April 2015 Chemo Crew... Starting in April? Please join us!

ksusan

Sue, radiation is killing cells. Hydration helps flush dead material out of the body and build new cells, and protein helps build new cells as well. My RO affirmed this approach, plus lots of aloe and moisturizing, exercise to counter fatigue, and manual lymph drainage as long as the skin isn't compromised. So yes, pretty similar to the chemo regimen but with less aching toenails!

Rpayton

Kbeee: Happy 20th and may you have many, many more!!!

Addie: I know what you mean about the hunger! Hard to believe not being able to taste anything still makes me want to eat all the time! Hate this and hate the weight gain. I know we are not supposed to load up on fresh fruits and veggies but frozen grapes taste the best to me right now and help me from eating junk.

Lynne: Celebrate you tomorrow! You are worth it! BTW, the Prilosec tip works wonders too for nausea and heartburn. This time around I started taking 2x day before chemo. My MO actually suggested I take 2x day morn and night right now for the first week after chemo.

Steph: thinking of you and hoping the infection is under control fast. You have really had more than enough already. Geeessshh.

Felt a bit less fatigued today and made my hubby a fresh strawberry pie as a surprise when he comes home. Still hate that the simplest of tasks makes me feel like I'm 100yrs old. I have to really work on patience.

Scarlett152

KSusan - sounds like a good plan for the day! I got dizzy just brushing my teeth this morning! 80 minutes on treadmill is amazing. I can't wait to have energy to do cardio. Slow walking for now! Cantaloupe for dinner?? It is my go to after watermelon. Had some cherries last night and they tasted so bitter. Bummer!

KBee - happy 20th! Ours was in November and we had a great trip to Hawaii - diagnosis one month later! Interestingly, I was on metformin for five years and stopped about 2.5 years ago. Wondering about the correlation to my tumor growth? Will talk to my endocrinologist about maybe going back on.

Anyone taking Gabapentin for nerve pain and hot flashes? Just picked up the RX and the list of side effects, including depression, anxiety, suicidal ideation were a little concerning, especially to someone with a history of depression (managed now with meds and exercise). Not sure it's worth less hot flashes! I get zoladex injections and will start tamoxifen in August, so flashes are an issue, but not horrible.

Little blue - good luck tomorrow! I finished last week and although still not feeling great, there is a slowly creeping in sense of relief!

Addie29

awesome info about the protein intake. Morning of chemo I make sure to drink some orange juice, about 24 oz of water and eat a Greek yogurt but I think I need to up the protein- I also try to drink some milk. During my infusion yesterday I went through 48 oz of water. My nurse said that's awesome and that's she super proud of me. I love my treatment nurses.

DizzParkMom

Between taxotere/carboplatin #1 and neulasta (did the on-body this time) I am having a bit of pain all over and a ton of pain in my torso (similar effect with neulasta on A/C)...plus hiccups from the dexemethesone. Anyone know how long until this eases up just a little? Switching up the meds just makes me feel lost on what to expect. Only bad news this last trip was nutrition report that I am down 15 lbs since DX and natural path says I am just showing signs of anemia. Taste buds are long gone, I have no sense of hunger (even on steroids) and am struggling with food fobias based on worry that they effect treatment or increase recurrence. I wish I could just get my head wrapped around this food issue. I ate 2 little slices of my favorite chicken pesto pizza for my birthday last night (tasted horrible) and I had a little slice of birthday cake for breakfast yesterday (the cancer center delivered me a cake during my infusion the night before). We gave the rest to the nursing staff. So between the cake and pizza, maybe a little victory. Today

Jackbirdie

Steph- so sorry about all the complications....thinking of you today.

Gingerchi- Happy, Happy Birthday! I hope you have a great day.

Karen- Happy Anniversary to you both!

KSusan- I like how you've planned out your day. Thank you so much for always making time in your day to make us all laugh....on at least two threads that I know of! You are a riot!

Lynne- thanks about the pic. I am feeling almost imperceptibly better daily since I hit rock bottom over the weekend. I am almost 3 weeks PFC and I can see I have a long way to go. The house plans are still on, closing might be delayed a bit because the appraisers are backed up. I'm not stressing too much, using my energy to just keep giving my body what it needs to recover. I have had an outpouring of what seem to be real offers to help with packing, moving, unpacking, moving some of the more important garden plants I don't want to leave behind.....it has been quite overwhelming how many people have stepped forward. And my brother and SIL are coming from Philly Friday for a visit and as they say, "to help with anything I need, up including organizing for the move"....yay! After so many people acted strange, withdrew, didn't really want to know, in the beginning of this shit sandwich, it is amazing to me to have the tsunami of offers now. I guess part of it is people don't know what to do or say about cancer. But everyone has moved before, and they KNOW how to do that! I'm grateful.

Congratulations to everyone checking off another date at the chemo bar this week, and sending loving mojo to anybody suffering. Been there. I've got your hand.

Katy

ksusan

I'm sitting in a tea house having a cup of chai. The woman next to me complimented my head shape and how great I look with really short hair. No fishing for a chemo confession, no sense it was a covert cancer-related comment. Of course, she could be trying to pick me up

KBeee

ksusan, Yay for compliments!!! Wow. I did not know there were dietary thing sto pay attention to during rads. It sounds like a lot of work!

Katy, So glad people are stepping up to help you with the move!

Dizzpark, I still have nightmares about how bad things tasted on Taxotere. It drove me to tears sometimes. As bad as things taste fro me on Taxol, it was worse on Taxotere. I hope it gets better for you. Do they have a nutritionist you can work with???

Addie, How is Taxol treating you? Still feeling ok???

Scarlett, Going to Hawaii has always been on my bucket list. After this recurrence, I have moved it up...like to next year. I just haven't told that to hubby yet! I am really hoping to go...if not next year, the year after for sure.

RPayton, I bet he'll love that pie!!!!!

Lynne, Happy Anniversary tomorrow. I hope maybe you can have some good conversations about things.

LittleBlue, Yahoooo for final chemo tomorrow!

4 weeks ago I posted about a gal who happened to sit next to me at her first chemo; she had been given horrow stories from a friend and was scared to death. I was worried when I did not see her 2 weeks ago (turns out she was there at a later time). When I walked in for labs, she hopped up and called my name from across the room! I was so happy to see her. We hung out again at chemo. She is doing really well, looks fabulous, and has an amazing wig!!!!! I was so glad to hear it and to see her! I'm not sure what some of the other patients think because she's a little loud in the chemo room, but she's a riot and brightens the place up. She's awesome and the chemo nurses love her too! It was so nice to see her all smiles instead of shaking in fear.

Peabrain

Scarlett,

My husband has pretty bad neuropathy in his hands and feet after chemo for colon cancer. We filled the gabapentin prescription and then read the side effects. He decided that it just wasn't worth it. Five years after the chemo, here are some of the ways he copes with it:

Gotten used to some of it and made adjustments - it's been years since he accidently squished his sandwich or dropped a glass because he didn't know how tightly he was holding it.

Acupuncture has given him better circulation, especially in his feet. After a couple of years he was able to wear shoes again. Before that his brain, since it wasn't getting real info from his nerves, would make up stories that his feet were on fire whenever they were enclosed.

We make sure to get shoes with larger toe boxes. This keeps him from losing toenails since he doesn't make those small adjustments necessary to keep your toes from squishing into the ends of shoes. Keen has been a great brand that also provides ankle support since the neuropathy sometimes hoes up that high and makes it easy to turn ankles. Really soft leather or cloth shoes work too for dress shoes or Sanuk's beach sandals/shoes.

Medical marijuana in the evenings takes off some of the edge and this is the only drug he's decided is worth it.

The wooden foot roller helps and is sturdy enough to stand up to some abuse: http://www.amazon.com/gp/product/B00SMJIYNG?psc=1&...

At this point, he is really active, able to work again on construction sites, windsurf and hike.

I know that doesn't address the hot flashes but maybe there is some useful info in there.

Good luck, whichever direction you decide to go!

Vanmama

I read here every day but don't post very often because I feel guilty...because I had an anaphylactic reaction to Taxotere, I was switched to CMF so my SE's are so much less than just about everyone on here.

I do read, worry about everyone, and pray for each one of you. I enjoy reading about what is going on in your lives. I feel that I don't have the right to complain!!! Oh, I have issues, of course, but just nothing as severe as what you are going through!

The American Heart Association Heart Walk is being planned for September. My employer is sponsoring it in our town and we do a lot of activities to raise money. This subject is near & dear to my heart because I do deal with Atrial Fibrillation, also. We do baskets to auction off and I want to sponsor a "chemo care for breast cancer" basket. I'm coming to you to ask for suggestions for what should be included since I haven't needed so much of what you have. I have a soft chemo hat, for starters, and will include peppermint tea because I have drank gallons of it since the start of this whole thing. I'd like to hear what you feel is important to include.

Thanks so much for your help!

Laura

gkodad

Somebody asked if this whole process ages you. I think you are asking in terms of how you look. For me, my skin is where I see it the most, especially my hands. I've always been considered relatively young looking for my age....we'll see how I come out the other side this time.. Where I feel it the most is in muscles and joints. Once I get a physician's release, I'll be back to a regular exercise program and weekly massage, which helped more with muscle pain than any medication. Mentally, it ages you as well. In some ways not so good - anxiety, etc., but in others, it really helps clarify what's important in your life.

KBeee

Vanmamma, I hope you'll post more. How have you done on CMF? How are you feeling? How many more do you have? I have done well on AC-T, and I post all the time!!!!!!! As far as a chemo basket, I would put in some nice lotion. I know my skin is always dry! I'd put in a good quality brow pencil, some chapstick of some sort with sunscreen, hand sanitizers (pocket sized), pocket sized packages of tissues, herbal teas, thank you notes, gift cards for meals, book of puzzles like Sudoku or crosswords and a pen, a soft blanket, and some sugar free candy or gum. I'm sure others will have good suggestions as well.

littleblueflowers

Holy crap radiation learning appointment. First the RO is super cool and looks just like my cousin. Then, he recommended 6 weeks of chest wall and lymph node radiation to armpit and up into my neck, to start in 4 weeks. That seems like more than most folks are getting? Especially since I'm supposedly in the grey area of needing it. What is everyone else being recommended? He said it's what he would recommend to his wife or sister, so I'm gonna go for it...just curious!

ksusan

I had stage 2, 1 node. I'm getting 33 treatments--28 chest wall, armpit, and supraclavicular field, plus 5 boosts along the surgical scars. Sounds about the same.

ksusan

• breakfast (currently in front of me)
• shower, moisturize, and apply hydrocortisone (on the radiation sticker dermatitis that's now roughening with radiation)
• read for an hour
• radiation #4
• perhaps get tea, perhaps browse at REI
• meet my wife for lunch
• take in some jewelry for repair or get a few watch batteries replaced
• follow up with a reviewer who has a deadline today for returning a set of reviews to me
• nap
• treadmill another 80 minutes and do my stretches
• figure out what's for dinner besides watermelon

GingerChi

Kbee, Happy Anniversary!!! Here's to many, many more!!

Lynne, I hope your anniversary will be more enjoyable than you anticipate. It totally stinks that you're going through things with hubby right now.

Littleblue!! CONGRATS on your last chemo tomorrow! YAY!! So happy for you!!!! Good luck with rads...glad you get a break before you start them!!! At some point before I finish chemo, I'll consult with a RO for recommendation as to if I need radiation...... so I don't have a proposed treatment plan yet.

vanmamma, good to see you posting! Don't be such a stranger!!! kbee's suggestions for the basket were all fantastic, the only thing I would add is that the Lymphedema specialist I saw recommended using Eucerin Original formula lotion due to its Ph..so thats a thought.

Dizz, I hope you have a better day tomorrow. I'm sorry to hear about the taste and appetite problems!!! It has to be so hard to eat and keep your strength up!!

Steph, how's everything going??

ksusan, 80 minutes on the treadmill is awesome! You go!

Jackbirdie

well, K, I think we need a photo of you too today! Hope you and your beloved had a wonderful lunch

Jackbirdie

the chemo basket sounds wonderful! Sometimes I went for hard candies. Really tart lemon ones. Also, any tea or candy that has ginger is good for nausea. And maybe some bath salts? I started wearing earrings like never before once my hair went also. Something dangly?

LittleBlue -and My Sunshine- I want to wish you all the best on your last chemo day tomorrow. You have both done amazing getting through this with dignity, grace, and humor, my hat is off to you. Here is an advance bell ringing for you! 🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🎉🎉🎉🎉🎈🎈🎈🎉🎉🎈🎈👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻🔔🔔🔔🔔🔔🔔🔔🔔🔔

bluedog

Hello, all. I started chemo in April but just found you last week. Thank you for sharing your lives and stories. I feel close to you, since we are all going through the same thing. Let me fill you in on where I am. Did the hard labor of dose dense AC and will be getting #7 of 12 weekly taxols tomorrow. Have been relatively fortunate with SEs, but am starting to see dark spots in some nails. Have had an assortment of minor but annoying skin problems since the AC -- blisters, a rash, peeling knees (?), a painful sore, skin just generally feels weird and injures easily.

I've been able to stay fairly positive throughout, but this week I crashed. I keep thinking, "okay, I've tried this cancer thing for 4 months, but I have to say that it's really not working out for me, so I think I'll just be moving along now." Wouldn't it be nice if we could just walk away?

lovlilynne

Lisa! Good to hear from you - don't be a stranger. Regarding the basket, maybe coconut oil for the lotion? I bought some stuff that people recommended that I never used - like Senekot and hard candies. A lot of the OTC stuff really adds up - like Claritin, Prilosec, and stool softener - but maybe that's too treatment specific. The cap/hats are a good idea because they are expensive and you can always use them. As far as a blanket, I was given a quilt on my first day of chemo, but never used it because 1) it's summer, and 2) they have heated blankets that they offer at the center, so if I'm cold I prefer their blankets and not having to cart one back and forth.

bluedog - glad you found us. Yes, sometimes this reminds me of when I was in labor. I gave birth to all three of my children with no medication. Always at the end I was like, "I'm done." I wanted to stop, but I knew i couldn't. Just something that you had to get through. Of course, such a wonderful end result with that experience. And, it's over so quickly compared to chemo. Still, I today is one of those days, I feel achy all over, sore throat, sick like no sickness I've ever had before, and I just want it to be over.

ksusan - impressive list, and even more impressive what you've got accomplished. When I saw your list earlier, I thought that I need to make a list too. I'm busier than ever being home. I had calls to make, bills to pay, still unpacking from vaca. I ran out of energy, though.

Jen, every doctor I've seen has consistently said 33 rads treatments - it's about 5.5 weeks, so maybe they are rounding up to 6. I guess there's some debate about the field. Boston RO said I'd have neck area included due to +node. I have my appointment with RO who is my friend on 7/31 - which is after my last treatment. I wanted to go sooner, but scheduler said they want to wait until I'm done, which is ok, but I figure this appt. is just to talk/lay out the plan, I still need to schedule the other stuff - mapping or whatever it's called. I don't want to lose any time waiting for that stuff to be done. As it is, if I start 3 weeks PFC, I will be going into October b4 I'm done rads :-(

Oh, MO said something weird to me this time - she was commenting on my weight and that I haven't gained (but haven't lost), she said as little as 6lbs gain could contribute to relapse. I assumed she means reoccurrence? I didn't think to clarify at the moment, but then when I thought about that word relapse, not sure what she really meant. And, why 6lbs - I can fluctuate 6lbs in a day, and it's not a lot % wise, but I'm sure someone like Addie 6lbs would be a lot.

Lynne

Positive_spirit

happy anniversary Kbeee ..and what a great line! Thanks for your kind notes and all your reflections! You run for all of us!

lynne, happy anniversary to you, too. I know it's hard.

Happy birthday, Gingerchi!

Stephmoen - praying that everything turns out okay for you and those fevers subside. You have been through some rough stuff and I am hoping that the next phase of treatment goes smoothly

Little blue - woo hoo, last chemo. I will have frogs in my underpants now! 😁

Andrea - good luck with your RO meeting and upcoming radiation

Stephmoen

thanks everyone 2 of my blood cultures are positive so they are definitely thinking I am septic ugh what are the odds my port getting infected and causing this..not very high bummed out butfeeling descent temp was around 99 to 100 today not too high just getting those antibiotics pumped in me waiting for them to do their job

ksusan

Thinking good thoughts for you, Stephmoen.

I sent a question to my RO though the patient portal. In the pull-down list, I selected my RO as the recipient. Today I get a note back from the nurse who gatekeeps the portal questions, saying she's sent it to Dr X. Dr X is the MO I fired. I've clarified this with this agency. I didn't address it to him. It's a radiation question. :roll eyes:

mysunshine48

Laura, I go along with what the others have said, and would definitely do the coconut oil and something for constipation! I have Peri-Colase and it has worked well for me. I also put Vasoline on my lips every night as they get very dry and even Chapstick does not work very well. Depending on how much money you have to spend, or if someone asks what they can donate, gift cards to a grocery store are always welcome. I use a soft head covering on my head every night too.

Ksusan, 80 minutes, really! I cannot do 10. One machine that is not for me. I like the recumbent bike.....for old ladies! And, the treadmill so I can watch TV. It is all so boring. I would rather be outside, but with everyday being 95 and humid, it will be several months before I can walk very far outside. Plus, T/C tomorrow, so will be laying low for a good whule. T does not like me, or I should say my body does not like it. But, if it does the job, I will suffer through the next few weeks and hopefully start to regain some strength.

I am so thankful for all of you and the support shown for everyone. I love you all and pray we all live to be very old, healthy women!

littleblueflowers

Dang it Steph! I'm so glad they caught the infection. But seriously. Bacteria are stupid. I moon them, )@( that's my butt. 😆Sending healing thoughts to you!

Sorry yr feeling rough lynne. This is a sucktastic marathon to run, isn't it? I hope u feel better tomorrow!

Thanks for the kind words jackbirdie! How are you feeling?

Ksusan, all those mermaid steaks must-have given u super strength..or radiation gave u Bruce banner armpits..

Ginger..your birthday? Here's to many more!

Hi bluedog! Welcome! I had a dog named blue once..

Hi lorraine! Love you lady!

GKO, you riding with me tomorrow chemosabe? Boots and spurs lady, it's time to go raise some hell with the bad guys!

Hi everyone else! Hope ya all are well...

Jackbirdie

inches better today. I see progress, but I need a magnifying glass

SueH58

Steph - how long are they thinking you'll need intravenous IVs? Hang in there!!

ksusan

I have a shelf that serves as a desk across my treadmill and I'm not going very fast--2.4 to 2.6 MPH right now in order not to sweat or chafe or put too much stress on my toes. I can make it more interesting by surfing the web or watching video (or doing some work without being on my butt all day). Mr J the cat usually joins me on the shelf.

mysunshine48

Laura, I just thought of something else....important.....a big box of soda, a container of salt, Biotene toothpaste and mouthwash and a soft toothbrush. Mouth care is really important during chemo to keep the mouth sores away. Just my thoughts.

Alibeths

congrats little blue!!!!!!! Yay!!!! I still haven't made my Rads appt yet. Is everyone doing 33??? UGH. So done with this.