Starting Chemo September 2015; join us!
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I bought pink pockets so I could tape these pockets to any outfit I wore. Glad I did as I had drains for 5 weeks. Adjusted it at the right level and slipped them right in. I had 4, 2 on each side. When with a TE exchange later on, I'll be using them again.
pinkpockets.com
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Rads question: Talked to my PS today. He says with the skin damage you get, it's going to be about 6 months until the TE exchange. Seriously?? Sounds like you get fried??
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i met with my ro today. She said a small percentage of people have a more intense reaction to rads and skin can blister. If that happens they give yoy a few days break and have a special creme to use.
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Hello to all.
Southern - how did your surgery go yesterday. Hope you are well and healing quickly.
Fidget - good luck tomorrow!
Regarding drains in the shower. I used a lanyard that had a clip on the end. Simply attached the drains to the lanyard when I showered. I think a nurse suggested that.
Got a call from the MO office. Seems my Vitamin D is way low. She prescribed a mega dose 50,000 units per pill. I am to take one pill a week for 4 weeks. Then check blood again. Possibly 4 more weeks of mega dose after that then go to normal daily dose. Apparently chemo can zap your Vit D among other things.
Peace and healing to all.
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great ideas from everyone on drains. A lanyard is genius!
Scotland - i felt a tinge like a pinched nerve when they zapped me with the bolus. I asked about it and the tech said that was unusual to feel anything different but it does bring the rads to the surface of the skin so maybe. Probably my imagination but we shall see if it happens again on Monday.
My RO said to wait 9 months until my reconstruction and my PS said to wait 6 months. We're going to wait and see how my skin goes and then decide. We may split the difference and wait only 7. That should be around my birthday and it might make an awesome present.
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I pinned the drains to my bra, and used a lanyard in the shower. My biggest issue was trying to hide them when I went out in public. I had a UMX, and am just too small to hide a pair of lemons in my shirt.
El Tigre: I told the RO that the area around my collarbone/ base of throat felt a bit odd, but that I was probably imagining things as it was only treatment 3. Last night, after treatment 4, guess what was pink? Ugh. My BS and RO both said at least six months after rads before reconstruction. That would be September. Guess I'll start shopping for a PS this summer. I have a followup with the BS in a couple of weeks, and will ask when and how to proceed. I'd rather not wait until I'm completely healed to find a PS I'm comfortable with and discuss options, although I know that we can't make a firm plan until I'm declared healed from rads and they know what they have to work with.
Arista, yes, fried. The point of rads is to kill all tissue at the site of likely recurrence. Just in case any stray mutant cells are lingering. The normal cells regenerate, but the cancer cells can't. My RO said that the effects of the radiation should peak 7-14 days after the last treatment, and that I should notice vast improvement within a couple of weeks. Apparently, it takes about six months to completely heal. I don't want to wait until fall for reconstruction, but I get that cosmetic surgery on damaged tissue probably won't look very good. Also, the tissue damage shows up on imaging, making ultrasounds, X-rays, MRI's, etc. not very useful. One delight after another! But at least I'll have a few months to fully enjoy the Tamoxifin SEs before reconstruction.
My RO told me how he wanted me to be good and pink to make sure I was getting enough to radiation, but no blistering because then they wouldn't be able to burn me the next day. Doesn't the Geneva Convention cover this?
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Hello all...still reading every day even if I don't post much!
Southern, thinking of you and sending very, very gentle hugs, hope surgery went well!
Shelly, my MO also put me on megadose vitamin D. I think it helped. at my apt next week I will find out if I should continue it (they ran a test when I was there last, while I still had a supply: my rx was for 16 weeks though the dose was a little lower than yours. I just took the last pill this week).
My skin did fry indeed, to the point of peeling and some blistering. It did get worse for about 10 days after rads, but once it started healing it has healed really, really quickly. Hard to believe it will take that long to totally heal, but I could see why they'd want to be cautious if surgery is involved.
If anyone is interested in seeing how hair is coming 12 weeks PFC, I posted some pics on the hair, hair, hair thread...
Sending hugs to all!
Octogirl
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hehe i posted.... my fuzz, Thanks Octogirl
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Southern - OMG they didn't do some "cocktail" before the OR room? I'm so sorry. I had a breakdown too the morning of my surgery, totally normal my PS had to calm me down. Thank goodness that nurse was comforting.
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Southern, someone told me not to look at the surgery site in a mirror for a few days. It's a bit more shocking to see it with your head in the picture, I guess.
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Aww southern so good to hear from you. I also cried when I was on the table. I was so scared and it hit me that I had to put myself in their hands. They too tried to comfort me but by making me laugh. I did walk into the or which helped. Hoping for negative nodes and clean margins.
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Lashes lashes la la la!!! Here they come! 😊
Southern - glad your surgery went well. I sure understand your hesitance to look at the site. I didn't look at my breast for several days post surgery and I had immediate diep. When the nurse would come to "check" it every hour, I would just turn my head away. My advice is to take it one step at a time. There's no hurry. 💋
Hugs to all the rad-iators.
S.
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Thanks for the info on rads. Glad to hear it's standard quo and not that PS anticipates I'm not going to do well. Glad to hear everyone is on the upside. Not seeing real terrible SE posts is great! El Tigre, if you ordered the charcoal soap let me know what you think of it. Happy week end all!
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Yay Southern!
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Stopping in to give encouragement. Southern be kind to yourself. I bawled for three days after this surgery seeing my "new nipple" It was all gross and matted and just yuk. I didn't think I would ever calm down but the sun came up and a few weeks later I felt pretty calm. I am sure your breast looks fine with just a seam like mine from my first mastectomy but Its ok to have a bit of a cry and get up the next day ready to kick butt again. We all have been there.
There are a few gals having surgery this week. I am thinking of you and sending healing thoughts your way.
For those of you in radiation I am going to ask my wound doctor about protein. For surgery he told me to continue to get 100grams of protein a day and at least 15 grams glutamine. Cottage Cheese, protein drinks etc. he swears it is so important. He treats radiation patients so I am going to ask him if this applies as well. I know he treats burn patients etc.
Sometimes I feel like Han Solo in Star Wars "Never tell me the odds!" I have my days where I try to steer myself away from dark thoughts. I keep reminding myself "That is not a train ticket you want to punch."
My MO will not tell me the odds I have and because of my weird situation I can't put it in some calculator either. Both MO's refuse to give me any kind of estrogen for my hoochie area or run addition scans. Truthfully I don't think he even knows. I think its challenging to stay positive and carry on with all that we are facing but we continue to do so.
Shelly, Shopgal and Eltigre : How is your energy level on rads? Are you feeling more "normal"? Do they allow you to apply anything to the rads area like a cold compress or anything to prevent getting crispy? I think my hair might be worthy of the "hair hair hair" thread. I will try to take some picks tomorrow.
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Southern, I'm so glad your surgery went well! And I agree with the others--there's no rush to look; do it when you're ready. It'll still be there.
Exercise_guru, I have to remember what you said about protein when it comes time for my surgery. I forget if I told y'all that the surgeon's office called me with the actual date: Friday, March 18. Something about that freaked me out, despite the fact that I thought I was all right with everything. It made it real in a bigger way. And I'll admit I'm dreading it.
I've been in a funk the last few days. I've gotten through Taxol #10, but the side effects seem to be collapsing in on me. The neuropathy in my feet is so bad that I fell down, which freaked out my older daughter. The joint and muscle soreness is painful, I can't sleep, the heartburn gets worse every time, my eyes are twitching like a meth addict, my skin has hideous acne and other bumps all over my face/head/neck, I can't taste anything plus the mouth sores make it painful to eat. And the emotional aspects of everything are closing in--missing out on so much with my little girls, dreading the surgery and wondering about the outcome, plus everything else just from living life. I'm so tired of being tired.
Thanks for listening to me rant.
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exercise, I've only had 3 zaps but I feel fine, normal. I apply lotion directly after and right before bed. I'm told to watch my scars to make sure they do not get irritated or open up, yikes. Also to watch for swelling and do lymphatic massage to relieve it. I hear eat protien and hydrate. Vitamins like b12, D, calcium, biotin, and garlic are ok. I'm also on lyrica that they said should be ok to take during rads, if I experience some unusual nerve pain in the treated area we might have to reduce the lyrica dose.
The other forum I go to also suggests cold air and cold cabbage leaves. I know sounds different but I'd totally try it.
Artista, will do on the charcoal soap. I'm done with rads tentively 3/7 so I may not order it and use it until then
I get to ride the tram we have here in portland. It's nice but I'm not a fan of closed spaces and heights lol. Everyone at the RO offices are nice they gave me lotions my first visit and answered any questions we had. The radiation machine was intimidating but they also play music of my choice on pandora. The breath hold machine mouth piece leaves a yucky taste afterwards.
For once it was not raining lol
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CarolinaAmy - Taxol SEs have gotten worse for me after treatments 10 and 11. I now have difficulty walking and can't stand for more than a minute or two without leg pain and weakness.
Have you talked to your MO about reducing your dose (you may have already) or cutting treatment short? My neuropathy has gotten bad enough this past week that I'm 50/50 on whether I'm going to have #12. (Much as I would hate to do that since I've already been on a reduced dose since #8.)
We're in this together and I'm pulling for you. Hang in there - you can do it.
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Hi Lisa, I don't have an appointment with my MO until the last day of chemo. I feel a little lost and think I may have to call her nurse and tell her it's getting bad. I really don't want to cut treatment or reduce it, but I am getting very concerned about the possibility of the SEs becoming permanent. Are you having loss of taste, too? (Or headaches?)
I'm so glad I finally figured out where I heard about the Goat Milk Stuff! I knew it was cancer-related but couldn't remember which thread. LOL I ordered a few different soaps from them and am looking forward to trying it out. I'm bummed that my favorite scents were all ones that use soybean oil, which, though I'm triple negative, I am avoiding just in case. *sigh* I'm hoping this might help clear my skin up. My face, head, and back of my neck are just riddled with bumps and acne. I can't figure out what's going on, but it was very sudden after one of the Taxol treatments. Grrrr.
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I would call the nurse. Does your practice have an after-hours / weekend onco call-line you could call in the meantime? I SO share your concern about SEs becoming permanent - it is my big, red line.
Yes, I have had loss of taste (although not as horrid as with AC). I've also had on/off numbness in lips, tongue, roof of mouth (I'm told this is an unusual but not unheard of neuropathy). No headaches.
On reducing dosage, I didn't want to do it either. But I'm certain I wouldn't have made it to #11 last Tues without the reduction to 85% without really bad neuropathy. If I don't have any more Taxol (only 11 doses total), I will have had 85% of total Taxol I would have had with 12 doses at 100%. If I can do #12 at 85%, I'll have had 93% total. I know you get the tradeoffs. My MO was intent that I get 10 treatments in (even with the last ones at 85%) - it was a magic minimum for her. Hold a good thought and keep us updated. You're going to make it.
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Sweet Carolina- I am so sorry to hear your SE. I share your pain. I have completed my 4 DD taxol with the last dose being reduced 15%. The neuropathy sux. My doc prescribed neurontin for me. I filled the prescription but haven't taken any so far. I describe my SE as major discomfort but not significant pain enough to warrant the med. She really encouraged me to try it. Says it will help.
My tongue did have neuropathy but I think it has mostly cleared. Most of my taste is back now with sweets being a favorite -unlike pre chemo. 😕. I also had similar skin reaction after one of my taxol treatments. So bizarre. It gradually went away and did not happen again, thankfully. Bumps turned to little scabs so it took awhile to go away. I agree with others to inform your doc about how you are feeling. I suspect a reduced dose or greater change is warranted.
I describe my feet as feeling "burning cold." I find relief from a heating pad in my covers at the foot of my bed. Maybe it will work for you. Hugs to you warrior friend.
Artista - thanks for the info on the deodorant and soaps.
MnLisa- one more to go. Hooray for you. Prayers that your SE reduce.
Southern - you are brave and strong!
Fidget - hope you are feeling well post surgery.
Exercise - no rads for me. Next stop is hysterectomy on Feb 11 with Femara to follow. Then, maybe I'll think about getting myself a nipple. I'm down one. 😏
My best to all. Have a good, restful weekend.
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Shelly
Sorry my bad chemo brain!
I was meaning to post about the hyster/BDO feel free to pm.me as it gets closer. I did mine 6 weeks chemo it was a kicker but it's nice to have it over with. Easier than my bmx but coming off chemo I was not 100 percent the first two weeks after surgery. Gratefully my mom is here so I am getting a chance to recover emotionally and physically from the last 8 months.
They did my nipple and areola from tissue in my abdomen but there are a thousand ways to do nipples. I looked at tons of pictures at my PS. I probably looked at more boobs than a teenage boy.
Minnesota Thinking of you and Carolina Amy & Shelly. Hoping you can get through and that the SE will subside.
Minnesota yoou know if it get so bad hopwfully you can either skip the last one or ask them to reduce it again so you can feel ok about being done.
My hair doesn't stand up now I am 10 weeks PFC even my MO thought it was growing at a good rate. I bet it's the protein.
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CarolinaAmy - Sending you positive thoughts for the tough decisions. I'm only a few weeks behind you (Taxol #6 this past week). You should definitely call your center to get their assessment on SEs and moving forward. As Lisa mentioned, reducing dosage may enable you to get through another one or two infusions without significantly worsening things. But even if you decide to discontinue, you have done so much. From my understanding, the basic plan of 12 infusions at standard calculated dosage is designed to be as much as your body can tolerate, and not necessarily the minimum required to effectively treat the cancer. Hang in there - I know you will make the right choice for you.
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hi all! I'm trying to catch up here. Thoughts and prayers for those facing triais of various kinds. I'm in week 2 of the flu and miserable.
Our nanny left us in favor of a family with an unlimited budget. The twins start preschool on Monday. I am so sleep deprived and sick. I cannot shake this relentless cough. It is a seriously TWISTED joke to get the flu right after your FC!!! I feel like I have sick forever.
tessu and others with a not so favorable prognosis- I have a 70-80% chance of no mets in 10 years IF I stick with the AIs, so I'm with you. I finally made peace with it, but it's a hard pill to swallow at 35.
Xo!
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exercise I have had 12/30 rads. I was slightly tired after the first 7, but when I started back at work this week I am more tired. I think it's a combination of not having worked for 5 months and the drive to rads in the am, then the drive to work, and the drive home plus my regular work day. Rads are 10 min & it takes longer to get undressed, have the techs do the setup to position me, than to do the actual rads. Last week my boob looked pink, this week I'm getting tan and my boob feels harder. I use Sween cream that my ro gave me. I put it on right after rads before I get dressed, and before I go to bed.
Southern hope you are icing and resting. No lifting with the lumpy arm. Be good to you. When do you get results & know about nodes? Praying for you.
Oh no Amy about the worsening neuropathy. I would ask for a reduced dose. I know as TN we want to hit it with all we have but I am really worried about you. I did my last 2 dd taxols at a reduced dose. And I was on the verge of developing permanent bladder neuropathy. I also fell down twice. Scared the crap out of me. Many times I crawled up my stairs because I couldn't walk. As for the back acne I had it plus weird raised bumps on both of my shoulders and upper arms.
MLisa wow you are a trooper for doing #11. You are a tough chick. Sorry about the sludgy lead legs.
Shelly yay for lashes & sorry about taste buds. My appetite is gone on rads. It was fading after chemo and is mia now. I can't eat sweets. They are actually too sweet. I have lost about 15lbs since after chemo and am only eating healthy stuff. Lotsa fish, chicken, & veggies. Minimal sugar, carbs and no bread. I do feel good and have more energy due to a lot of vitamins. Although I only drink water now, I need to remember to drink 8 glasses a day. I felt dizzy periodicallyat work Thursday and told my rad tech team Friday. They said my blood sugar must have dropped and bet I was dehydrated.
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Shopgal have you noticed a change in taste with radiation? Ive only had four sessions and today I have that awful metallic taste back. I also have a cough. The fun never stops.
My thoughts are with those who have had surgery and still getting through chemo.
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I just crossed something off my Bucket List: visit my dear sister-in-law again
During difficult parts of chemo, I pushed on because I so very much wanted to visit my (also cancer-fighting) sister-in-law at least one more time; her cancer is much more advanced, and after several recent strokes, she is no longer well enough to travel. Well, husband drove us the almost 6 hrs to Helsinki. We spent all of yesterday visiting at my SIL's daughter's home, where my SIL was on day pass from the hospital. We hugged and chatted and laughed ourselves silly. "Laughter is the best medicine" is so very true
I felt hopeful and happy for once 
I don't know if/when I'll get to hug her again, but am so very glad for yesterday So much better than just chatting on the phone all the time I think I will continue to set short-term goals for myself to reach, something to keep me going when I start slipping into that dark thoughts place. "Percentage of patients still alive at five years..." --- somehow I just can't relate to that. I guess I need something more personal and concrete. So, my next goal: my birthday in March. After that, a favorite yearly work conference later that month.
While in Helsinki I treated myself to a pack of feel-good socks:
Wishing everybody strength to face the start of another week.
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cinque I don't have metal taste. Just a icky taste after using the breathing machine. I was nauseous twice last week after rads. And very light headed Thursday.
Tessa I'm glad you got to visit your sil. I think you both needed each other. And the socks are awesome.
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Tessu - Had a tough Sunday and you put a smile on face. You inspire me! What a wonderful visit - and I love the socks, too. Thank you.
Sending everyone sunshine and good thoughts for whatever next week brings you, from cold and bright Minnesota
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Minnesota: gorgeous picture!
Tessu: so glad you got to see your SIL.
Cajun: I hope you're on the mend. I've finally caught the cold the rest of my family has been passing around, and am grateful it isn't the flu.
I'm about five weeks PFC. I have a decent crop of colorless fuzz on my head. Real hair is starting to grow. Some eyelashes are growing. Brows haven't fallen out, but I think they will as the texture is now fake. Minor improvement in neuropathy. Nails are wonky. Taste is almost normal. Nose and eyes have mostly stopped running. Two weeks after AC, the SEs were mostly gone. The Taxol SEs are lingering
No real side effects from rads thus far. Slight pinking and muscle tightness. Five down, 25 to go!
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