Starting chemo February 2018
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deb- I was so hoping you were done with the diarrhea. I would definitely bug your MO before it's out of hand again. There has to be a solution. I agree with moth about a possible lactose intolerance. Chemo can cause lactose intolerance for people who normally digest milk products just fine. I was having gas pain and upset stomach after round one and the Dr told me to try lactaid with my dairy, as I was craving cheese all of the time and didn’t want to cut it entirely.
Indahood- so sorry you can’t count on your friends during this tough time. It sucks how so many people offer to help, but don’t really follow through. I know people mean well and are busy with their own lives, but this is the time when they really show their friendship. It’s easy to be a good friend when things are going well.... I think I just made myself depressed.
I wish coconut water worked for me. Ever since chemo began, all sweets taste horrible, even chocolate dammit. I have it in the fridge, but doesn’t work for me. Sour is tolerable. Maybe because most things tastes sour or flavorless anyways . Grrrr
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Hello again ladies.
I met my Physician Oncologist today and was very unimpressed (he was almost an hour late and I did not get a good vibe). I'm in Canada so I may be stuck with him. He did prescribe an anti heartburn medication in case I need it (even though it's almost resolved and the one tum's I took worked really well!).
I was able to do some house cleaning and take the dog for a nice 45 minute walk. I go for my second infusion on Tuesday. After the first round, I felt fine for first two days before "crashing". Very fatigued and flu-like symptoms for about 4-5 days before bouncing back again. Filgrastim gave me some aches and pains yesterday but otherwise it's been tolerable.
Monday they'll try and do a second attempt at a PICC and if it's a no go, I'm scheduled for a port on Friday. Worried I'll be feeling my worst by Friday and have to face the port procedure.. : (
No hair loss yet but I'm sure it's coming. I have yet to go wig shopping.
Moth, I noticed a few posts back that you were drinking green tea. I've been doing organic white tea (higher even than green in antioxidants EGCG than the green) since being diagnosed. However, I think we're supposed to avoid during chemo because it might counteract.
I hope everyone has a restful, side-effect free week-end!
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Mom of two - oh you're right! I saw that it's good for cancer patients but not during chemo. Thx for that. I'm still having a cup of coffee in the morning - I really should wean myself but i get headaches.
btw, the list for foods to help/hinder adriamycin is here http://foodforbreastcancer.com/articles/breast-can...Bummer about your oncologist. I've been happy with mine - even though my first MO had to take sudden medical leave and now I'm being cared for by someone covering her patients. I have heard other people in BC did get MOs changed when they really didn't feel confident or respected so if it continues to suck, maybe check out the provincial boards for some recommendations?
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Thanks for the list moth! It's been so hard figuring out what to eat/drink. From pre chemo antioxidant overload to none during chemo.
I was a coffee drinker too pre diagnosis...I gave it up but really miss it. I did develop in its place an appreciation for all kinds of tea! I've been doing chamomile and the occasional black during chemo...hope those are ok!
I might ask my MO's nurse about changing PO.. I'll wait and see at this point. I think he's mainly there to deal with any chemo side effects. It's funny because I checked him out on rate your Md and the reviews were consistent with my impression.
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I have been trying so hard not to burn out friends. We've only had the kinder picked up from school twice, but one friend has watched the baby at least 10 times for me. There were just so many appointments at the beginning, and we are trying to keep my husband at work as much as we can.
A co-worker brought us dinner last Saturday and stayed just under an hour, it was perfect. A friend said they would bring dinner one night next week. Childcare is the one concrete thing that costs my sahm friends nothing to give, but is priceless. My husband's aunts got together and got a grocery store gift card for us, which is huge. We work opposite shifts and I am retail no benefits, so taking a few days off after while still watching my own toddler is so necessary. I couldn't wake up at 6:30 and get out of work at 10pm the week of infusion.
It is so hard to ask for concrete help when we are used to handling our stuff as adults. But also, flakey friends drive me nuts! Call, text, reschedule or cancel, but please don't leave me hanging.
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deb-my jon renau julianne wig came today. I love it. I went with the light brown with highlights. I'm taking it to my hairdresser tomorrow afternoon to have her style it a little bit. The wig looks so natural. It took a lot of shopping on different sites to finally get it at $200 with a discount. Thanks so much for sharing your wig photo with all of us. I also found a clearance wig for $40 and it's messy look ; Which works perfect for my everyday life. Because my natural hair always looks a little messy. The wigs came just in time. Because this evening my hair is coming out in huge clumps. Tomorrow I think I'm going to have my head shaved. Even though my head is still covered with hair, its thinned out a lot. If I brush my hair now I would probably lose 90% of it. LOL Its time to say goodby to my hair. And it's strange. When I had my surgery I went to the hospital alone. I I drove myself back and forth to both rounds of my chemo treatments. Yet I'm taking a friend with me when I have my head shaved. I'm not sure how I'm going to react. From reading so many of your posts it appears that the majority of women struggle with the loss of hair. I just figured if I'm going to have a meltdown I'm not doing it alone in a public place. I'm also hoping that my friend doesn't have a meltdown. I don't plan on wearing a wig when I'm home just when I'm at work or a few social occasions. I remember one of you posting about being stared and laughed at by adults. I guess once we lose our hair and choose bald or scarves then it's more difficult to maintain our privacy. Some people don't care. who knows and feels better when they share. I do struggle with privacy issues. I'm very careful about who I share my cancer diagnosis with . Most of my colleagues do not know I have cancer and that I'm receiving chemo. I have shared with my friends but I do not feel a need to share with my colleagues or acquaintances. I know, . we can use being stared and laughed at as a teaching tool. But quite frankly there are times that some of us arent going to feel like teaching. If I don't feel like sharing my story I would hope that the person who approached me would graciously leave. or change the subject if I kindly tell them I do not feel like talking about my cancer. I do appreciate people's kindness and good intentions. A few of the reasons I love this thread is because we share our experiences and. offer encouragement and knowledge to help one another through this journey.
I had round 2 TCHP. It took less than 7 hours today as compared to 10 hours 3 weeks ago. As soon as I received the Benadryl IV I went to sleep I woke up 15 minutes before my chemo was finished. So I'm a little hyper this evening from the steroids. But no other side effects. I'm keeping my fingers crossed. And I'm keeping all of you in my thoughts who are really having a tough time with the side effects. With chemo we never know from day to day what's going to happen. I do know I have rambled enough. Day one of chemo the steroids leave me very hyperactive. This could be a long night.
CBOK-i love your wig. You look great. It looks natural.
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Thanks guys for listening to me earlier, trying to get the D meds balanced is tough afraid I'll end up constipated, no win situation. I don't consume much dairy, some cheese in Mac and cheese occasionally, no milk or really any other dairy. Hope you're all having a nice weekend, I work tomorrow and am quite busy so wish me luck 😊
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I think my dh might clipper the rest of my left over silly hairs tonight with the little beard trimming thing on his electric razor. We'll clean it with alcohol and not go to the skin. It will take a while I guess but that's ok. I don't feel like going out to get it done and the only big clippers I have are for my dogs & I can't imagine how much cleaning I'd have to do to get those sterile enough....
I haven't ordered a wig and wasn't planning to but then I saw a really cute rooted blue one and now i'm sort of coveting it. https://cysterwigs.com/products/evanna-by-rene-of-...I have no problem telling anyone & everyone about the cancer. I discovered I'm like a super sharer lol. I don't mind sympathy or support & I've only had a few stupid comments. I'm working on remembering to laugh & say "Did you just say that out loud? Why would you say that? Rewind that and say something else, ok?" for those moments.
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I love that wig Moth!
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moth-your wig is cute. I had to laugh when you said you were a super sharer. I am most definitely not a super sharer about my cancer. But ask me about my cats and dogs, watch out. I won't shut up. Too much sharing. And I guarantee any person who ask to see pictures of my pets will regret it. I will whip out my cell phone and won't stop until their eyes start glazing over. With 7 dogs and 3 cats there are a lot of photos. LOL.
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lol jo, I'm a super sharer about pets too. I used to have 3 big dogs & a cat & a lot of fancy rats. Down to 1 dog & currently only 2 ratties. My house feels empty
I'm going to think about that wig. I saw another lilac one that is longer & that one is super tempting too. Suddenly I'm turning into a manic virtual wig shopper. It's probably the steroids. I should stop online shopping while under the influence...
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moth- I've never even thought about wigs until I saw photos of deb snd cbok wigs. I ordered 3 wigs when I saw their cute wigs. I went to one of their recommended online wigoutlet. I end up buying the wig Deb had chosen. I decided to send one of the wigs back. You are right about the steroids. As of right now, I have a new rule no more online shopping the first 2 to 3 days after chemo. No more wig shopping.
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Hi Everyone!
I've been following this thread for weeks and decided to join in now. I started 6 rounds of T+C on Feb 26th. I'm now dealing dealing with severe Neutropenia 0.0% and a WBC of 1.4, my insurance company didn't believe i was at a high enough risk to warrant getting the neulasta shot. So, now I'm sequestered in my house and been put on Levaquin to try and protect me from some random bug or infection.
I was wondering how you all dealt with the isolation or have you had to? I am a nurse and a busy mom and now having to hand over the reins to get things done is weighing heavily on me. I've been able to deal with most of the side effects, though losing the taste in my mouth has been the hardest this far. My hair has started to fall out and I'm going to shave it off on Wednesday. Decided I would rather take it than letting the drugs do it!
Reading your posts are awesome and helpful! Power and Strength to you ALL!0 -
Hi Amie03. Sorry to hear about your low blood counts. We started chemo almost the same day you and I. I was prescribed the daily filgrastim shot (thankfully my hubby, my rock, obliges!) and it seems to have worked well for me. Hopefully you'll have something like it for the next round.
As far as having to ask for help, I can relate... it's hard for us moms to not be able to do it all for our families. But you'll bounce back. Just remember it's temporary. I pass the time watching some good tv series or movies....the more addictive tv, the better...we have an excuse to binge watch, right?! When I feel good, going out to walk my dog does wonders... physically and mentally.
Hugs to you...you can do this! We can do this!!
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Hi ladies, I haven’t checked in in awhile, but have had a fairly good week (today is day 11 since my first TCHP). The fatigue and nausea have lifted and now I’m dealing with some skin issues like a rash on my hands and oh my gosh my chin has broken out worse than I’ve ever seen my teen and tween kids’ skin. I went through two of my doctors before I found one who would give me a prescription blemish medicine. I mean this whole process has made me lose so much dignity, do I also need to walk around looking like a pubescent? I also have myself a raging case of bv that the onco office won’t touch- so I had to head to my PCP for a pelvic exam yesterday, which involved being treated like a celebrity and whisked into an extra squeaky clean room immediately upon arrival, and leaving with a mask in place because “there is a lot of sick people here today”. Today I am still waiting on results and the requisite prescription (but I did leave triumphantly with my acne script), and taking my temp hourly to make sure this thing doesn’t try to leave its home and head elsewhere in my body- if that’s even possible?!
I am trying to save my hair by cold capping and between not being sure that it’ll even work, all the work and expense it is, and having to go so long between washing it (plus not being able to cut, color, style it for months) I’m kind of second guessing myself. All your wigs look so cute!!! Maybe I should go that route and then have a hair do-over when this is all done. But I got my whole family involved in cold capping, and it gives my boyfriend something to do during infusion days other than pace the halls. I guess we are committed now.
I “came out” about my cancer to a wider audience last week. I’ve been trying to hold out a little because my brother-in-law and his wife haven’t been told- the day I was going to tell them I saw on Facebook that they had just embarked on a long vacation, and I am not going to ruin that. So I’m still waiting for them to return, in the meantime I’ve been filling in many other people in my life. This is especially weighty news for our family, as this is the brother-in-law and sister-in-law that my late husband and I chose to have custody of our children should anything happen to us. Sadly my husband passed away in a car accident 5 years ago (we were separated at the time, but the shock and grief was still unimaginable), leaving me a single (only) parent, now with a cancer diagnosis. Almost too much sadness for one household, and I’m still trying to sort out any kind of meaning or message in all this. So now I’m finally get to the business of telling everyone, and I’m also a sharer, but a cautious one. I’m mostly trying to guard myself and my kids against pity, because of the aforementioned events in our lives. I’ve found that all of my friends have dived right in with support, and are not scared away, but there are those acquaintances who cannot even meet my eye, as if even thinking about my situation is too much for them. And I can’t stand to be pitied so I hold my head up high. All in all I don’t regret sharing because the outpouring of love, support, gifts, food, etc is more uplifting than I could have imagined. Yes there are those that promised help and have ghosted me, those that just don’t get it and expect me to do things as normal (watch their kids, meet them out at social events: really??!!) but all in all the love and understanding I’ve gotten back have made sharing worth it.
I hope everyone has a great weekend, love and hugsto you all.
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Amie, glad you joined us!
I had febrile neutropenia last week, day 8 after first infusion. My neutrophils were also essentially 0 and with the high fever I spiked I had to be hospitalized for IV antibiotics for 4 nights before they let me go home on oral abx.
I spent the following week at home except for daily outings to the lab for blood work. No stores, nowhere else. When I went to the lab I was masked, used hand sanitizer constantly, sat far away from anyone else, changed clothes when I got home.As a nurse you'll be familiar with contact precautions - use them.
I made several corners of the house which are essentially mine only. One bathroom, one couch, one table and chair. All kitchen surfaces like handles, knobs, fridge handles etc + all doorknobs and light-switches & the tv remotes, my phone, my laptop all get clorox wiped daily. My kids are college aged and living with us so they've been a great help with cleaning and meals. Someone cleans my bathroom for me & someone else cleans the whole kitchen every evening. Hugs only from the back. If anyone even *thinks* they might be coming down with something, they mask in the house and stay away from me & my food containers etc. Tons of hand washing for everyone.I have no issue getting my family to do stuff for me. Our WonderWoman energies have to ALL go towards being healthy and strong and fighting cancer - not cleaning or cooking or running errands. It's all about priorities now. Cancer comes first - it's just a few months but I think we need to focus on ourselves & give our body every opportunity to heal itself. Fighting cancer is doing enough.
I spend my time on Netflix (binge watch a silly series), these boards, reading, chatting with people online in other forums, doing yoga, going for a walk outside when I had strength.oh & just fyi, I couldn't shave my head until neutrophils were over 1.0 because of the risk of razor burn, cut etc and infection....
hugs!
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Hi Amie and welcome to the group. I agree that the isolation is so hard, especially when the side effects start to taper off and you are feeling better, but you just know the counts are still too low to join society. I think the thought of being neutropenic and all that that implies is enough to make me very determined to protect myself by withdrawing from my “normal” life. It’s just too much to risk, so the sacrifice of changing my life so drastically is suddenly not so hard. I’m also very lucky in that my mom has come from out of state to stay with me to help me- shopping, errand running, getting my kids places, cooking and cleaning when I’m not feeling up to it. And the other intangible thing that she has provided to me is company. She’s here to talk, or if I don’t feel up to it just having her nearby is still a comfort. Plus my kids are older (16 and 11) so they are starting to be busy with their own activites and provide a distraction for me, and I have a boyfriend who is around on the weekends and is also very busy and chatty. Friends check in with calls and texts. It’s really just during the week when the kids are at school that I get super bored. Then I watch lots of HGTV, try to find something on Netflix, read, watch documentaries that interest me, read and post on this board. I still really mourn for my old independent and very social life, but I’m trying to keep in mind that these are special circumstances and it won’t be forever. I hope you find the support you need and the courage to accept it.
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oh my gosh, I had the Nuelasta injector thing. I don't even know what it costs and I didn't know insurance could deny it. I haven't even gotten my eob from 3 weeks ago and Monday is #2. I have been living life like normal; kinder washes her hands when she gets off the bus.
The acne does suck, it is my shoulders, neck, and halfway up my head.
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Welcome Amie- so frustrating about your insurance, hopefully now they will approve it! and busy mom thing, I just feel to crappy to care during these post chemo days. I luckily gave my husband home so he takes the reigns , gets up with kids, feeds them and all that while I rest and hide about half the day. My middle is 3 and he just came down with a cold and I feel so anxious about catching it and at the same time guilty about turning him away from hugs. Momguilt:(
22fight- I'm sorry to hear what you had to entail, I'm glad ur mom is there to help you though and ur older kids sound great! Netflix has been great.. I need a good new corny show tho..
I'm day 2 of my 2nd chemo, doing ok.. tired, queezy, slightly achy but not as bad.. hoping it holds off.i was at the infusion center till 9 on thurs, damn cold capping adds so much time! Emotionally I'm ok, but losing a good amt of hair that I didn't expect fully bc of capping, so just taking deep breaths, bought some cute hats and que sera sera. ❤
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Hi all, just checking in. Welcome new people! Feeling much better yesterday and today Day 13 and 14 after treatment. Long walks in warmer spring time weather. So hopefully I can make the best of this week before round 3 starts Friday. Wishing you all the best.
DEBMISTO, may the dreaded D Disappear.
MOTH I really like the wig and the colour is fabulous.
MOMOFTWO I'm in Canada too (Alberta) and asked my nurse navigator to advise me on what to do if I didn't like my oncologist and she said, just ask for another. It's like getting a second opinion. You'll be with your MO for a very long time not just for the time of your treatment. They kinda become your Cancer doctors for years to come so I think, get one you like.
AMIE: Welcome to the group.
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Thank you ALL for the LOVE! So sweet to hear the encouragement! Thanks for all the input and suggestions! I guess the hardest part for me is that I can't work during all of this and I'm so used to be the care giver and not necessarily the care "taker"! I think that's true for ALL women to some extent! I'm hoping to get Neulasta the next round which is next week, so won't need to be quite so sequestered!
My hubby is now sick (ugh) and basically thinks he's dying! I told him NO, you get me sick and I'm the one who will be! He's been relegated to the back corner of the house and can't come out without a mask and gloves....I'm making him carry around a tub of Clorox wipes and he has to wipe every surface he touches! hehe!
Much LOVE to you ALL. Women are AMAZING!
Hugs,
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indahood, thanks for asking your nurse about my oncologist! I think I will ask for a different one then! He's what they call the physician oncologist..he'll see me during chemo for symptom management.
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Hello everyone, I have been in the hospital since Friday with Nuetropenia. I was feeling awful and spiked a fever. Doctor had me come in for blood test and white count was .5 and I had the nulasta pod. Getting better count is up to 3.7 but kept spiking a fever can not go home until I am fever free for 24 hours.
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oh no AMBurt, sorry to hear. Glad your counts are up. Hope they id the source of your infection and your fever comes down ASAP!
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AMBurt I hope your counts keep rising, you shake that fever, and you can go home soon!
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Amburt- sorry to hear that you are in the hospital. Get better quickly and get back home.
Amie- big welcome to this awesome group of women
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Amburt- thinking of you, hope fever stays away💙
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I just have to pop on here and vent my struggles this weekend: I mentioned before that I was broken out like a teenager and had to ask two doctors before getting an acne script. I went to pick it up and found out that it has been blocked by my insurance company. I can’t believe they won’t cover it. I still would have just paid for it, but then I found out the cost is $467.00. That is not a mistake ladies, it costs nearly 500 dollars for a little tube of acne cream. I guess I better get used to my new face.
Next issue is on my lower half: the results from my pelvic exam were negative for all the things- bacterial or fungal. Good news, right? Except now there is nothing to treat and no relief in sight. Guys, this might be tmi but Lord does it hurt whenever I have to use the bathroom. The onco said “sometimes chemo can cause irritation without an infection”. So... just like we get the mouth and nose sores, this can happen in our vajayjay as well. Other than these words of wisdom he really can’t offer me any other help- apparently this is not so common, or he won’t admit to it, lol. The nurse practicioner who did the exam sent me an email and let me know that even though it was all negative she wanted me to start on a three day treatment of antifungal cream. I’m not sure how this will help an infection that doesn’t exist, but I’m willing to to try ANYTHING right now. I made up my mind to use the cream anyway, and wouldn’t you know it my pharmacy has RUN OUT of this medicine. Whaaaah! Fire up above and now fire down below!
I’m sure this too shall pass, and I’m trying to use humor to get by so I don’t feel too sorry for myself. I really hope the side effects from chemo don’t assault anybody else’s personal space, the normal SE’s are quite enough to deal with, thank you.
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22fightfor - Oh no, bummer about the acne cream being so stupidly expensive. Can you try just some otc stuff like from Paula's Choice? Their products are very good and effective ime.
re your vaginal soreness - ouch ouch ouch. I hope you can find another pharmacy with the cream in stock asap. Perhaps it will provide some barrier and restore a balance even if you didn't test positive for fungal infection.
Also I found this link for you - - the response from someone called Lillyanc1 (near the bottom) sounds legit & you might try some of those on your own & bring up the Rx options with your doctor. (maybe a derm or a gynecologist referral might be in order?) https://www.caring.com/questions/mouth-and-vaginal...We shouldn't need to suffer more than we already are. I hope you find a good solution soon!
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When my husband and son return from their hike, they will shave my head for me. This part of the whole breast cancer adventure has been the toughest for me by far. I have been putting off the inevitable for too many days now. I thought about having them leave about 1/2-inch of hair on my head. However, I just brushed my hair and filled up the bathroom basin with it. So if I leave a half-inch of growth on my head, it will simply fall out into my cute little pink cotton beanie that is waiting for me. So I might as well bite the bullet and have them shave it all off and be done with it. I can't believe this is happening.
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