
I had been taking Calcium along with a whopping dose of Vitamin D so I think that had a lot to do with the level. Vitamin D level is up to 43-finally in the normal range.Hugs to you all...
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Hi all, I've spent the last few moments catching up on all of your posts as I haven't been on the boards for quite a while. I've been trying to move on, enjoy the horses and husband. Sometimes the BC just won't let me. Headed off this morning to physical therapy for frozen shoulders. but over all I'm doing well. More later.
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Jules so glad to hear from you! I have been worried about you.
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Well, I have to say, ks, I was a little worried about myself for a while. I had such pain in my shoulder, my MO thought I might have metastasis to the bone. But after several x-rays, bone scan (which showed a "spot") and a MRI, it's determined I have frozen shoulders which may be caused by thyroid imbalance, which may be caused by radiation. And the tamoxifen/Femara pills may be aggravating the whole thing. If I can get over the side effects of treatment, I'll be fine.
I'm like a lot of you ladies. I'm ready to cut a few of my doctors loose. First to go will be my BS and RO, even though I like them both. I still have my gyno, MO, GP. Not to mention specialists for other body parts. That's enough.
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Hi Jules
It is a struggle handling the side effects of all this stuff as well as the worry. My feeling is that you need to see someone every 3 months, does not really matter which one it is - mine rotate so I see each of them about once a year at 3 monthly intervals .
You could just sort it with the one you have most faith in.
I saw my lymphedoema lady yesterday and arm has not got bigger which is good.
I guess the key is to say - what happens will happen, I am buggered if I am going to let it ruin today. Easier said than done though. I manage most of the time but still get the horrors sometimes.
(I notice the horse come before the husband in your list of things to enjoy)0 -
Jules I ditched my RO. I had an appt this week and just felt like it was a waste of time and money. I see my BS and MO every 3 months, so really feel no need for him.
I love my BS so don't wanna ditch him quite yet
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Jules, so wonderful to hear from you! Glad things are not cancer related. I hope you'll get rid of all those nasty SE's though.
To all, have a wonderful long weekend! I can't believe summer is here. Heading down the shore this weekend, can't wait!
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Hi gang - I've been disconnected - so sorry! But I love to hear from each one of you.
Lily - so glad you gave yourself a month off. I'll bet your garden is looking gorgeous! Keep up the great efforts. You are fantastic and inspirational.
Colodisney - I'm attending a neuropathy workshop this Thurs evening given by Living Beyond Breast Cancer. I'm happy to report back what I hear. I don't have much right now (I'm taking Metanx which is a multi B vitamin that's only by Rx) but I like to be prepared...
My update is that my ps has encouraged me to go to another ps that does free flap surgery for a consult. I have TEs but I have pain on the radiated side and the "good" side seems to have a seal leak so it deflates soon after each fill. Not sure yet what I'll do. I consulted with Kay's ps and she's got an awesome rep. I really liked the idea of only having a minor exchange left - on the other hand, if I can have a more involved surgery and then be done with it, that has appeal. I welcome any comments. Happy long weekend to everyone in the US. Happy summer to all!
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silla-read through the TE trouble thread, at least towards the end. I believe there is one person on there with the same issue right now. Not sure if what you need will be there, but it has great info.
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Thx fluff! I will check it out I've also asked for access to the photo gallery through timtam (nowheregirl). Think that will help me get my head around things..
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Silia-I'd love to hear what you learn at the neuropathy workshop! I did my second accupunture treatment yesterday and I feel good. I am trying to stay optimistic that it will get better.
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Been a while so thought I would check in. Just returned from a fab Fla vac with 5 of my high school buddies. We have been together for 45 years-some of them even longer. WE floated in our pool at least 6 hrs a day and never once ran out of things to talk about. I am as brown as a nut-figure it is not likely that I will die of skin cancer so what the hell. Ate lots of fish and seafood-as a matter of fact I gained 15lbs in May after being off chemo. Everything tastes so dang good I have been shoveling it in with both hands. I was down 35lbs from the Xeloda so figure it would come off when I started back on it.
Being normal for a month has been such a treat. I hope none of you take that for granted. My strength and energy have returned-I feel like the woman I was before all this crap happened. I thought I was tolerating tx pretty well but this break made me realize how far down this has dragged me physically and mentally. I started back on pills yesterday-figure I have about 10 days before the SEs kick in. In the meantime I made full use of my good days. The yard and garden have never looked better-I got WAAAAAY carried away in the veggie garden. Thought I would have learned something from my spring efforts-but not so much... people wouldn't answer their doors because they were afraid I was there with radishes, lettuces or green onions. Guess I can sit on the front porh and throw ripe tomatoes at the cars passing by if I can;t give them away.
Big week for us HER2 folks. Pertuzumaub up for FDA approval-ruling is to be out Friday. Huge big deal-18.5 months progression free survival. Only problem is that it was trialed paired with a Taxol. I think most of us know what than means. Trial had it with a taxol and herceptin. Dont know if they would give it with another chemo like what I am on right now. Pertuzumzaub is a targeted drug-it breaks down the cancer cell so the chemo drug can get in easier and kill it. It is up for accelerated approval and they are pretty certain it will go through. Drug company claims they have plenty on hand to roll out-should be available to Oncs by July 1. Of course it is outrageously expensive so wondering if insurance companies an deny based on it's newness. Herceptin is supposed to be 12 months progression free survival and i only got 7 months out of it so hoping combiming it with the new stuff will make it work again. I am currently on Tykerb which is also a targeted drug just works different than the H. I will cocntinue on Tykerb and Xeloda til my next scan in mid july and based on the results from that we will decide what to do. Can't afford to just drop this tx and move to a nnew one. You have X amount of options available down the line so you want to stay with something as long as possible. I had mixed results in May scan but enough stayed stable to make staying on it worth the risk.
The onc docs had their big conference in Chicago last weekend and lots of good news came out from it. All the national news were talking about a "smart bomb" treatment that is doing really well in trials. If you are going to be a stage 4 now is the time-they are really making big strides. T-DM1 will probably be the next big thing. Those trials are in Stage III I think. Just thought I would throw out some educational info at you guys.
Hope everyone is having a great summer-may we all continue to heal and progress and live our lives to the fullest
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Hi, lilylady, you've been in my thoughts lately.
So happy to hear about your much needed Florida vacation!!! Does a body & mind good. Yum to all the fish & seafood. Re: your garden-sounds like you need a table at the Farmer's market to sell off your produce. I am so looking forward to the vegetables in DH's garden this year as last year was the summer from hell. Ah, just a memory now.
Seems like every time I turned on the TV or computer this past week, I was hearing or reading about the big Chicago conference and the T-DM-1 'smart bomb'. I was happy it got so much press. It is very encouraging. Very. It dares me to hope, and of course praying there's a smart bomb in the works for us her2- girls as well.
I hear you loud and clear about healing and progress and living our lives to the fullest! Well said!
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Girls,
I just learned how to create a photo strip of head shots that I took over the past year documenting my hair growth. As of June 3, 2012, it's been one year since my last chemo.
I'm going to first print a collage of me before my hair fell out, including a couple of pictures the summer before I found the lump. I found the lump on December 22, 2010 and early in 2011, I learned of the bone mets.
Chemo began February 16 and my hair started falling out around the end of February 2011 and that's when DH shaved off what was left.
I don't know that I feel the need to continue to take monthly head shots, but it was a good way for me to gauge whether or not my hair was growing, because at times I swore it wasn't. But I just kind of wanted to mark the one year mark for my hair.
Thanks, all, and have a great summer!
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Lily - You are so spot on about not taking normal days for granted. Thanks for the reminder. So glad you've maximized your "off" time and I hope your SEs are not so bad. It's a great thing that you gained some weight from all the good eating!
Divine - You are so photogenic - you glow! Your hair looks fantastic. Mine is still thin on top and it's been 10 mos. since I finished chemo - so I tend to still wear a hat a lot and when I have to show up somewhere for work, I use my wig which has been cut down so now it's a toupee with clips. It's much more comfortable than when it was a full wig.
I'm scheduled for flap surgery on June 29 so I'm in that pre-surgery mode of getting the house in order, etc. I'm nervous but figure I want to get this behind me and, God willing, 6 weeks after surgery I'll be in good shape. Wish me well. I'm really nervous about getting C-diff again since that sent me back to the hospital for an additional 5 day stay plus it malingered for weeks and weeks at home. Anyway enough about that. We've scheduled a vacation in Cape May in early September (a dangling carrot does wonders for me!)Wishing everyone health and happiness. For all of us, I'm putting Elton John's "I'm Still Standing" on the jukebox.
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Silia, thanks for the compliments & LOVE the Elton John tune!!! Crank it way up!!!
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Divine - I'm just speaking the truth!
Colodisney - so sorry I forgot to answer your question re neuropathy. The program didn't have an earthshattering insights but she did try to be comprehensive. Check out the podcast and slides at www.LBBC.org under "learning from others" and then search by putting in "understanding neuropathy". It occurred 5/31/12. It's the first link that comes up. PM me if you want to talk further or have any problem with the site. I think LBBC does a nice job with their programs.0 -
Hi Ladies! Just checking in. It's nice to see posts from you girls now and then....I miss you guys! The lounge is dead lately but I guess that means we have all moved on to a more "normal" life again which is GOOD thing! I remember back a year ago how we would check in daily as we were in the middle of the chemo crap. Glad we have moved on to bigger/better things.
Silia - keep us posted on your surgery. I will check back to see how you are doing.
Divine - loved the photos. You look great! Hope you are well.
Lily - glad you had a break. I wish I were closer...I would love some of your veggies! I only planted herbs this summer. I am enjoying the cilantro, basil, parsley, oregano and thyme though. Nothing like walking out to the patio and just picking them fresh and putting them in my food right away. Next summer I will have a veggie garden...I have an area picked out but I have to dig up some shrubs to clear the area. I will probably clear it in the fall so it will be ready for spring planting.
I am enjoying my summer with my son.....we have been hanging out at the pool a lot. He just finished soccer and we still have a few more weeks of baseball. I am enjoying the new house. I have been doing a lot of gardening....we have tons of gardens in this house with perrenials coming up all over. I am making some changes here and there as the garden has been unattended for the past 4 years. I have a huge berry patch in the back....I will be inviting neighbors over to pick berries and take them home to enjoy as there is NO WAY we can eat that many berries. I am still exercising daily - thinking of training for a half marathon. I am running 6 miles a few days a week....trying to get my time down to 60 minutes. It was at 66 minutes and now it is at 62 minutes so I am making progress slowly. I still teach aerobics once a week and I love it. My class is so fun and the ladies are super nice. I still want to volunteer to teach fitness classes for cancer patients but I can't in the summer with my son home. I am going to talk with them about doing a class in the fall if they are interested at the local cancer resource center. I also start my training soon to be a peer to peer counselor for BC patients. I am looking forward to that. I am moving on from BC as much as I can, but it will always be a part of my life and I want to give back to those that are newly diagnosed. I think it helps to talk to people that "get it" and especially those past treatment and back into a "normal" life again.
I think of you gals often....could never have gotten through chemo without you all. I am ordering a round of margaritas for all of us in the lounge.....cheers!
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Lily - I hope your SEs are manageable. Interesting to hear about the research, it really is a time when advances are being made isn't it. Love the sound of your vegie garden, I have never managed to grow stuff to eat, but then there is not really enough rain here - have to be really vigilant with watering or they all die (well mine seem to anyway). Good advice to stop thinking about this and live - I have nothing obviously wrong and yet I was so nervous last week going to my check up just in case, and they weren't even doing scans.
Silia - good luck with your surgery - make sure you rest alot afterwards and you will be good as new in 6 weeks.
Maria - always lovely to hear from you. Gosh you are doing well with the running, I still have my trainer, box and do a few weights, but thats a whole level up from what I do. Interested to hear how the peer to peer training goes. I feel similar about helping someone else through this. I have two ladies who were in the next bed to me - one for the original mx and one for the one in November, and I regularly see them and try to provide some advice. The recent lady has just stopped her chemo after 3 (too many infections and too sick to continue) and is now on Rads. What amazes me is how little information they both seem to have been told on all of this. I am sure that being able to talk to each other has left us so much better informed.
Well I now have just under 3 weeks before I am off on the Canning Stock Route - the trip that they would not let me do last year. We are well into planning mode now as we need to take food, water, fuel and any possible meds for around 2000Km and 16 days in the middle of the desert. Can't wait.
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I was smiling as soon as I had seen both Maria and Penny had posted. I miss my friends. The exercise thing isn't happening for me right now due to stupid HFS (Hand/Foot syndrome). As far as a side effects there are many worse ones to have but having messed up feet-when you have a job where you are on your feet all day-makes doing anything extra out of the question. I do get my dog a walk every day but I guess lugging crap around the yard and mowing an acre with a push mower will have to do for now.
I see my onc tomorrow. Love to visit with him. I have clipped some good articles for his "homework" this month. One very interesting one about Herceptin resistance and the other about a worldwide consensus on how to approach advanced BC. I figure he is too busy to read a lot of journals so I take him a couple of things at my monthly visit. Wether he reads them or not at least he knows I am keeping up with stuff so he better be on his toes!! I don't expect any chnages in Tx. New Her2 drug not available til July 1-and I don't sccan again til late July so probabably continue with the Xeloda and Tykerb. The new drug has to be taken with a taxol and the very thought makes me cringe!! Current tx isn't exactly getting me regression but it is allowing me to live a normal life-and keep working. Not to mention my fuzzy Q-tip head of hair!!
Penny-somehow looking forward to a long trek thru the desert ..not sure it would be for me but I remember how devastated you were when they wouldn;t let you go last year. Are you doing 4 wheelers? Do you restock food/water during the 2 weeks or is everything packaged up ahead of time. I am sure i would forget sdmething critical.
Maria, nothing I would like more than hanging at the pool and eating any kind of berries-especially in a pie, cobbler, crisp ect. Food still tasting good. Have been back on the drugs for 2 weeks-have about another week before it turns towards yuk. Funny thouhg-it is the bad things that taste bad-carbonated stuff and sweets are the worst. That's why I lost 40lbs-bad stuff tasted bad!!
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Its not surprising we miss each other - this stuff makes you kind of close doesn't it. Good luck with the onc tomorrow Lily, enjoy the next week, eat whatever you feel like.
I could use some berries too Maria - its winter so I only get frozen ones.
The trek is mostly sand tracks thru the desert. There is one aboriginal community where you can buy a bit of food but I gather their fridge is full of kangeroo tail meat and I am not sure I can face that
. We will take everything we need. There is no drinking water but there are wells put down for the cattle that used to use the stock route in around 1910. That water can be used for washing - which is a good thing otherwise imagine what we would smell like after 2 weeks! 0 -
So glad to see we are all moving on with our lives! Feels great doesn't it?
I am just enjoying summer with my family. We are planning a beach trip in July so I am looking forward to that.
Love you ladies and enjoy the summer. Penny have fun in the desert!
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Penny-Enjoy your trip! It sounds fabulous.
I am no longer taking Gabapentin for the pain in my feet caused by the Taxol. I have been seeing an accupuncturist and it has helped tremendously. I was skeptical at first but now I am convinced! I am so glad to be off the medication because it made me feel like a zombie. Now I am trying to figure out how to get to sleep at night. The Gabapentin made me tired enough so that when I started Tamoxifen it didn't keep me up at night. Now that I am not on it, the only thing I can figure that is keeping me up is the Tamoxifen. I am still wearing my lymphedema sleeve every day and wrapping it at night. It's getting so hot and humid here sometimes I just can't wear it when we are out.
Having a much better summer so far than we did last year! I think of you ladies often. I hope everyone is doing well!
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