August 2015 Chemo Group
Comments
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BlueFrog76 - Happy birthday, and I am sorry you're having a rough time. I hope this weekend is better for you. A do-over celebration is definitely in order.
Healthy thoughts to all.
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JenPam I think you meant me about the ice water. Yes, I took my hands and feet in and out of the ice water, maybe at 10-15 minute intervals, sometimes 5 minute intervals. I never had any issues regarding the coldness. The emergency room nurse told me that was something they do for burns. I don't know if it helped or not, but I never lost a nail or had any pain or anything. I also kept my nails trimmed short, no nail polish.
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Hi BlueFrog:-) my face got red-blotchy, dry and peeled too, mostly chin and sides of nose area. After it peeled, fresh, nice smooth new skin grew underneath like the chemo gave us a face peel! Had to keep it moisturized with gentle coconut oil- no chemically stuff.
Kate, you soldiered through first round much better than me. Awesome! Everyone's stories here keeping me motivated & feeling less "lost"
I look like Chernobyl hell, hair GONE except this funny Mohawk fuzzy stripe on top & back. Pubes falling out. I'm leaving the damn Mohawk just to be rebellious.
Think I got JenPam's 'tapeworm' and its making me eat stuff I'd normally avoid (yogurt ice cream? Dairy? Yuk!! Why did I eat that!!! I hate dairy...) I need more discipline:-/
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I'm 2 days post my first TC treatment and I feel like I've been beaten up. Not too much nausea, but my muscles on my back ache really badly. I also feel like my legs are extremely fatigued - if I walk upstairs it feels like I've done 100 squats at the gym. Anyone else have this feeling? Each leg feels like it weighs 50lbs.
My taste is off, but nothing too bad at the moment. The base and of my neck is quite painful as well
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SoCalGirl jumping in from March chemo. Yes, totally get where you are coming from. I frequently said my legs felt like they were encased in concrete, and my husband had to massage them all the time. Hang in there, it gets better once chemo ends. I feel mostly normal now, almost 3 months out.
You can get through it!
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Italychick - you described it perfectly! I'm glad to hear it gets better once this is over. I was getting worried that I would have this awful heavy feeling all the time so thank you for the encouragement
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How many rounds of chemo are you doing?
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I have finally decided to get on my desktop and actually write a true post. Typing on a touchscreen(tablet) sucks.
Gooseberry- I too have had setbacks due to an incision not healing right. I was on 2 rounds of keflex and when I stopped by the PS's office to pick up my pain med script, I had her assistant look at it (doc wasn't in), so she took pics and sent them to the doctor and while doing this setting me up to either have an I & D done (basically cut the old incision out and create a new one) or go to the outpatient surgery center that she was going to be at the day after my actual appt. to re-open it and replace my expander because they weren't sure what was going on. Well, the next day, the doctor looked at it and was able to do the I & D in the office and while doing this came across a seroma that she took care of (drains were already gone). Went on a 3rd round of keflex and then she added doxycycline (Extremely potent antibiotic that needs diflucan to go with it). After a month and a half wait for my surgery and now a month and a half wait to start chemo, I am finally getting it on the 27th. My PS also just filled my extenders for the first time this last Tues. She put in 60cc on each and the one that is causing grief, she took out approx 65cc of serous fluid. I COMPLETELY understand the frustration. I hope that if you are pushed back again, that you ask if an I & D is possible. Mine healed beautifully this time. Now if I could just get my body to quit filling the space on its own, everything would be peachy keen.
JenPam- Thank you for the mentioning the neupogen. I will be getting my AC every 2 weeks too, so I am definitely going to ask about it because I live an hour from the infusion center and that would help.
I am finally getting tired and I want to write more, but there is too much to catch up on in one post. Hopefully I can spend some time with my desktop tomorrow and write more. Also a HUGE thank you to everyone for being honest and no holds barred about SEs. I realize that we are all different, but it helps to see what I might be in for and I am thinking positive that the only one I will have is the fatigue and not much of it.
Take care everyone and will "see" everyone soon.
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thanks for answering JenPam but now I'm really going to have to ask my doctor. I'm on chemo every two weeks too and what I was told about about Neulasta (nothing about neupogen) is that I would normally only get it if my white blood cell count dropped if I was on a regular three week schedule. But since I'm on the two week schedule I get it proactively with every treatment.
It's funny that even though we all have slightly different diagnoses and need to take different drug combinations, even where they should seem to match there are discrepancies!
Another random question-did anyone's cancer change after the first dose? Before, I could feel mine but not see anything on my breast. Within a day, it felt softer and "less angry/hot" but today, it still feels that way but my skin is red and looks like it's grown. I'm going to the doctor on Monday for blood work, but was curious about everyone's experience.
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Thought I'd share my buzz picture. But first, here I was in St. Maarten in June right after my diagnosis & immediately before my BMX. Notice how happy I am to have found a laundromat.
And here I was last night holding my baby photos. I thought I'd try to imitate my four-month-old self. Uncanny resemblance, right? My kids always tease me about the egghead I had as a baby, but I think my head is more nicely shaped now after nearly 46 years. Today my DH and I are shopping in Georgetown (D.C.) for some cute hats, but I'm going to rock the buzz for a little while!
Anyone else want to share photos?
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Suzanne50: Looks like we're on the same treatment on the same timing cycle (sorry if I didn't notice this before). My 2nd round of TC is Tuesday. Although I'm not looking forward to the "cumulative" effects, I feel better equipped with knowledge and meds to avoid/counteract SE. Did you say what you're doing about your hair? Mine is falling out fairly significantly. I probably could wait longer but I'm going to buzz cut it on Monday and have my wig and head coverings ready to go. I've had a really great attitude about everything - but this hair thing has been really hard on me. I'm not vain at all - I think it's just the potential reaction from others that concerns me bc I have been living my life fully right through all this and don't want any reason to feel like I'm stopped in my tracks.
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JenPam: you look fantastic. Happy hat shopping! How old are your children? My 10 year old daughter is traumatized by the idea of me losing my hair. I know it will be character building for her in the long run.
It's funny, I fell off my bike when I was 12 and am pretty sure I have a good scar on my head. I thought I would never know for sure, but I guess will find out in the next couple weeks. I've always admired women who own their baldness, for whatever reason. Eager to see if I'm cut out to be one of those. 0 -
Wow, I feel for you Superius - your friends have some weird ways of supporting you. No wonder you're up and down.
Loved KateB79's recommendation of this website for family and friends on how to support us http://www.cancer.org/treatment/treatmentsandsidee... but of course, the ones who most need to read it are the ones who won't go there...
Here's a UK site that is very good on similar themes http://www.macmillan.org.uk/Cancerinformation/Ifso...
Sloan15 I will make that soup THANKS!
I have not told anyone at work that I'm going through this, only the human resources person and my line manager. I told one of two people and I got that 'gaze into your eyes and smile intently' reaction, or even hugging me in the middle of the office, so I thought I'm not sharing this with the whole bunch of them. I haven't told my mum either but mother in law knows (my mum, aged 90, would come and stay to 'help out' - nightmare). Families!
Someone told me you have to work towards a treat when on this poison. The reason I called myself MsBrompton is when I finish chemo I'm going to buy myself a new Brompton bike. You can fold them up and put them in your pocket. https://www.brompton.com
I like the pictures people post! Here's me, yesterday, cold-capping and watching a really bad Leonardo de Caprio movie. You can see the half-sized implant they put in on the left after my mastectomy. The surgeon is going to 'expand' it till the skin can take a normal sized implant. I may even get a new nipple for Christmas YEAY.
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MsBrompton Mutual friends of ours think we might be on the verge of "moving out of the Friend-Zone"
Sloan15 I can't believe you walked that much! I have muscle ache from the Neupogen, & I guess walking in my backyard didn't help - turning round & round = dizzy.
Today's day 6, round 2 of TC, & feeling much better than day 4! hope the worse is over (for this round at least). I have to ask the Dr if any side effects are accumulative.
In the hair department, I think I'm done shedding. I thought I would be Charlie Brown like my friend who is bald, but I'm more like Linus. & so far I am keeping my eye brows (Lord knows I do not know how to do make-up!)
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Hello all, This is my first time here. I have ILC and started chemo on August 10th. It last 7 long hours. I didn't have a port and after 2 veins collasped decided I will have a port by my next round which is 8/31. This is what my cocktail is made of aloxi, benadryl, pepcid, perjeta, herceptin, carboplatin, taxotere, and neulasta delivery kit. Whew, no wonder it took so long. I guess I came here to give and get support from people who know exactly what I am feeling.
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Sparklypink - I am doing the penguin cold caps. They are a bit of a pain - you have to change the caps every 30 minutes starting before your chemo starts (with the anti nauseous meds in IV) and continue 2 hours after chemo ends. And it is cold....super cold but you get used to it. But I have to say, so far so good, I haven't lost any hair on my head - just a few strands in my hairbrush. They have a 87% success rate (or something like that) but you can still have thinning. Will have to see how it goes. I did buy a wig so I am prepared. I am a 4th grade teacher and I didn't want to wake up one more with little hair so got myself a proper wig. I think the hair loss is hard to accept. It's not only the not having hair for the duration of the chemo but growing it back takes a long time. So I figured I would give these a try.
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Thanks for sharing your pictures MsBromton and JenPam. You look at peace with all this. I'm still a little freaked out... I went online and bought some sleeping turbans and scarfs today. YouTube has some pretty good links for wrapping scarfs.
@Italychick, Thanks for popping in and helping us all through this. I, too, felt like my limbs (arms) weighed 1000 pounds on day 4 of my chemo. I'm doing 4 rounds, and I'm scared about neuropathy.
@superius, the Linus effect--haha. So, you still have eyebrows? Oh, I hope I keep my eyebrows.... Regarding the walking, I think the walking really helps me with the SE's. I walk in the morning so I have energy the rest of the day, and I've just kept up that routine each day with chemo. I hope it continues to help.
Day 6 of TC (first of 4 sessions): I LOVE Emend. It's an IV anti-nausea drip before my treatment. I had no nausea at all the last 6 days!
I came across this link for the ACS Side Effects worksheet because I know my doctor is going to ask questions. Copy and paste into your browser:
http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf
Would anyone like more SIMPLE recipes or meal ideas? I know there is a recipe thread, but you guys are here...
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Sloan15 - did your dr also give you oral Emend for 3 days? or just in IV? Just curious. They gave me something in my IV before chemo started and then oral Emend starting day of treatment and 2 days following. I have to say I really wasn't nauseous at all.
I agree with walking or any kind of exercise you can do! It helps work the chemo through the system and helps me feel better physically and mentally. I believe it makes a huge difference.
I really wish we didn't have to go through this ladies but at least we know we aren't alone. I am gearing up for Chemo #2. I can do this. We can do this.....pretty soon this will just be a memory. That is what I keep telling myself.
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Sloan15, before chemo I talked to a 15 year stage 4 colon cancer survivor who has been on continuous chemo for ten years! She said four rounds are way more doable, it is typically rounds 5 and 6 that really get you. So since you are doing four rounds, fingers crossed you bounce back faster! My first four rounds were not that bad other than concrete legs, hair loss, funky mouth. Round 5 knocked me out. And here I am now, almost three months after chemo, and yesterday and today I killed two bike rides with long mileage and hill climbs. The body is an amazing thing, it recovers.
Be warned about eyebrows and eyelashes, mine fell out two months after chemo! But short little hairs started growing in as the others fell out. So I have eyebrows again, but short, stubby little lashes. Go to a makeup counter if it happens to you, and get training, that's what I did to minimize the "bald" look. Nobody could ever tell.
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Bluefrog, my kids all just had birthdays--daughter 29 (raised her from age 2 years 4 months with my DH, who was a single father with custody), daughter and son both 21 (twins), and daughter 17. They are all unbothered by the physical aspects (Mom has no breasts or hair), but I can understand it would be emotionally more difficult to go through these changes with a young child.
MsBrompton, you look great! Love seeing pictures.
Almost entirely bald today and loving it. I can wash my head in seconds. I had a date night with my DH and wore nothing on my head, and nobody cared (least of all me). I hope I keep my brows, though! I bought three hats...a beautiful gray felt cloche, a form-fitting soft dark gray hat with a bow detail on the side, and a tweed gray/dark gray newboy hat with a brim.
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Hello everyone! So I had my 1st chemo on Wednesday . It wasn't bad. It took around 4-5 hours. It didn't hurt. Couple of hours later i felt a little weard like drunk or hangover , I don't even know how to explain it. The next day was just fine, nothing bothered me. I took a train to go to the hospital to get the Naulesta shot . ( I live in New Yourk). I wasn't tired or anything. But then on Friday I felt so tired and in pain ( back pain). I didn't feel like talking or doing anything. I also have a problem with anxiaty , I take Xanax wich helps most of the time. I see some very strong and brave women manage to work during the chemo, I don't know how it is even possible !!! I just admire them. I thought ill do fine on chemo because of my age (38). But now I feel like I'm 100 years old.
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Ruska, I am two days ahead of you and days 4 and 5 were my hardest so far, days 6 and 7
less achy. I am still tired with little energy. Let's take each day at at time and maximize what's possible.
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SDCA76, thank you for the quick response, you are right we have to take each day at the time. I hope the time we have to be on chemo will pass fast....
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i am on my third day from my first round of chemo. I feel good except so weak. I am trying to determine if I am just being lazy or if it is legitimate. After reading your posts, I feel that I am normal. I just don't know how I am going to go to work. I can't concentrate on anything. Even typing this is hard! One day at a time e I guess....
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I know I have another 2-3 weeks until I loose my hair, but I wanted to be prepared so me and my daughter went for the wig shopping. I got pretty good one and not expensive. Once we got home I took a picture of myself in the wig , I wanted to send this picture trough the Facebook to a friend of mine who lives overseas but by mistake I sent it to my ex husband . Oh, God! I was so angry at myself! Thousand thoughts went trough my mind! What he is going to think? But... He is just a man. He didn't even noticed that my hair look different. All he said: " good pic".
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Ruska, are you on any oral steroid meds? Because when you stop taking them, you can feel as if you're crashing. I've only had two infusions, but both times I was fine on the actual chemo day & the next 1-2 days, but then the fatigue and nausea hit for a couple of days. Today, Sunday, is that day for me--I've been in bed a lot, though I forced myself to walk outside for 30 minutes (it was tough). I feel generally lousy but am trusting that I'll rebound within a day or two. I trust you'll be feeling much stronger in a short time! (((hugs)))
I hope you had fun wig shopping with your daughter. How old is she? OOPS on sending the pic out to the wrong person, but at least he responded appropriately.
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I don't take any steroids. And you were right I feel much better today. My daughter is 19. And this is the picture in my new wig
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Ruska you look great! Love these pictures.
We will all have up days and down days but we will all make it through this.
Welcome chemo newbies, hang in there.
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Ruska,
I love the wig! It's pretty and you look great in it. Sorry about the EX mishap. There's a reason why they're ex's!
I start my 1st cycle of chemo (AC) today.
I'm nervous. But it's nice reading how you felt and your symptoms and I'm not feeling so alone.
I Hope you have a great week.
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Hi, everyone-
I'm Sue... and a total newbie to these boards. I had a lumpectomy on a stage 1 tumor on July 6. Margins and lymph nodes were completely clear, but the tumor was found to be triple positive, so I'm on what I guess you'd call preventive chemo -- taxotere and carboplatin with herceptin. I started my chemo August 10, so I guess I'm on day 14... go to the MO today for my second checkup. Next round is next Monday.
It's a bit of a relief to read so many people say that the first round is the toughest due to not knowing how your body will react. I went in with a positive attitude ("it's an adventure!" "It's all preventive because they say right now I'm cancer free!") but wish I'd done more research (and found this board earlier!) about what to expect and how typical the metallic taste, smells, etc. are. After a few days I felt so disgusting and frustrated. The smell was on my clothes, bedding, seemingly anywhere I went. Lost about 5 pounds in the first week. The icky taste was almost gone and I was enjoying some fruits when bam! My blood tests came back with low counts and I had to cut out the fresh fruit and veggies. Then, some diarrhea. And despite the fact that I've been drinking a ton of water, rinsing my mouth several times a day, using a very soft brush, etc., I'm dealing with some inflammation or something on an area of my gums that has receded (and sadly, I have a fear of dentists that kept me from getting the receded area from getting checked pre-chemo -- none of my docs mentioned that would be a wise thing to do!). When it got too annoying to handle over the weekend, I called the on-call oncologist at my practice; he prescribed mouthwash that's helped a bit, but I am kind of dreading what my MO will say when she sees the inside of my mouth (will I have to stop chemo and deal with oral surgery???). I assume the problem is just capitalizing on the fact my blood counts have been low, and it's not so unusual, but there's still the shame. And wondering what new Pandora's box this will open up.
Haven't lost my hair yet but am seeing an increase in the typical "few strands" coming out in the shower. Thinking of taking the plunge this week and getting my head shaved, as I have some turban caps ready to go.
Meanwhile, I haven't told too many people about the situation. I don't want a lot of pity, hovering, etc. (no pink ribbons!) and frankly don't have the patience right now to do what I'd normally do - smile, thank the hoverers and let it all roll off my back. I'm a freelancer working from home for the most part, so I have that working for me, but my boyfriend and I are also figuring out how to deal with certain family members, folks we do volunteer work with, etc. Between us, we have a few obligations we may have to let slip for a few months due to my treatment and the uncertainty of how good I'll feel on any given day. Once the hair goes, I guess I'll really have to deal with it, and I'd like to think I can just stand tall and handle the reactions, but, well, I just don't know.
Wow - that was more than I anticipated writing this morning. Thanks for listening!
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