Starting chemo July 2014
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Mags, thank you for sharing your story about your son. Lovely that he is in your life now.
Coyote, your fatigue does, indeed, sound extreme....like, really extreme. Keep an eye on that. I'm not feeling anything like that. Weird symptom did crop up though...a weird pain throughout my core (mostly back) when I move around...kind of associated with a more rapid heart rate, too. I'm worried it's some weird cardiac thing... (I think my hypochondria has been activated by chemo). If this continues, I would ask to be seen...
I've never been on a cruise and I'm not likely to (although I'm curious and cruisers seem to love the experience). I suffer from motion sickness and I'm a bit of a germophobe (I always hear about these floating Norovirus episodes on the news). I love to walk, so visiting cities is big for me. I find it fun to rent an apartment and live like the locals. Check out Vacation Rental by Owner if this interests you. (vrbo.com I think). Last summer we did this in Lyon, France. It was a wonderful experience...
I'm a sucker for the big cities (London, Paris, Rome, Venice, New York) but have stumbled upon some less likely favourites (Lyon, of course, really enjoyed some time I spent in Nashville, Atlanta). Favourite Canadian cities besides my own, which is the centre of the universe (Canadian inside joke): I love Quebec, Montreal, and especially Victoria and Vancouver (and Whistler)...just love the vibe out west. Okay...all to get our minds off of cancer...you guys are 'it'. What are your favourite cities and why?
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I'll take you up on that, Mumford! My favorite city is Assisi, Italy. I spent an afternoon there while on a European tour with high schoolers, one of whom was my niece. Assisi was not on the itinerary, but we had extra time, so we got to see it. We were told not to worry about getting lost as all roads lead to the Basilica. That turned out to be true, as everyone went their own way and no one was missing at the end. It took hundreds of pictures because I never want to forget it. Here's one:
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CoyoteNV
I saldo have low red blood cells and feel very sleepy all the time.., maybe is the lack of sleep too.
But I think your case is more extreme maybe you need to take a supplement ... Should as your MO
Hope you feel better
XO
Andy
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Mags....loved your Assisi photo! Here's me with hair, loving Rome.
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diva,
do you get the neulasta shot? I get it the day after every chemo and it goes into my bone marrow and makes more wbc's. ask you dr about it. I've had good counts so far, the only thing is I'm slightly anemic but no biggie. I know if the rbc's go too low I have to have a blood transfusion. I can't eat more iron or take it because she said it doesn't work for chemo anemia.
look on the bright side, another good week for you to enjoy!
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mumford, you look gorgeous!!!
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favorite cities, hmmm. I like any city in the Carribean! St Thomas and Grand Cayman are my favorites. I guess I should DC since I live 40 minutes away. We do have lots of awesome museums and memorials
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Pinkninja, our last cruise before the fateful one I described earlier, in December, we went to Falmouth, Jamaica, for the first time. We took a tour in a horse drawn covered buggy so I wouldn't have to walk. Our local guides were so much fun – they sang to us, the banana boat song and the Jamaica theme song and took us all around that end of the island. The locals were so friendly and we took lots of pictures.
I've only been to DC once, in 2004, DH & I were visiting my cousin in West Virginia and we went down for the day and hit the hot spots. The cherry trees were in bloom. I have lots of pictures of that too.
Never used to be much of a photographer before digital. As a graphic artist, I came to appreciate the ability to blend photography with typography and special effects. After I retired, I volunteered my services to the small church we attended then and I created slides to use to illustrate sermons. Here's one of my favorites, for a sermon on David and Goliath.
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mags, that's so cool. We've been to Falmouth, Jamaica too. I love all the islands and their culture. On one of our cruises, we went to Aruba and took a bus ride to the beach and the bus was painted all crazy colors and they played crazy music and gave us maracas to shake. It was so much fun! The sea is calling me!
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DancingDiva: transfusions are usually if the red blood cells and hemoglobin are too low. Have you been getting the neulasta injection to stimulate your bone marrow to make white blood cells? That's an option. There's also another shot, neupogen (sp?) that is used. So sorry for the delay.
I got my pre labs back today, I'm good to go for tomorrow's #3 chemo. A little more nervous for this one after having the reaction last time, even though the team got my symptoms under control quickly, it was still scary.
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Hi, Puffin. I, too, reacted on cycle 2 (exactly the same kind of reaction). For round 3, I had 50mg of benadryl and 10mg of dex by IV in advance of the Tax. They then did the taxotere infusion in a staged way (as they did for round 1). Everything was fine. Try to relax, if you can...I'm sure your team has a similar protocol, pre-infusion. It will be okay...
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Ditto to what Puffin said on the transfusions and nuepogen (sp?) shot.
Finished with my second infusion and feel Ok; however more achy straight out of chemo not sure I felt this until much later like day 3/4 the first time around. Not as amp'd up as I felt after the 1st infusion -- I was superwomen to say the least on the steroids 1st round. The Zofran headache is sitting in big time already and that didn't start until day 2 the 1st round. For achiness any suggestions -- it is flu like achiness if that makes sense.
Love the cruise discussion and love the warmer climate cruises. My favorite vacation was a two week trek through Paris, Rome and Madrid.
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Third one was today! No problems. Waiting for fruit to start tasting nasty bad for the next week or so, and hoping that's the worst of it.
My fatigue has been worse the past week or so, but my blood counts are pretty low (although not low enough to delay chemo, thank goodness) so I wonder if that could be a part of it. There's a slight possibility that I may be overdoing it, but I don't really think that's what it is. Swollen hands and feet, expanders hurting bad enough for pain pills, and leg pain from the neupogen, but after all is said and done, I almost feel guilty for doing as well as I am!
Haven't though about quitting except when I had that neutropenic fever after my first infusion and ended up in the hospital. Now I inject myself with neupogen for 14 days starting a couple of days after chemo, and that seems to help. Given that my counts were low yesterday I can't help but wonder what they would be without it!
Puffin, I had a reaction to the Tax on round 2 also, but they dumped a bag of Benadryl into me this time and no problems.
My periods have stopped. I'm cool with that, although I'm childless , I've never wanted to have kids. I love kids and I love being an auntie but... Just was never in the cards.
Anyway, here's my obligatory pre-chemo selfie with my mom
You all have a great day. Thinking of you
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jenkay, Mumford, love the photos! Beautiful both :-)
Coyote - hope you feel better soon :-/ fatigue sounds awful. Ugh.
Diva - delays are no fun, I know!! I was miserable with my 2 wk delay following infection. MO just said 'the chemo will be there when you are ready for it'...
I'll bite on vacay :-) like Mumford I am a city girl. Had great pleasure of living in Europe for years, and will always have a soft spot for Amsterdam. The canals, the coffee, the tulips...sigh. Also a big BIG fan of Bruges - for many of the same reasons (altho it defo does not qualify as a big city!). Edinburgh another seriously gorgeous place to visit. And Prague.
Since returning to the US 4 years ago, we have taken a lot of road trips - a quintessential US experience I think :-)
Oh, it must be time to plan a major vacation...so can't wait to be done with stupid cancer...
;-)
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Pinkninja - thats exactly what I was told re anemia. My red blood cell count is way down along with my energy level. I asked about B12 shots and was told no B12 because it promotes faster cell growth. The only way to go during chemo is a blood transfusion. Im pretty sure my last chemo is Sept 2nd (except for the continuation of herceptin for a year). 4-6 weeks of rads is next -I dont know if that effects red blood cells or not.
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Thanks for the advice to call MO. I will do it. I chatted with a health foodie friend today and she suggested low electrolytes might come into play. It kind of caused an Aha moment. I've been downing PowerAde Zero and snacks sprinkled with WrightSalt. Tasters are still turned off, so it is more medicine than snacks. I'll do dill pickles before bed.
Definitely not a city, but my favorite vacation was on Bali. One of my sons married his Indonesian bride there, and we went to the wedding. We lived in the DC area at the time, so it was half way around the world! It was a really long flight, but worth it because it was an unbelievably special moment and Bali is a truly magical place.
Isn't it amazing. A short time ago we were all discussing our upcoming first chemo, now some of us are rapidly approaching our last treatment.
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Coyote, sorry you are so fatigued. Today (yesterday, up on steroid and anxiety high) was cycle 3 of TCHP. My calfs have been feeling like they may go into a charlie horse for the last few days, and they still are, but this evening my quads started feeling like I had 'rubber legs' post too much exercise. I'm wondering if that is fatigue?
Hot flashes are coming on strong ...
Just realized almost all the hair on my upper legs is gone, all armpit hair, lower legs, feel like day 1 razor stubble and it has been weeks, some eyelashes, 50% pubic hair, and I probalby only have about 10 % of my hair on my head. Some more came out in the last week, but not in huge clumps, probably because I no longer have enough hair for huge clumps.
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Knmtwins,
I've been having the leg muscular fatigue too. Not as bad as yours but I can barely walk my dog around the walk and my legs feel like I've run 3 miles! You may be excercising too much. I had my 3rd TCHP yesterday too and I've already got the heartburn again. My dr told me it was probably time to see an gastro dr so that's next. I hate taking so many meds for it so hopefully they can give me something that will actually work.
I've never been to Europe Ike so many of you guys. Before I married 5 years ago, the only vacation I took was mission trips. I've been to Mexico, Peru many times and my beloved Africa several times. I was supposed to back in Nov but got cancer instead 😝 before I got married I was praying about becoming a missionary in Africa but it wasn't in the plans. The Lord knew what He was doing!
I'm going in for the Neulasta injection this morning and will be loaded up on Claritin and Advil round the clock for about 5 days. The last one was way less painful than the first and it's working cause my wbc's are great.
Hoping everyone has a great day with minimal SE's.
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Ok Favorite place is definitely Lake Tahoe because I love the vibe there the romance and the activities , the snow there is breathtaking ! The romance comes with fondue and candle light. Besides that love the island Bahamas, Antiqua...
In Brazil there is a place that I love is called Florianopolis, and is amazing because you have lots of good restaurants tons of beautiful beaches and there is a lake in the middle of the island so is just beautiful ! Lots of things to do activities ,shopping, entertainment . It's nice here some picks.
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Well, made through cycle 3 of AC but switched anti nausea meds because the pill I took gave me terrible headaches. Now no headaches but more nausea. So I took my back up nausea meds. Sometimes feels like you can't win with these meds. Today I get my neulasta shot. It's working but also makes my bones hurt. Walking helps some.
I love the pics JenKay, Mumford, and PinkNinja! I was thinking of my favorite cities to visit and here in Wisconsin I'd have to say Baraboo as there are beautiful hills and rivers and ice age historical sites. Devils lake is gorgeous and Ringling bros circus museum is there too. My husband lived there when we were dating and spent a lot of time there over the years. My other favorite city is London. I lived there for a semester in college and there is so much to do and see. Hyde park was beautiful and winter was very mild. Everyone seemed to have a flower garden, a little patch of green. I saw so many great plays and studied art viewing the actual works of art, not just photos from a book. Lots of great memories!
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I am new to this board. I had my first round of chemo last week and thought I was GOING TO DIE! I am a hospice nurse so this is all very new to me. We are after chemo. I found on this site to take Claritin and Aleve. Both worked well. Wish I had taken earlier. Also,miralax worked for me. Does anyone have any other ideas on what I can do to live through next treatment? Within 1 week I was back to my normal life. My oncologist is against ice caps. I do not know about icing hands and feet. Any ideas would be appreciated. Thanks
P. S To who ever liked Bali. The most beautiful place in the world!!
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Hi Eileen: Welcome, but sorry you have to be here with us. Yup, that is definitely THE QUESTION. I think we all ask that question before every treatment, because it seems our response changes somewhat with every chemo infusion. Fortunately, if you respond to your chemo the same way most of us have, feeling better is right around the corner. You will have a few days to research what to do to help get through #2.
Boy, have I got good news for you! You have found is the most incredible Forum Topic on the entire site. So many questions, answers, discussions regarding side effects, what to expect (which is different for each of us) are all here. We have been frank and honest with each other and written about experiences that might not even be discussed in "polite" conversation. As huge a prospect as it might seem, I'm going to suggest that you read our past posts. Chat with us along the way, because it might take a bit of time. It amazes me to realize that we have written 50 pages and almost 1500 posts since Mags started this topic. There are also great posts in the Starting Chemo in June, and in August, which was started by a member of our group, ladyb1234, when her chemo ended up starting in August. The breastcancer.org site itself has great information that is scientific and research based, while our forum provides experience and anecdotal information - as well as support.
I hope this is helpful.
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Thank you
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Good morning, July warriors! Welcome, Eileen. I would echo Coyote's recommendations to you, knowledge is power, and we are all about empowering each other to get through this together!
Sorry to report my insomnia has returned, and I am simply exhausted today. Was planning to go get my nails done but I doubt I'll be going anywhere. I really just want to sleep, but that's not happening. My eyes have been doing the teary, blurry, sandpaper stuff again, started before the insomnia, so I'm guessing this is more of the same some of us had last time around. Makes it hard to read, so I've just been playing solitaire. I know, I have such an exciting life.
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Mags! You need books on tape.
Coyote -- hope you've got more energy today.
Hope everyone's SEs are better today.
What amazing travels the women on this board have experienced! Sorry to say, I've travelled mostly in the United States, and mostly for work.
I'm off to teach my second class in 30 minutes -- I hope I'm more articulate today. On Tuesday, I felt like there were cotton balls in my mouth, and I was just spitting the words out.
It's also so darned hot; I sweat under my wig as I walk to class and then I feel really gross.
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Ok it's final:
We're going to a cottage in Bali (is there such a thing?), via Lake Tahoe. The cottage will have lots of toilets, a soda stream, plenty of activities through the night for the insomniacs, a dedicated dill pickle fridge, no razors, no swim-up bar (too risky with the liver enzymes), a special hat closet with lots of hooks, and many, many big stuffy couches so we can all sit around and gas (no pun intended) about our chemo experiences. Eileen (who is the newest) gets the bottom bunk (welcome, Eileen from Vero Beach). The city girls get first dibs on the mosquito netting...
See you all there.
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So onc said would do mri 10 days after cycle 2 --- oops this is cycle 3, Oh, OK in 10 days. Also says if I want I can stop at cycle4 to do surgery and come back for the rest... what, I think he said this because he knew I didn't like the neo aduvant idea in the first place and now people are getting Perjeta ajuvant, but I didn't question him. I did say, now that we are on this course and my mind is prepared, I think I'd like to continue and get all 6 done. I too explained I was worried that The Big D day might be painful in the location of the incisions, and I didn't think I wanted to add to the pain. That now that I have started, I see that as the silver lining. He smiled.
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Neulasta this morning, I thought it was supposed to be 24 hours AFTER completion of chemo. "Do not administer Neulasta® between 14 days before and 24 hours after administration of cytotoxic chemotherapy1" http://www.neulastahcp.com/characteristics/dosing... I get mine about 23 hours later at 4pm.
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Chemo brain in full swing, I kept looking for this post on my toolbar and couldn't find it, but I found tons of other ones. I'm so used to FB posting with <CR> that I guess I thought I posted them, one was from last night.
Bali too far a flight, too many chances for infections with all that recirculated air. I did Guam in my early 30's, for work, and the flight to Tokyo was long, but to Tahiti, it might kill me, now 20 years later. Also, we will all be broke after paying for all this. We need a lovely place, within an hour from a non regional airport that has cheap vacation rentals. I was going to say Tahoe, sounded good, water to US standards, so safe to have drinks with ice and don't have to peal the fruit. But, I'm clueless as to what their prices are since they are a 'resort town' and I think many of our treatments will put us at risk for osteoporosis, so skiing might not be a good idea. Maybe a campground with those large 'spa cabins', but close to the shower house, so if we need more commodes, we can run to them. I'm a practical dreamer...
Cycle 3 Day 2, took Miralax last night to see if anything would 'happen', not this morning, so it will be a bottle of chilled Magnesium Citrate tonight, drunk fast, is what the MO said. He also said I could mix it, so maybe w/ OJ, or the punch flavored gateraide... I hear it is gross. I got lemon lime
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knmtwins - TCH infusion causes me to get C also. I have had good luck with Colace but last week I took 1 Colace and nothing happened for two days so I took another. After that, everything I ate turned to water and went straight through me. I guess I should have been more patient with the first dose. I was nervous just having to drive the 30 minutes back and forth to work!
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