Unfortunately things are going downhill
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thinking of you today, wishing you all the best.
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Kandy, I just wanted to drop by and let you know that I'm keeping you close in my thoughts and prayers.
Also, I break into a big smile every time I scrolled by the photo of you and Michelle!!
Madelyn
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Thanks to all of you for supporting and holding me up in prayer. I go for the start of the second round of chemo tomorrow. I have now lost over half of my hair. My hair was really thick, so I can still pull it off even with that much gone. I'm thinking this next round will finish it off though. Something I really don't want to happen. My hair is my security blanket that I hide behind, I feel completely vulnerable without it. Mominator, TarheelMichelle is truly my angel. We are now texting regularly and are getting to know each other. Now we are friends outside of cancer. I really feel like God intended on us meeting and I'm very thankful and feel blessed. She really uplifts my spirits and I don't feel so alone. The funny thing is, I said I would never meet a stranger off the internet, another eat my words, lol. We are hoping to get together soon with our DH's. Hopefully they can be friends too, God knows my husband sure could use someone to talk to that understands too. I wish all you lovely ladies the best, keep your chins up and enjoy the moment. Love to all
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Kandy - My hair is my security blanket too. I don't know what I would do. Can you splurge on an awesome wig, or something?
Hang in there. If the drug is taking out your hair, the cancer is toast as well.
>Z<
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I still have the wig from the first time I had chemo. The bad thing for me is I find them so uncomfortable, and I'm paranoid that it will move. My head would itch from the wig, but when you try to scratch, everyone sees the hair move. I absolutely hated the whole situation the first time. Miserable with the wig, more miserable without it. I have never had even short hair with the exception of when it was growing back from chemo. I know in my situation the last thing I should be worried about is the way I look, but I do worry. I feel like going into hibernation. Guess I'm going to have to deal with it, I'm not ready to die. Take care everyone.
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Kandy - I think these things are very important. Do not minimize the effect of the stress of losing your hair. I have no idea how to help you, but I believe if you bring some loving attention to your hair situation the universe will soften this blow. Maybe there are better wigs? That don't move? Not a wig expert but praying that a good solution lands on your doorstep soon.
It's very important to feel comfortable, centered and confident through this ... you deserve not just to live but to live well and thrive.
>Z<
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Kandy, I remember being bald and skinny from the adjuvant chemo I was given for early stage bc, and it was definitely unsettling to be bald. I was wondering whether you may be aware that there are cold caps to help prevent baldness while being given chemo? Perhaps it might be something to discuss with your medical team.
Sending you a hug!
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Kandy - so sorry to hear about your new bout with chemo. I know how you feel about wigs, too - so uncomfortable!
I have so many soft knit hats now. Luckily, it's winter here, but I seriously don't leave the house without one. They make me feel safe and cozy. Hoping your treatment kicks ass and takes no prisoners. Wishing you strength and peace and wellness.
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Thanks for all of the replies. Bestbird, I did look on the web about doing the cold cap. It said it cost 500$ a month in rental. Now if I thought I was just doing this for a few month, I would jump on that. But hopefully it will work and I will be on it for a long time. I don't think I can pay that much per month with no end in sight. So I discarded that thought. I had chemo today, it went well. The PA was amazed that I still have so much hair. I told her my hair was really thick and each individual hair was thick therefore it was deceiving. She said the amount I have now is probably close to what most people have normally. But she said that it was still no indication of what was going to happen in the next couple weeks. Maybe I would be lucky but maybe not. Since I'm really not feeling like a lucky person I am not counting too much on it. So can someone explain to me in farther detail what happens with your fingernails? That bothers me too, I am a germ fanatic, if they look bad, I'm going to think germs. Oh boy, this just gets better and better doesn't it? So does everyone get a nail issue or just some? I'm praying for each and everyone of you. Treatment works and you are pain free. Enjoy the moment ladies
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Kandy,
I'm so sorry about your hair - I totally get the security feeling. I have always had thin hair but have totally lost it twice. Once with AC combo in 2007 and then again with Abraxane in 2014. Ugh!
My nails were fine on Abraxane - no issues at all. Hang in there! I'm praying this chemo destroys all those pesky cancer cells in your body!0 -
Kandy, I used cold caps for my second go around with this shitty disease and lost probably 75% anyway. I used elastagel, 4 caps, 35lbs+ of dry ice every 2 weeks. It was a lot of work with minimal results anyhow. Blow that wad of cash on something great for yourself or think of it as a road trip a month for your family. I was the queen of baseball caps with Tom Petty thin hair but to me it was better than another round with my itchy wig also. Try to hang in there and think of how much we tell our kids, spouse, loved ones it's what's inside that counts (yeah, I avoid mirrors still to this day.) It's a line of crap sometimes but at night there is attivan and ambien, during the day keep moving, planning, focus on others and other things the best you can. One day at a time sister. Though I'm listed as 3c at least one doctor referred to me as 4. I pray too they will fast lane our miracle drug to tame this beast and milk our lives for a long long long while... God bless.
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Oh sorry, forgot to mention icing your nails (even just putting into cold elastogel mittens taking in and out WORKED for me with Taxotere anyway - zero neuropathy, zero nails lost). You don't have to do them for the 4 hours after chemo to benefit either so cooling your nails and feet may be worth it. How long are your treatments? Mine were only a little over an hour and I'd rotate two sets of mittens/booties (these are only $40 - $50 set) and not precool my hands and feet nor do the post treatment stuff so it wasn't that bad. I even wore thin sock and thin gloves to keep that painful frozen feeling at bay. Just a thought.
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Kandy , I used a body glue called IT STAYS. Ordered on Amazon. Washes off with soap and water...just a soapy warm wash cloth when you take the wig off. I put a little strip in the front and back of my head .......and then it doesn't move when you scratch your head and it doesn't wiggle all around. Worked great until my hair was about 1 inch growing back. Then it pulled. I'm pretty tender, fair skinned and I didn't have any skin reaction at all.
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Thanks for the advice ladies. Y'all are awesome. Trying to keep my chin up.
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Kandy: When I was going thru chemo CT 6 years ago, my center always provided frozen mittens and socks for Texotere infusion. My onc also prescribed tee tree oil for nails 2 to 3 times a day. I found a bottle with a brush just like nail polish and faithfully applied everyday. My nails went thru 6 treatments remained intact. Another friend also swore to the power of tea tree oil for her nails when she went thru several different chemos for overian cancer.
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Hi Kandy, I know the feeling of losing one's hair. I find it annoying that they cannot find enough chemos to treat us that do not include losing hair. I am gearing up for my third round of hair loss. My hair used to be my pride and joy. Funnily enough, I had compliments on my 'hair' (wig) almost every day. I basically had 'great hair days' for about 9 months each time. It was made specifically for chemo patients - make sure you get that type of wig, and not the regular ones, as they are built to take into account more sensitive scalps (may not work for everyone). The wig should fit, so that it does not slide around - the chemo wigs have velcro pieces underneath to adjust the circumference. I can attest to them fitting well, as I had an incident with a bird with my first wig which proved how well those things stay: I went for a walk down by the beach one morning and noticed a bird started chirping and following me down the path. Well, I figured I was close to its nest or something and it was trying to distract me. Nope, it appears there was a bug in my hair/wig, which it had its eye on. The next thing I know, the bird is swooping down, trying to lunge at it at the back of my head. My natural reaction was to flip my torso, head, and 'hair' forward to get rid of the bird. In front of dozens of people picnicking along the path...Well, I got rid of the bird, then realized while I was still bent over at the waist what I had done. Hmm, wig is still on my head...I flipped my head back up and the wig was still in place! Phew! I brushed my hair down a bit and kept walking. So, if anyone caught it on their iphones, it did not include a woman losing her wig because of a bird going after a bug.
I do hold onto a section of my wig hair if it gets windy. It looks like I am keeping hair out of my face on a windy day. Perhaps go to a wig salon, if you haven't already, and talk to them about your concerns and have them fit you with a wig. They should also be able to it for you to suit your face shape. With both of my previous two wigs, everyone thought they were my actual hair. Also, if you are concerned about the wig slipping or falling off, buy a wig cap. They fit snugly on your scalp, and you can bobby-pin your wig to it. I did that with my second wig while I grew my hair out, as I was working, and did not want my colleagues to know what was going on. After my initial diagnosis, I told my hairdresser and that I was not happy about having short hair. His response was that he and I now had something to look forward to as it grew back: a bunch of new hairstyles at different lengths. Yes, I did have fun with that, so perhaps something for you to look forward to down the road. My third wig: probably something at shoulder length to match the current length of my hair.0 -
Okay. That is the best wig story every.
>Z<
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I do agree, that's the winner. Don't think anyone could beat that. I'm still laughing.
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Andkeep...So you think it's better to get a wig from a wig shop than one of those wig catalogs? Some of the ones in catalogs don't look too bad.
I'll be switching to a different chemo soon (going off xeloda after 9 mos.), so I need to get some options lined up. One person said to get 2 or 3 cheap wigs so I can have fun with different looks, but if they're itchy and don't fit right, what's the point? It may be better to spend a little more and get one that really fits well.
Human hair or synthetic? Any tips as to which looks better, grooms better?
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i heard human hair wigs are hard to take care of. I had a synthetic wig that looked very much like my own hair and most people were clueless. Very easy to care for, keeps its style ans shape.
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Hi Lita, I have shied away from wig catalogs, as I cannot tell what the wigs would look like on me without first ordering them, waiting, and trying them on, and possibly having to return them if they did not suit me, or I didn't like the fit. My cancer centre has a wig salon with stylists, so I book an appointment with them, and we try on a bunch of different wigs until I find one that I like and which suits me. They will then trim it if I want to customize the look (have not had a wig styled by them, as both suited me out of the box). One of the stylists told me that wig styles may look great on the mannequin head, but can look quite different on different people, as each person's face shape and length of neck dictates what looks good. With that said, I too am tempted to buy a few wigs from a catalog, especially if they are cheaper! I would say try out the catalogs - as long as you can return the wigs if you don't like them.
Human hair vs. synthetic: that is a personal choice. As Divine stated, they are more difficult to take care of, and you need to style them as you would regular hair and after washing, but, you could colour them if you wanted to. They are also more expensive. Synthetic wigs come with a 'pre-set' style so when you wash them, they dry back to their original style. Both of my previous wigs were synthetic. My thought was 'If I am losing my hair, I am not going to spend time styling a wig!' I wanted the 'bonus time' to do other stuff, given the situation. Also, with my first synthetic wigs, the wig shop warned me to stay away from extreme heat (camp fires, opening an oven door), as they can singe/melt. By the time I needed my second wig, I no longer had to worry about that, as the new material was heat proof, so look out for those types too. Also, some of the synthetic wigs can be styled with rollers/curling irons, as they are heat proof. That was the case with my second wig, but I never bothered, as I liked the original style.
Lastly, with wigs you can have lace front wigs for a natural-looking front hairline, and monofilament wigs with flesh-toned cap, so that it looks like your scalp is showing through your hair for a more natural look. Both my wigs were monofils, one without a lace front and one with. There are also 'hats with hair' - hair attached to the sides of a baseball cap/hat only, so that it looks like your hair is peaking out from under you hat, but the top of your head is actually only covered by the fabric of the hat. Possibly an option for people with more sensitive scalps.
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Thanks, Andkeep. There are a couple of wig shops within a 15 mile radius of me. I will check them out.
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Hi Kandy,
I've been sick for the last month (bad cold, flu, pneumonia, fractured ribs - probably from the coughing from the pneumonia - and now another cold! Hopefully this one will just be a run-of-the-mill cold though!), so haven't checked in here for awhile. I'm finally getting caught up. Just wanted to let you know that you are in my thoughts and prayers. I'm so sorry for your progression and sorry that you have to have chemo and all that that entails. I have high hopes for the Abraxane for you though - may it be just the thing to really knock things back again! I'm so glad to hear that there were no brain mets and that you and TarheelMichelle have become such good friends and that she has been such a blessing for you! I loved the picture of you two!
Hugs, Amy
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AmyJM I've been worried about you. Haven't seen you on these boards in ages! So happy to hear from you but not happy to hear all you're going through. I hope you get through this quickly.
From the other Amy
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Thanks for all of the advice, prayers and well wishes. I appreciate all of you checking in. Just a quick update. I went for chemo again yesterday finishing up my 2nd round. I get a week off then I will get chemo for 2 weeks and get scanned on the third week. Chemo went well yesterday and I seem to be tolerating it well. My hair is almost all gone and I'm very tired of shedding worse than a dog. I am going today to have the rest taken off. I ordered a wig last week and it came today. Hopefully I will like it better than my last one. Time will tell. Sure am dreading the no hair again. Even worse I found out yesterday that my tumor markers decided to double again this month. Now they are over 600. Great, did I lose my hair for nothing? MO said he was still hopeful and didn't want to change anything until I am scanned, that will tell him what is really going on. It seems like I just can't catch a break. I hope all of you are having better luck than me. Remember to enjoy the moment
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Kandy - Fingers crossed that the TM's are a flare reaction .... all those DEAD cancer cells in your blood stream. I know it happens with hormonals. Unfortunately no experience with chemo. I'd have a panic attack if all my hair fell out. You are holding together WELL.
thanks for checking in. I was just thinking about you.
>Z<
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Tumor flare does happen with chemo. At least it did for me. When I went off Tamoxifen, TMs were in the 1500s. A month after starting Taxol, they were at 2,600. It took two months for them to start going down. That was about 5 years ago, and I'm still here, doing well.
Never truly freak until you are scanned. TMs are a good tool, but the test doesn't differentiate between dead or living tumor cells. I'll bet those TMs start coming down, and that your scan will show decreased SUV activity in your active sites. You are ER/PR+, grade 3, a cohort that does very well with Taxol.
Hugs from NY.
Jennifer
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Thanks Jennifer, I needed to hear that. I will try to hold onto your words.
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Kandy, I am happy to hear that you are tolerating chemo well. I wish you had been able to keep your hair, but if the treatment works, it will be worth it, right? Just picture those cancer cells shrinking down to tiny lifeless little globs and disappearing along with your hair. Don't get too hung up on tumor markers right now. I have read many accounts of people who experienced spikes in TMs when the new treatments started working. I hope that when you have your scans, the results will be spectacular. We are all pulling for you. (((Hugs)))
Lynne
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Thinking about you Kandy. I'm with the others, cancer cells are dying but not without making a big stink first. Prayers -
Amy
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