Starting Chemo September 2015; join us!
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How many weeks after the first chemo did you feel time to buzz the hair, when it really started coming out so bad that it really showed? I still have my hair and am kicking the can down the road in going in to get it done.
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my hair started coming out day 13. Less than a week later I cut it off.
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Thanks ladies. So it sounds like chemo #2 next Tues will be the time frame as that's 14 for me. Maybe I'll see if my stylist will do me a favor and on Mon when he isn't normally working to come in early or late when no one is there to pretty much shave it. I don't think I can handle clumps like that along with who knows how I'll do with round 2. Round 1 has been great overall. Threw up twice and the head stuff for a total of 2 days but that's it. Seems from what I read here, doesn't mean it will be the same each round.
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My hair started falling out Day 13 after first treatment. I shaved it Day 17.
I wear my wig to church and meetings, events mostly when I care. Around the neighborhood for walks or just grocery shopping I wear a hat. I figure I don't know anyone so I don't care and I'm just a passing person...
I actually have gotten use to the wig and I get lots of compliments. Kinda nice....
Had second TC last week and faired pretty well. The biggest problem was constipation and trust me I won't let that happen again. Next time it;s warm prune juice in AM and laxative in PM.
All of you are in my prayers. Hope your next chemo goes well...or at least tolerable.
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Catching up with everyone. Seems like this week is a stuck in the muck week.
Lady in purple I was given Juven at the Wound center and my dietician told me I could continue to take it during Chemo but that stuff comes out to around $3 US dollars a dose so $6 a day. It tastes good and easy to take. I ordered L-Glutamine and Arginine from Amazon from a USA supplier but either chemo has messed up my taste buds or Its just not great. I can't have a lot of dairy but it goes down very easy in a dairy based protein drink. that is the easiest way to get enough L-Glutamine but even protein drinks are expensive. I admit my protein has slipped a lot My gut just can't digest the protein drinks and luckily my neuropathy with Taxotere has gone away . I have read that Taxol is much worse for this though.
My Mo was fine with B6 and B12 byt said something about avoiding Folic Acid in supplement form. Not sure why.
Southern I so feel the same way. My wig is crazy hot and I know women who wear them 8 hours a day. Also I bought some really nice clothes but my port and my wound are almost worse because I can only wear a collar shirt or a crew shirt to try to cover it up. I think I get more sympathy from the bandage than from the bald head which I hate. Especially if I wear a skirt and a scarf. Pity City with that one. GAG
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Arista, my hair started falling out on day 17. Probably half of my hair came out that day. On the fourth day, it quit. I got it cut really short on day 10, but not buzzed. During the few days before I got it cut short, the texture got weird. That made getting it cut easier because it was starting to not feel like my hair anymore. I still have a little bit left, which will probably leave after my first Taxol on Tuesday.
I HATE getting dressed for work. I have plenty of scarves, but not that match my work clothes. Plus I've had three weeks of the bulky compression bandaging from knuckle to armpit on one arm. I have exactly one sweater that fits over it without getting stretched out. No jackets.
With the compression bandaging, everyone I have any kind of conversation with asks me what happened. Is there anything sexier than, "the fluid can't drain out of my arm?" It may be time to start telling them about my soapbox derby accident a couple of years ago. I'm so tired of talking about cancer to strangersall the time. At least Pinktober is over.
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I hate the color pink and not cause it reminds many people of breast cancer. That and baby blue are the only 2 colors I have never owned in clothing and I have the skin tone to wear every color.
As for getting a buzz cut, if someone asks this month, say you did it in honor of the veterans! haha!
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I've never liked pink, either. My 15 year old was working a high school volleyball tournament last month. It was a breast cancer fundraiser. They were all forced to put these massive, sparkly, pink bows in their hair. She sent me a forlorn text, "why did you have to get a pink cancer?!" Her bow was extra special. But the picture is priceless. I'm thinking of blackmailing her with it
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Haha on the blackmail. I agree. Why do we have to have the pink one. I don't know what orange is but I'll trade colors with pink. If I had kids I wouldn't have any pink for girls or blue for boys. I'd go yellow for girl and green for boy. Actually nowadays it's not so pink and blue as it was back when. Thankfully mom doesn't care for pink either so I was never subjected to wearing it.
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Just woke up, a bit too early. Bracing (scared!) for round one of CEF(cytoxan-epirubicin-fluorouracil) this morning, round 4/6 overall. So glad my headcold cleared enough yesterday, that I got brave and went to the theater to see The Martian -- which was great
Took my mind off chemo worrying for a full two and a half hours. Just hoping the nurses get the iv into my vein on the first shot this time for a change. My first and third visits they didn't, and I broke down and sobbed near hysterically. In front of all the other patients and staff. (Yeah, I know, don't get so upset about something that hasn't even happened yet...0 -
Tessu - Good afternoon! I hope your CEF session went well and your nurse was a sure-shot with the IV. Keep us updated.
All - Wow, L-glutamine is very expensive at the Dana Farber-recommended level of 30 grams per day! I'm going to hold off and see how the first low-dose Taxol goes next week. I am taking B6 in the run-up to that infusion. Thanks for the thoughts, advice and resources.
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southern, I also struggle with the getting dressed - coordinating scarf with outfit, with earrings. I think I figured out that warm and cool colors look funny, so if it's warm colors I choose other warm colors & big gold earrings. Cool colors, cool color scarf and silver earrings. I tried to tie the scarves I usually wear around my neck because I already know what sweaters those go with. Eh, that's a lot of work & a bare neck. I also figured out only 1 thing can have a pattern. And I like solid scarves for the most part. And a solid brown scarf with ties that hang down, while it doesn't look like hair I feel like it gives that look to the face & the. I coordinate with other warm colors,
I returned to work & it was hard to face a large number of coworkers bald for the 1st time, but now it will be easier.
I keep explaining the getting dressed thing this way - it's like you just discovered you have legs, and now you have to figure out pants and matching when all your life you never did. Stupid, but I keep saying it, we do all of a sudden have to "dress" our head. :
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arista my hair started to fall out in clumps day 13. I had it buzzed day 17 after AC #2. You will know when you want it off. Your scalp will start to hurt, your hair will feel like it's pulling, and the shedding increases to clumps. I tried to only wash it every 3-4 days. But when it's starts to fall out when you turn your head and just move it's annoying and it gets everywhere. Like a dog molting fur all over. I was like I peed hair in every room and on every surface I touched. I had a short bob cut before. Hope this helps.
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Southern, the hair issue and work for me has been a real struggle too. One thing I did is start with halo (as I've mentioned, I don't have a wig), but had alternatives in my purse, and when it got too itchy, I ran into bathroom and changed to a different hat that covered more, with no halo. I even brought a hand mirror with me so I could do it in the privacy of the stall and then make sure it was at least straight before heading out to the bigger mirror. But it is hard. If people ask questions, just smile and say, 'I'm fine' unless you want to say more. I learned that most people are afraid to ask much. I got only one person who really tried to probe, and I just kept saying 'Im fine, thanks for your concern.' and she now treats me normally. Everyone else may be talking behind my back, but they aren't saying anything to me. and that is ok with me. I did tell my direct reports, and people I am close to. Interestingly, I found that there were some people I realized I wanted to have details, and my gut has been right, those folks have all been great and very supportive.
You are strong. You can do this. The advantage of going to work is that it gives your life some normalcy. For me, it has been tough, but worth it.
OTOH, I can't bring myself to go to the local grocery store. Weird, huh? I did fine shopping out of town, but I just can't bring myself to see the pity I know I will see in my favorite checker's eyes (it is a small town). But that's ok, the new normal around here is that hubby does the bulk of the grocery shopping.
Sending you love and hugs and we have your back. You can do this, as much or as little as you want.
HUGS!
Octogirl
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MinnesotaLisa good call with the b6. I priced the L-Glutamine on Amazon and see it's expensive. I am gonna wait to see how I do after this week. I think I read on the weekly taxol board that they sell it at whole foods. I wonder if a pill form of glucosamine would help. That a bit less money. So far I am doing ok on a b complex vitamin. I saw mo yesterday and he said DD taxol gets a bigger dose every 2 weeks 175 vs 80 on weekly taxol. He told me that weekly taxols get more taxol overall with 12 infusions that DD 4. He said there is more neuropathy with weekly when patients finish all 12. He did say again that if neuropathy gets too bad after this dose I can take an extra week off in between or we can evaluate and decide to not do #3 to just stop. I do have preexisting nerve damage in my left arm from herniated discs in my neck that has been aggravated on taxol with numbness in my thumb/hand but it gets better once I take the b vitamin. The one thing that is annoying is the heavy leg feeling on taxol. It's like I have sand bags for legs. Just slogging along when I climb stairs. It's mostly in the am/pm but still bothersome.
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Found an old thread from here of folks talking about L-Glutamine.
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Lots of posts to catch up on while I was getting infusion yesterday. Well I finally broke down in tears in the mo office. I guess it all hit me at once that it's been 6 months since I was diagnosed and I still am not done with this crap yet. I still have rads and a possible reduction surgery ahead. My sis (who is my awesome cancer buddy & is with me for all appts) and my fav mo nurse made me feel better and talked me down from the edge. I think I was also upset because I thought taxol would be easier but it was harder on me than AC. If not for the massive UTI I had plus the huge swelling/bloating with killer big C I think I would have felt better. I talked to my mo and he said we could lower the dex this round. For the first taxol I got 20 of dex to prevent a reaction and I was only getting 12.5 on AC. Crap no wonder I felt like a thanksgiving day balloon all swelled up with no poop to come out and had a hard time peeing. So they lowered the dex to 8 and this time I actually felt OK after infusion. Plus I sleep better last nite.The only annoying thing during infusion was the social worker came to talk to me during my premeds. Probably to make sure I hadn't climbed back into the crazy tree. I had just gotten the Benadry and was sleepy. I must have sounded like a babbling crying idiot who was senseless. I could barely put together sentences to talk. I just wanted to nod off. Thankfully my infusion nurse came over to hang the taxol and the social worker left. Mo also said I can call my oncology coordinator to have her schedule 1st appt with rad oncologist and also contact surgical oncologist to set up port removal surgery. Woo hoo I just may get deported before the end of the year.
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Seems L-G does more than just neuropathy.
Glutamine aids in diseases that effect the lining of the intestines. In addition, it can reverse some of the intestinal damage caused by anti-inflammatories, such as ibuprofen. Glutamine can protect the brain from ammonia toxicity. As it provides energy to the brain, it's a mood elevator, improves mental performance and helps your long and short term memory. Glutamine would be considered to be an essential supplement. For the bodybuilder, it promotes nutrient assimilation, regulates protein synthesis, stimulates growth-hormone production and enhances the immune system.
One gal said it helps with outbreak of mouth sores too.
Seems to be the gold from what I've been reading:
l-gluatamine (15 g 2x/day). Other people recommend 10 g 3x/day. I think the point is that 30g are protective. You will need to get the powder because the doses in the capsules are too low. Easy to mix in yogurt or smoothie. I am doing this every day.
Vitamin B-6 (100 mg 2x/day). My naturopath recommended the formulation pyroxidal5 phosphate
Vitamin B12 (1000 mcg 2x/day)
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Annie can we have a poop fairy funny this morning? I swear it's like you are our good luck charm.
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I'm so paranoid about SEs getting worse with AC, let alone harsher taxotere, that I'm getting the L-G powder today from GNC along with the Vit B-6 and Vit B12 for max benefits. You can't OD on the B Vits as they are water soluable.. I had a good first round of AC without this but having read so much about these 3 goodies I'm going to invest into hopefully all my rounds being pretty event free, esp the brain function. I'm alone so I need my brain!
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Lady in Purple- I do have a problem with my MO writing me off so easily. I admit, as a born scientist and resident "black sheep of the family", I tend to ask more questions and push back against things that don't make sense to me all the time. My parents were exasperated with my why questions from an early age. My MO says things that don't make sense to me but different sources of information give different types of information. If I weren't through AC#3 and had more options, I would jump ship. I am not the typical "AA" patient. I am well educated, and well entrenched in the healthcare system. I have had mammograms since 36. Due to a hard right turn to take care of my mom during her final illness, I have been unemployed on and off for a while. It has been hard for me- I feel like a failure and one of my ex-classmates and girlfriends called me a failure because I took time out of my life to take care of my mom. I have been trying to get back on track and "pow" breast cancer. I really lost my way for a while. Friends, boyfriend/fiancé ran away, relatives ran away - like I was contagious. My breast cancer is not triple negative but not typical Luminal A (but I don't understand why having Prg negative changes me from Luminal A to Luminal B since I am still HER -) but he won't answer that for me either. I, as my aunt who is also getting treated for breast cancer in her 70's, have been fastidious about getting our mammograms but didn't save us from this bad dream. I am 100 percent ER positive. She was an angry person before the breast cancer and now she just flames at anyone and will not talk to me at all.I haven't lost much of my hair but I fear it every day and will not touch it or move it around much. To be alone, with severe side effects, not much money, and a treatment team that "forgets" that I am hanging on by the skin of my teeth, has not been fun. I am suffering from extreme nausea and vomiting and the fatigue is overwhelming. My two hour drive home from my temp job through traffic has stretched to 3 because I have to stop and rest. I have pulled out of my car at a rest station by a cop because they thought I was drunk. I just felt so frustrated but luckily I kept it together and didn't "act up" and end up in jail. I blew into alcohol detector ( zero- I don't drink alcohol) and wasn't on anything- can't keep things down. But had to denigrate myself by showing a male cop my breast cancer scar. It just has been a hard road. Luckily I didn't go to jail I would have no one to call. But I did feel very exposed and I still feel somewhat depressed about my situation. I am trying to get ready to switch to my winter job- a lunch meeting with my bosses this week and next (not looking forward to lunch meeting with my tummy in knots).
I thank everyone for their support and love because I would not have been able to get through this without you guys. I feel so depressed about having to show my breast to a cop to keep from being arrested because just extreme fatigue and taking a nap in a rest area. Maybe I looked questionable? Got to go. The ultrasound test is now. Please pray it is just a cyst. I don't want to be a Stage IV.
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Praying for you Grey! One thing that may help in comfort a bit is bc doesn't go to the kidneys. The places it likes to met to are the bone, brain, liver and lung. So hang on to that thought to help keep yourself positive.
Did they give you anything to show you have a port placed? That would be what to show in the event some other dumb ass cop needs proof, which they shouldn't. Or maybe a copy of some official document about chemo appts-- so you don't feel like you have to expose yourself.
I didn't know they should be giving you a card you put in your wallet about having a port placed. They just gave me one after the sx so if I go to the airport and it dings, I can pull it out and say this is why.
Best wishes to you and I'll be thinking and praying hard for you! Hang in there! xo
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grey there are also medical alert bracelets for people who have had lymph node removal. I saw they sell them at my mo office. You could prob order them online too. We are all in this together. Hang tough. You are doing this and we are all proud of you.
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Shopgal you did not just say you are getting de-ported. Omg lmao! That's hilarious!
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May she visit us all today
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You only get classified Luminal B if you are HER 2 positive. Re-read your dx paperwork maybe you missed something. It goes by the estrogen receptors and the HER 2 more than the PR. Progesterone is aparently less understood with regards to BC than Estrogen.
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I too work full time though my office is casual, so I don't usually have a hard time figuring out what to wear. Pretty much jeans and a nice top everyday, sometimes a tunic, leggings and boots. I just want to be comfortable. I actually like wearing my wig. I wear it every day and whenever I go outside the house (though I did do some yard work outside on the weekend in just a cap). Since the weather has turned cooler I don't have a problem being hot in the wig anymore. I have a halo but I never wear it because I find it way too hot to wear a hat all day. The wig is cooler and more comfortable, plus I'm sure I'm used to it since I wear it a lot.
Grey - thinking of you today! Sending positive vibes your way for a good ultrasound result!
PS - WTH is the deal with getting a bad cold every cycle. I'm so sick of it. My nose is raw. ugh.
Wondering how I'm going to be feeing on Thanksgiving since I'm having round 4 on the Thursday before...won't be able to taste the food, I'm sure.
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I'm skipping Thanksgiving. I'm sending everyone to my Mother's and staying home alone to take a bloody nap in peace!
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That's a great idea, Annie!
Unfortunately for me, my son's 3rd birthday is that weekend. So my parents and coming for Thanksgiving (we are eating out this year! yay!) and then my inlaws arrive on Saturday and we're having the birthday party at a local play gym place. I'm kicking everybody out to drive back to their respective homes on Saturday evening so I can have Sunday to crash and recover from it all.
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