April 2015 Chemo Crew... Starting in April? Please join us!
Comments
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Andrea--how frustrating!
GingerChi--hoping for the best.
Karen--sounding good!
#12: I am grateful for good friends.
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Gingerchi, We must have been typing at the same time when you last posted. I hope the new antibiotic kills the infection quickly!!!
Karen, glad things are going better.
This is the first time in a long time that I heard AC and thought air conditioning and not chemo! That must mean we are all getting further and further from the red devil
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Ginger and lynne, how are you ladies feeling? Lynne, is your throat any less yucky? Ginger, are you still in the hospital? Sending good thoughts your way to both of you!
Kbbbb, LOL...AC...so now I bet when someone says we need more AC in here it makes your skin crawl, huh? It sure does mine!
ksusan, LOVE the gratitude journal! Yours has made me focus on the things I am greatful for in my life even more!
I am greatful for my mom, who comes and takes me to treatment every single time and stays the weekend.
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sheshe when do you get your pathology reports back I'm so anxious to hear your results!!!!
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2 weeks post-chemo.
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HAIR! Ksusan you have HAIR! So happy for you!
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So my MO is still on the fence about having me do radiation. He said it was due to the fact that my tumor was right in the grey area of weather I needed it or not. I will meet with the radiation oncologist right after my last chemo but until then, can any one recommend any good info on pros and cons? I have read what this site offers as far as rads info, but I think I need more...Thanks!
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My friend who was triple negative told me that in the past 3 years, rads are recommended to any triple negatives with even one positive node. I do know that both of the people from my Sept 2013 group who have had local recurrences, were early stage and did not have radiation. It does definitely increase the risk of lymphedema though, and it can make reconstruction more challenging.
ksusan, woooohooooo on the hair! I did not have that much until 4-5 weeks post TC last time. You are definitely an over achiever! I still pretty much need a magnifying glass to see that my head is trying to grow fuzz, but I'll take it. I do have to say though, that oddly, short hair drives me more crazy than bald. I am a ponytail girl.
I know that fresh fruits and veggies are not recommended during chemo. Right now those are the ONLY thing that tastes at all good, so I am eating some anyway, just washing them thoroughly. And after 5 years of trying, we finally were successfully able to grow blueberries. No one else was home when I picked a cup of them, so I ate them all myself. Yum!!! I'll share the next time I pick. DH is gone for the weekend with 2 of the kiddos anyway.
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So frustrated! I had my post surgery visit to my surgeon yesterday and he still doesn't have the pathology report! I've been on pins and needles all week waiting to hear... did he get it all? do I have clean margins? lymph node involvement? arrrgh!!! Now the weekend is hear and I have to get through it before I'll hear anything! On the positive side, I am healing really well and have had very little pain. I'm so thankful for that.
Steph so glad to see you tolerated your taxotere well this time around. I hope the next two are just as tolerable. I hope you're feeling low se's from it too.
Gingerchi, sorry to hear you're in the hospital. I hope they get everything resolved soon and you back in your home.
Lynn, hope your throat is feeling better and all se are subsiding.
Ksusan, after your first peach fuzz picture, I started checking my own bald head. At first I thought it was my imagination, but nope! I got my own crop of peach fuzz coming along! Looks like it might have a bit of curl which is not the norm for me. Excited to see how it develops!
Wishing all a happy se free weekend!
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Off the top of my head (where this hair growth may still drop next week, but here's hoping it doesn't):
Generally speaking, radiation hits the area where you're more likely to have cancer cells lurking--chemo is systemic (like napalm), radiation is local (like a house-to-house search for enemy combatants).
Advantages: Kills cancer cells in the areas around the tumor that was found. Reduces recurrence and (depending on your particular characteristics) reduces mortality a little or more.
Disadvantages: Long-term side effects--the major ones being thickening of the skin, reduced range of motion, possible cardiac effects if on the left side, reduction in lung function, scar tightness or stretching, small chance of causing another cancer, skin discoloration.
That said, I was told by two ROs at different clinics that the lung function reduction wouldn't be noticeable even though I have asthma, and that stiffness, tightness, and range of motion could be managed well by PT. I've started pre-radiation PT for range of motion and scar adhesion now so I'll be in good shape to start; what I and the PT do during radiation will depend on how much my skin is compromised during treatment.
The most frequent short-term SEs seem to be temporary skin discomfort or pain, skin damage, and fatigue. The fatigue seems unrelated to what level of fatigue people had in chemo, if they did that. Some people also find the process frightening or impersonal. I intend to reframe any feeling of being a piece of meat as "The techs are busy making sure everything is lined up very precisely." For those who have already done chemo, I'm guessing part of the difference is that in chemo, the nurses are watching you for signs of a bad reaction, and possibly chatting more, plus their most Star Trekkie gadget is an IV machine, whereas radiology has the giant Imperial Stormtrooper rotating zapping apparatus. (Yes, I know that's Star Wars, not Star Trek. I read a lot of science fiction.)
I'm in the "5%, maybe up to 8 or 10%" range of recurrence reduction for radiation, and only around 2-4% decrease in 5-year mortality, but I decided to do whatever treatments I can tolerate, and both ROs recommended radiation based on my characteristics.
I assume you've looked at the recent radiation threads?
I'll have my simulation on 7/1 and start the next week. I will report back!
Edited to add: Sheshe, that bites! Keep breathing and call Monday early to get someone moving on this. The photo I posted is an enlargement from a phone photo--it works well for detail (though I do wonder, What are those scratch-like scars from? Why do I have a discolored triangle of skin at my crown? Oh, the body....)
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ksusan and kbeee,thanks for the info. I am definitely leaning toward radiation. As a TN, this is my one shot at this, and I want to throw the book at it ( and a Sherman tank. And maybe a small mountain lol) I have been following the rads threads, and really, injury seems like small potatoes after cancer. I have a consult with a lymph edema PT on monday, because of the giant cord I already have. Hoping to get a prescription for a compression sleeve and hoping my insurance will pay! Unless my medical team really doesn't recommend rads...I am pretty sure I want to go for it...
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Would it be OK to join your group? I had my first treatment yesterday but did not find a group for June and have been following you since the last week of April.
A little about my self. I work for a school district. I am IT support. Actually a do just about everything. Network administration, IP phones, computer repair, technical support, etc. They just hired me an assistant in time for my treatments. The whole administration and faculty are so supportive and work with me any way I need. There are about 5 of us there that have our bouts with cancer.
My first breast cancer diagnosis was in 1996. Went until 2011 when I had my first re-occurrence. Then in 2013, and now again. In 2013 I had tumors in my lungs and bones. I went on a 2 year trial GDC-3200-PIK3. In one year all trace of cancer was gone from my lungs and bones. July was to be the last month to be on this trial. My PET test in April showed 1 cm and 1.3 cm lesions on my liver. I suppose the cancer has mutated. I don't know. I have started another trial yesterday. The trial drug is Vantictumab and it affects the cancer stem cell and has showed good results. They are adding Paclitaxel to it. First week is Vantictumab and Paclitaxel, 2nd and 3rd is Paclitaxel, 4th is off week. They gave me Benedryl and a steroid. Was not bad at all so far. The worst was they took 16 vials of blood for testing. Luckily the nurses all are experts at sticks and I never felt a thing, or maybe I have been stuck so much in the past that I have no feeling. Drinking lots of water, taking Clariten, stocked up on lemon, lime and orange fruit pop-cycles, and teatree oil. Also have my lint brush oil ready for when my hair starts falling out. Because of the last trial my hair hardly grew any, so kept wearing wigs all that time. My DH said he liked me wearing the wigs because instead of an hour getting ready, it takes me about 20 minutes. LOL! He is my biggest support. He is such a big help. I feel so sorry for him. Every time we get a re-occurrence (notice I said we, as it affects us both) I sometimes catch him watching me. We have faith that God will once again provide my healing.
I want to tell you that each of you ladies have my utmost respect and awe. Each are and will continue to be in my prayers.
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The June group is called Chemo in June.there are several of us on it and the May group too. I find it is good to read my month and a couple of previous months. I have learned so much from others and it is a good feeling when I can pass on helpful information. I came into this knowing nothing! These boards and women are wonderful. I feel like I personally know some of them.....wish I did
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Woodburns, you are welcome here! We had a November gal join our Sept 2013 chemo group, and we're still great friends! I am sorry you are dealing with this beast again.
Sheshe, I would be soooooooooo frustrated. I hope you continue to heal well. Have they given you a reason for the delay? Mine was ready in a day.
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Kbeee, I was told to thoroughly wash fresh fruits and vegetables, not to eliminate them from my diet. I've done so and eaten them all through chemo, for what it's worth.
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I also was told to just wash fruits and veggies really well. And peel them if at all possible and to avoid buffets at all costs.
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Kbeee, I had my surgery a week ago Friday and was told it take 4-5 days for results. I didn't count the weekend, so I figured I would either hear if not Thursday, then Friday at my visit with surgeon. All he could tell me is that they had not given him the results. He had one of his office girls checking, but to no avail. He was very apologetic and I don't blame him, I really like him. If anything, it's the lab.... don't know. Will call on Monday if I don't burst before then!
Woodburn, Welcome! So sorry you are fighting this yet again! We've a good group and the few always room for one more.
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Yes--"avoid buffets and salad bars" was mentioned, too. I've brought food to potlucks and served myself what I'd prepared and other cooked foods right at the beginning to avoid both unwashed fruits and vegetables and the germs of my fellow humans and sticky children. My hosts have been very understanding. There's a new Cambodian restaurant in town and I've been waiting to try it until I'm less vulnerable--maybe in another week!
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Welcome Woodburns! Sorry you have to fight the monster again, but we would be glad to have you!
Kbeee, my oncologist told me to just wash fresh veggies and fruits really well. Knock on wood...
Ugh my middle fingernail feels like I smashed it. Think it's gonna fall off?
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I hear that. We're constantly going to friends and family's houses for get togethers and everyone has kids- young sticky germy kids- including myself. I usually bring some yogurt, my own filtered water, and some other goodies along with me. Everyone is so understanding about it. Even had to pass on some yummy homemade cake because my MIL used unpasteurized milk for the frosting. It was a sad day for me but I filled in that void with some mint ice cream
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Littleblue, keep the nail trimmed short and well-moisturized. So far I've retained mine, though at points in the TC cycle the pain has been enough to awaken me at night.
Addie, I was told "no unpasteurized foods that are normally pasteurized," so I've had a jar of a friend's raw honey on the counter for 3 months! I am so hitting that as soon as I'm done with chemo recovery!
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I have been only eating fruits and veggies at home and washing really well first. Not much raw, I usually steam or roast. I'm very selective, local grown or USA grown. I was told to avoid any restaurant fruits and veggies as they probably haven't been cleaned well and most likely from out of the US. I had an incident with blackberries grown in Mexico several years ago. Brought them home from Costco, washed them and ate them. I was in the hospital for 4 days with a parasite. It was brutal!!! Fever, delirious, vomiting, diarrhea, horrific stomach pain.Came to find out that Mexico irrigates their crops with contaminated water, sometimes sewage. No amount of washing will get rid of that nastiness. I have nothing against Mexico but after having been so very sick I can't eat what is grown there. Just keep in mind my experience. I was strong and healthy and I can't imagine I would have survived that with a compromised immune system from chemo. Yikes!
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Welcome to the group, woodburns! I'm so sorry you've had a recurrence...damn cancer! I hope your treatment is successful.
Littleblue, I am TN as well - on the right side. No lymph node involvement though. Radiation is recommended for all TN's. My left tumour was ER and PR positive but there was lymph node involvement there so I get to have that side radiated as well. I figure I'll throw everything they've got at this cancer. The RO is doing a "kinder, gentler" radiation on me because I want reconstruction. So it's 28 sessions rather than the standard 16.
ksusan: re nails...I am on TC as well and have had no nail issues at all. Do you get ice to your hands and feet while you're getting the taxotere?
Re fresh produce etc. - I was never told (except on here) about washing fruits and veggies thoroughly but I always have anyway. And I was never told to avoid pot lucks and buffets although I haven't felt much like socializing so that is kind of a non-issue. I really am not all that worried about germs, the Neulasta seems to be doing its job...my WBC's are always good. I haven't been having as many visits with the grandkids though because they have colds half the time.
Andrea
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My MO never mentioned the fruits and veggies, but the chemo nurses always do. I am glad you all are pretty much doing what I do. I do get most from the local farmers market and I am now getting some from my garden. My MO is big into gardening, so he'll probably be good with me washing my own stuff and other local stuff. Thanks for the reassurance; I live on salads in the summer, and that's about all I can taste and crave. I guess better that than junk.
Sheshe, The path lab is probably the source of the delay. They can be notoriously slow. I hate that they are keeping you waiting so long.
Little blue, Last time I lost one nail. It turned blue almost immediately. It regrew quickly.
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Lynne - so sorry to hear about the side effects which sound terrible
Gingerchi- here is hoping that you get a fast and effective treatment so you can better soon
Ksusan - wow, I am amazed at your hair...it's wonderful to see. Mine has not sprouted yet.
Andrea - you have been through a lot. Hoping tomorrow brings you a lovely day.
Sheshe - completely understand delayed pathology report results, Monday will come soon
Addie, littleblue, and Stephmoen - hope you ladies are managing okay. Thinking of you.
Kbeee - talked to my MO about recurrence. The most common statement I get to hear is that "it's so unlikely." I always think of you and others with a sense of gratefulness at these times. Your experiences have helped positively shape how I think about cancer.
Wishing the best to those going in for treatment next week!
I am premenopausal and one of my MOs suggested NO Lupron while the other MO said YES Lupron to stop ovaries from producing estrogen. yes...I have two MOs...one is a backup in case I don't like what the other one says. They communicate with each other as well.
I am scheduled for a Lupron shot on Tues but leaning towards no Lupron. I think my body has been through a lot with 2 surgeries, reconstruction and chemo. Not sure what I will end up choosing.
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Andrea, I didn't ice. For one thing, my MO has concerns about it, and for another, I have diabetes so I have to be careful with temperature extremes. I have moisturized my nails several times a day, used a tea tree anti-fungal treatment on my toenails every day (sometimes my fingernails as well), kept my nails trimmed, and worn socks to bed. So far, so good.
#13: I am grateful for many interesting things still to learn about.
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on the topic of tn needing radiation- I was told I wouldn't. I didn't have lymph node involvement. maybe I will talk with doc on Wednesday. I am feeling great after my taxol on Tuesday. Honestly I don't feel like I had anything done. this week I go in Wednesday for treatment so I can attend my sons kindergarten graduation ceremony on Tuesday. Hope everyone else is doing well.
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I'm very interested in everyone's info and opinions on radiation here, especially the ladies who have reoccured. I have a feeling my onc is going to leave it up to me since he says I am in that grey area...but with a positive node I think I want it. I have no plans for recon, so that's not a factor, and am seeing a lymph edema PT on monday to have a plan in place to head that off.
On the plus side, he says I get my port out exactly 3 weeks after last chemo which is July 17! I'm gonna make a paper chain and rip links off like a kid counting down to Christmas I'm so excited!
How's everyone feeling today? Has your throat funk cleared up, lynne?
Ginger, are you still in the hospital?
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At the airport heading to Illinois for AC #4. So glad I can almost say I am half done.
I'm TN too and although I met with a RO, they are predicting I won't need rads based on lack of nodes (as seen on u/s) and position. I will have scans in 3 weeks before tax/carbo and then meet with the whole team again...I think. So, I will have to ask about rads again.
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So I drink the Suja juice cold pressed juices - I haven't had any trouble but think I should not be drinking them? That's all my fruits and veggies?
Welcome Woodburns, though sorry you have to join. The women on this board are awesome!
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