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Greetings, fellow travelers,
Hillary and Twink -- I am having problems with my wig(s), too. I CANNOT wear the nylon skull cap because it constricts so much that in an hour or less I want to SCREAM because it has given me a SCREAMING headache. Without it, it feels like my bald head is being irritated, and I don't know how to resolve it because I can't go bald even if I wanted to because -- see below --
Question for everyone -- Does anyone have or has anyone had red bumps like blemishes all over their scalp? My DH says they look similar to ingrown hairs but I don't have any hair anymore. I don't know if they are a side effect of chemo, or my wig, or ... ???????
Leah and Hillary -- Yes, yes, yes, if at all possible find a counselor who specializes in cancer. Mine knows all about breast cancer, treatments, side effects, etc. -- can you imagine how much precious counseling time I would use up if I had to explain all these things to her as they came up?
Theresa and Scott -- I was born in Michigan, lived in Romulus and Belleville areas before moving to California when I was 6. I visited many years but always during summer vacation, except once I went in the Fall to see the leaves turn. I rode with four of my aunts to UP and the autumn beauty was breathtaking, which was fortunate because something had to make up for having to listen to the almost constant bickering of the four sisters all the way up and all the way back. It really was worth it.
Steph (from March) -- I felt similarly. After the initial tears with the diagnosis, I felt like I wasn't able to connect emotionally with what I was going through. I felt like a robot on automatic, which didn't feel like me.
Tired now, bath, then bed, and may we all have good dreams tonight... xoxo Sybil0 -
I bought a Jaquelynn wig, which has a lacy scalp thing- you are supposed to wear it right on your head, and your bad scalp shows through and looks like a real scalp. Mine is quite comfortable, though I wear the back tab looser than the hairdresser set it. I have it on about 12 hours/day, and I admit it is a relief to take it off. Try au naturel?
Thanks for the thrush recommendation. There was some discussion on Thursday's checkup about whether it could be or not, since I have a really sore throat. So I will fill the prescription they gave me "just in case". Thanks- I did not make the connection!
Snow again expected here in MA this evening... ok, I am ready for Spring!
Hope you all have a good weekend!0 -
Hi Leah! I'm glad you checked. Mine didnt look that bad either, but as soon as I used the mouthwash, I could tell by the tingling it was a good choice. It cleared up in under 2 days. It's appropriately named.
My two new wigs sound like yours. I thought my first one was comfortable, but I wore one of the new ones last nite and it's a big difference. I too tho, whip them off as soon as I walk in the door:)
Catherine, wasnt it amazing how far we've come from those early posts! I'm glad to see folks like Steph follow our threads and learn from us. It's almost hard to remember some of those early thoughts.
Well, supposed to rain here all day today, and I'm still secretly glad. Eaiser to be a couch potato!
Have a great day all:)0 -
Just a note to let you know that round #3 has not been too bad. yesterday I spent a good deal of the time on the couch and did have some nausea but not like the last two rounds. Today I am up and planning on going out for a walk before it rains. I may be speaking too soon but I hope today will be better. I am really tired of all this nausea. Speaking of which, tired is the one side effect that never seems to go away.
Leah, I have one of those lace wigs too that you can see the scalp with. Funny how many people think I just got a bit of a change to my haircut. But like everyone else, it comes off the minute I leave work. Sometimes in the car because I can't wait.
Catherine, lovely to hear of the flowers, your walks and the cooking.
I am so praying the nausea will be less. Have a great weekend all!!!
Karen0 -
Oh Catherine, I could feel your sunny day and energy, smell the wild violets in your neighborhood, taste the salmon souffle you had for dinner last night and see the look of delight on your face as it went poof! We have come a long way baby and I too love this group. Hugs & Kisses, have a great day, Marsha
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I hope you gals don't mind me still posting here even though I quit chemo after one dose. I wonder everyday how all of you are getting along with your treatments and pray you are getting through it all without too many side effects.
I think my hair is starting to come back, I can feel stubbies! I still have that wispy hair you saw in my pics and oddly its all blond now, I'm normally a brunette. Can't quite tell what color the stubbies are but I sure can feel them.
Catherine I too love to garden, I put in 15 large beds around the house and am watching what is bursting into bloom daily. It was so odd to watch how our grass greened up fully in one weeks time and now it looks like it already needs mowing! I can't believe just how fast my irises are springing up, one is about to burst into bloom. I haven't gotten out there to work in the gardens because the allergies are bad now too for me. I have to limit myself to good days to work in the beds and as it is my back is still giving me trouble from when it went out on me as I dealt with the chemo. My peach trees were just covered in blooms this year and for once a freeze didn't get to some of them so expect them to be heavy with peaches this summer. It is rejunvinating to watch the gardens and see the new blooms and feel the warm winds blowing.
Piper, know what you mean about needing to get away for awhile, we have 3 trips planned this summer. Son's graduation from Marine boot camp in CA and I've never been to CA in my life and always wanted to go there. His grad date has just been delayed due to having pnemonia a second time! My Mom's 80th birthday which my brothers are planning a huge family event for it so a good time to get to see alot of my family which I haven't seen in over 8 years. And then a trip to Colorado to a motorcycle event around July 4th even if I can't get back on the bike by then. We both need these trips as my hubby is going on 10 months of dealing with his broken leg from a bike accident last June. His bone doc said it looks like he may be releasing him to ride his bike in May! This has been the roughest past year for us ever dealing with his badly broken lower leg (both bones) and dealing with my bc at the same time.0 -
Hi, Jan, nice to hear from you... there is a thread here just on gardens, another just on pets... there fun and have great pictures...
What kind of treatment were you switched to, then (you probably explained that before, but i do not remember). Wish you a great gardening season... be careful on those bikes...
Take care,
Catherine0 -
Karen, wishing you a "post-round 3" period easier than your previous experiences so you can enjoy more of this great time of the year. Thinking of you,
Hang in there...
Catherine0 -
Good afternoon!
Jan -- Of course we don't mind -- you're part of our group! Jel, too!
Theresa -- Scott should be doing the cleaning! He needs to maintain his "perfect spouse" image!
Steph -- I never got to it -- got slammed by AC#3. Under what forum do you think I should post?
Ladies -- I've had a wig break through, thanks to Caryn. Instead of caps, I tried my "wig gripper" that I had gotten from TLC. I had forgotten all about it till Caryn mentioned it in her post. It was much more comfortable. I was able to wear my wig for the 3 and a half hours it took to take my son to swimming and basketball (both at the local Y). Two of the other moms were complimentary about my new spring 'do!
I've definitely gotten past the worst of last weeks treatment. (Yes, Melody, you will eventually feel better!) Yesterday, I had lunch with two friends -- grilled salmon over a nice salad with lots of kalamata olives and goat cheese. And, I had watermelon and lasagna for dinner. Its the first time I've had a "well-balanced" diet day in a long time!
Hope that Karen, Leah, Marsha, Catherine, Jan and all the rest of you have a great Saturday!
-- Hillary0 -
Hillary, I'm feeling so much better that I am making Chicken Marsala, garlic mash potatos, and green beans. Have those nifty foil "freezers" with the lids and am going to "put up" 6 servings in the freezer for after #4!! Going with my girlfriend for an over nighter tommorrow, her daughter is at Florida State and she tore/pulled her ACL in her knee and Mary wants to go to the doctor with her Monday but didn't want to make the 3 hour drive up there by herself. Her daughter thinks I am "the coolest thing living" and I adore her. (This from a college student?) I love the good week!!!!!!!!!!!!! Jan, of course you are to stay on the cruise with us. We just can't let you in the bar. You'll have to do your drinking in the privacy of your stateroom. Hugs all, Marsha
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Catherine? Where do I find the garden or pets threads?
LOL Marsha, ironically in reality I rarely do drink these days. Alcohol and motorcycles don't mix too well so we made a promise not to drink while on the bike. We might get a real drink about once or twice a year now. So I will privatly drink a Sprite in my room, at least that tastes good now and it didn't while on chemo
hillary, that food sounds wonderful. Do you have a great lasagna recipe to make it from scratch? I have one my family loves.
I'm on radiation treatments 33 days of it, just did day 7 and so far no side effects! Well I did have nausea when rads started but my rad doc said its a late effect of the chemo! The Zantec I take morning and night she recommended is working to control that. Will get hormone treatment after this is done, Tamoxifin. When I stopped chemo I lost only 4% from my reaccurance chance of 25%. Rads and Tamoxifin will give me the most bang for my percentage of not reaccuring. Doc did say if my genetic testing shows I have the gene for cancer all that changes to a lot greater percentage of reaccurance despite any of the treatments I've had. Plus my surgeon said I will then definatly be needing a mastectomy sometime down the road due to that gene if I have it. Cancer sure sucks when there are so many forks in the road trying to get rid of it!
My motorcycle dealership is having another ladies day benefiting Breast Cancer Research in April. They did their first one last fall when ironically at the time I only knew I had two suspicious spots in my left not diagnosed yet. They decided to do it again since breast cancer has hit them so closely with me having it. In a round about way they feel like its part of helping me and any of the lady bike riders who may have to deal with bc.0 -
Carynn, a little while ago, you wrote: "Leah and all who mention licking lamp posts, please make sure it's not turning into thrush. When I got it my taste was waaay off, and food felt like it was backed up to my chest/throat. Just a couple swishes of miracle mouth wash, and I'm tellin' ya, all was right with the world. I understand if you kick it while its just on the tounge and before it spreads to the throat, its totally no biggie. So
take a look and make sure your tounge litterally isnt coated. Ok?"
What is the miracle mouth wash? Biotene? For the last 2 days it seems to me that my taste is worse and I have a feeling of coating, but my tongue is not that much whiter. I called in and the onc prescribed Duflecan (or something close sounding), but I do not know whether you can take it as a prevention (it's a 7 day tx)... I've had more "heartburn" type of stomach sensations since yesterday, too, and I was wondering whether this corresponds to the precursor signs of thrush... no sore throat, no fever... Thanks for your enlightened views...
CatherineH
ps: I religiously rinse with salt+baking soda and biotene also...0 -
Hi Catherine:)
Miracle Mouthwash is a prescription mouthwash different from biotene. It contains Benadryl, lidocaine, Maalox, and I'm not sure what else. I also use the Biotene but this was much better/different. I cant remember where I read about the indegestion symptoms with Thrush, I think it might have been on Webmd.
Anyway, it definitely helped me - hope that helps:)
Carynn0 -
Thank you, Carynn... My DH came back with the Diflucan and another mouth wash he found and thought might be worth trying, special "oncology". It seems to be more efficient than Biotene, too, and I will try that before taking the antifungus tablets since I hate the idea of taking more than I need... I did not develop the "cottage cheese" stuff others here were talking about... so, hopefully it can wait until the onc visit before chemo on Tuesday: they should be able to tell me whether that's thrush or not... I guess bobos are going to be our fate for a while... as long as it does not get much worse, this remains bearable...
Hope you enjoyed watching the rain from your couch... it was just that here: a beautiful rain, we got at least 1 full inch... just what lawns and trees needed... unfortunately this front triggered havoc in New Mexico...
Have a good night sleep and enjoy a beautiful Sunday,
CatherineH0 -
Good morning Catherine!
I'm with you about not wanting to take more drugs! We are all walking pharmacy's right now as it is!
I never developed the "cottage cheese" symptoms either. Just noticed a whitening of the tongue, and such. The Onc thought I caught it as it was starting which is probably why it was so easy to clear up. Hope you have good luck with it too:)
Well, the rain is gone and it's supposed to be a beautiful 81 degrees. I ended up over doing it a bit yesterday, so dont know how much I'll get out today, but it sure is nice:)
Hugs!0 -
When they couldn't decide if I had thrush- no coating on the tongue, but the throat was very sore and I had not other symptoms for cold, etc.- they prescribed Nystatin which I have been "taking" since Sat. a.m. (I say taking since you swish it in your mouth and then swallow it).
Sore throat is gone.
The nystatin is the main ingredient in Miracle Mouthwash (which is a prescription of benadryl,maalox and nystatin) which is great if you have the sores. If you don't, then the Nystatin is enough. Or so my helpful pharmacist said. And I think she is right. Feel much better this a.m. Bottom line is both are prescriptions.
Since the tin can/lamppost taste was so extreme, and now it seems to be gone, I would check as Caryn said.
Does it ever end???
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OH-OH Sybil- I had red what I will call pustules all over my scalp. Since it was really bad right after the first chemo, and I am the skin allergy queen, I thought it was chemo related. By the time I went to see my dermatoligist, he said it was a staph infection, which could have been related to my port placement, which was a week before the chemo. Anyway, they will culture your head, but he knew just from looking. Gave me a horrible antibiotic called Doxycycline (I think) and a soothing lotion for the head. It will take a long time for the dots to disappear from your head, even though the pimple part is resolved (does that make sense???)
Please get it checked out. Not a good thing to be fighting, although the nurses laughed at me and said 90% of the patients had some sort of staph infection. She said it was almost a given since we hang out so much in hospital setting... hmmm.. didn't like the sound of that at all...
Let me know what happens. Worth checking out.0 -
Good Sunday morning Cruisers. Hope everyone is feeling well. I've been reading the posts but haven't posted for awhile.
Tx to Linnie and Twink for the information on the glutamines. Linnie - were you able to find the Sympt-X brand at a reasonable price?
Karen - I'm glad #3 went better for you.
Pat - sure hope things finally turned around for you after #3 - I was reading many of your posts and wasn't sure I hadn't written them.
Leah - thank you so much for posting that there is hope after #3 - good grief, I was beginning to get gun shy for #4. Congrats on the good news on the tumor.
Melody - so sorry you had such a miserable infusion for #3. Hope all is well now.
Catherine - how wonderful you were able to get out into your flowerbeds. I am so looking forward to that. We still have water pooled in the flowerbeds and yard from the rain and melting snow so it's difficult to even get in there and look around. At least I can enjoy your imagery - even my olfactory senses - loved the aroma of the salmon souffle. Isn't it amazing what captures our attention and leaves us in awe these days?? I have so much more appreciation of natures beauty. Does Denver typically have drought issues during the summer? I would think with all the snow you've had and now this rain that perhaps you're off to a pretty good start with your water table.
Carynn - I sure hope you were able to enjoy the warm rain from the comfort of your sofa yesterday.
Jan - hoping you and DH will be able to enjoy the Colorado beauty from the seat of the bike this year also. Sure wish I was close enough to participate in your dealership's ladies day. Hats off to your MC son - you'll love the graduation ceremony - very moving. My DS graduated from the Paris Island boot camp.
Marsha - enjoy your overnighter. Always good to get away.
Catherine - your 'heartburn type' sensations could be acid reflux - do you have a burning sensation in your throat just below the Adam's Apple? I know acid reflux is a SE of the AC cocktail. I have it mildly but haven't noticed it getting any worse thru chemo (no better tho either).
I'm bellying up for #4 (last AC) tomorrow - starting 4 DD Taxol April 9. I know Catherine and Hillary are up Tuesday and Twink on Thursday. Sybil - will you be joining me tomorrow or are you on a 3-week schedule?
Hugs to all!0 -
Sybil - thanks for checking in with the March group and responding to my post. I feel just like you did; I was emotionally devastated when I got the initial diagnosis, but since then I've just been moving along with no real emotion. I get more annoyed than anything, but even then I am relatively calm. I used to keep a journal before I was diagnosed, but I just can't bring myself to write down anything about this experience. Everyone always says that I am handling this so well because I appear to be calm and in control, but I think I just don't know how to react emotionally to all that we have to go through. I am definitely going to contact my job's EAP and seek a counselor with experience in this area.
Like others have experienced, now that I am Day 11 after AC#2, I am feeling much better with AC#3 only 4 days away. I am so dreading the upcoming treatment - feel kind of sick thinking about it. However, you help inspire me to be strong and keep going!
Best to everyone!
Steph J.0 -
Well, I'm late with getting reservations for this week at the bar. I've been too busy getting the paperwork together for taxes (all done - yay!). In what feeble brain I've got left, this is what I've cobbled together:
Monday: Phyllis
Tuesday: Hillary, Catherine
Wednesday: Marsha
Thursday: Steph, Pat, Twink
Apologies to those I've omitted (or even added incorrectly). Please send in corrections, updates, ect.
-- Hillary0 -
Phyl, nice to hear from you... we'll hold your hand for tomorrow and cross our fingers so you sail through with minimal collateral damage...
Yes, we've been blessed with the weather these last 2 weeks... the rain is gone and we woke up to a glorious sunny day, not a cloud in the azur... In spite of all the snow, they say that all mountain resorts are under where they should be at this time of the year (March is supposed to be the heaviest snow month: we did not get any, but could all be in April, which is not good for trees with leaves...). We are kind of new here (will be 2 years in April) , but from what I understand the bad drought is over and we are allowed to water lawns and flowers, etc. 3 times a week, which seems not much of a restriction to me: in very humid Brittany, where we lived before, when summers are dry you cannot water yards nor wash cars, so grass turns yellow... until the next rain...
Yes, Nature is the best comfort... I grew up in Normandy on a dairy farm, and these are my fondest memories, taught me a lot. I lived 12 years in Paris (intra muros) and 11 years in Houston, 13 years in the French country side again, and now in a large city, but as long as I have some dirt to play with and plant things in... I am happy as a finch...
Regarding the stomach issue, it's really a burpy stomach (Maalox helped). I have acid reflux (family stuff) and I try to sleep laying not too flat, and it's ok. Curiously, it has been less of an issue for me than prior to the chemo... go figure...
Steph, I can really relate to what you write. I've never been so calm in my whole life. The only times I have been able to shed a tear (or 2...) was when dealing with the hair loss for real, and then, since I have always been a big crying baby watching drama or little romance movies (especially if dogs are involved), that's where the flood gates are wide open... feels so much better after that... I write down very telegraphic notes describing symptoms for the onc (for the study), but I am unable to write about this in the form of a diary: I believe that the need for it is gone thanks to this board... a much nicer alternative and more interactive way to share the experience. We are all different, and your way to handle this may be completey normal for your temperament. Don't worry in advance for #3, that was my best so far in terms of comfort and energy levels... enjoy the day... and prepare the nice stuff to make your chemo session more pleasant and relaxing. I packed my MP3 with Mozart's piano concertos and Gabriel Fauré's requiem (I know, sounds funeral, but it is so breathtakingly beautiful!), Chris Boti, Celtic music... these help me so much during chemo, uplifting my spirits and lowering my blood pressure... worth trying...
Cheers to the cocktail ladies of the coming week...
Hugs to all,
CatherineH0 -
Good Sunday morning to everyone! Yesterday I spent the day prettying up the yard in preparation for rain according to the forecast. I felt really good with plenty of energy to visit 2 gardening centers for inspiration, one in Marion Texas about 27 miles from home and another here in town (I just HAD to go to one more). I think everyone has spring fever because both places were jam-packed with customers with carts filled to the brim with plants/flowers. I love this time of year!
All my prior UGH symptoms have subsided thank goodness and I'm ready to take on #4 on the 29th.
Pat0 -
I've only a minute to post as my DH wants answers on our income tax stuff --
Leah -- Thank you for your info re: head sores. Seeing as how I am supposed to avoid infections, it sounds like I better call my onc and see if she wants to evalutate them. There are some that look like "pustules", that's why my DH said they looked like ingrown hairs.
ErinsGram -- I am on a 3-week schedule so I won't be joining you at the bar but I will be wishing you well.
Steph and Catherine -- Your posts could have been me writing them. It's amazing how similarly we are coping/not coping with this. love, Sybil0 -
Pat, i can imagine the excitement of visiting nurseries: the only "consumerism places" where I feel like i can spend every penny we have... I can't wait to do that, too, must protect the peonies from dog stampede... also need to be serious about buying good gloves to protect my hands properly... Enjoy this wonderful season...
CatherineH0 -
I think I've got the bar reservations right, but I'm not totally sure who is every two weeks vs. three weeks. Let me know!
Monday: Phyllis,
Tuesday: Hillary, Catherine, SammieKay
Wednesday: Marsha, Wendy
Thursday: Steph, Pat, Twink
Friday: Maisy
Also, TinkC and Terry and Sybil and Alyson -- are you this week?
My fortune cookie tonight said: "Be prepared to accept a wondrous opportunity in the days ahead." My husband and I said at the same time -- chemo!
-- Hillary0 -
Hi everyone! Just checking in - hope you all had a great weekend! It was warm and sunny here in central Illinois - it was great to have the windows open and to breathe the fresh air!
Hillary, yes, I'm on for Wednesday,thanks!
Wendy0 -
Hi cruisers
My next appointment is 5 April - I am a on a three week cycle so hopefully it will be next week depending on bloods.
Have just read through all the postings on mouth problems. Catherine,, Leah, Carynn, hope things have improved. My mouth has felt like sandpaper especially the roof of it. Bakingsoda and salt washes help as does a diflan spray. Can't get rid of the metallic taste. The reflux has been nasty at times so have to watch what I eat. Anything that is very rich causes problems especially the brownies my American friend made for us, well maybe it was the cream. Anyway they were brownies to die for. This was after a concert in which elder daughter sang. She is an opera singer- she was soprano soloist - did Carmena Burana and some other works.
Last week was just awful as I got a 'tummy-bug' which has been going around school. I don't usually get such things but did and it was bad.
Feeling very old today. Turned 58 on Sunday. Had a lovely day with my family but it didn't stop me feeling very upset at times.
Have managed school today which has been great. it is nearly the end of the school day and now I have a meeting which will finish about 5.oo when DH will pick me up.
Good luck for those who will be visting the bar this week.
Alyson0 -
Hi everyone---
Glad to see that everyone seems to be doing better---we have come a long way (but there still seems to be such a long road ahead sometimes!) Haven't checked in for awhile...I've been too caught up in B-ball and spring of late! And now that the Jayhawks are out of it, I can spend my energy on taxes (ugh), flowers and trying to build up my energy with walking...it's so much easier when it's 70, sunny and spring is bursting forth!
Hillary, please put me down for #3 on Wednesday---I'm on the 3 week plan. Right now I'm feeling like a strawberry/banana daquiri...with the umbrella, of course!
My chemo center is way too serious, so I've decided that I have to have a new fabulous hat/scarf for each adventure...except that with 6 treatments to go, I'm a little worried I won't find enough. This week's hat is a lovely brown standup, with fake grass on the top, and about 6 4" flowers of various spring colors standing straight up. If that doesn't give me a reputation, then I just don't know what will. Wanted to add matzo and chocolate eggs for the passover/easter theme, but I'm just not crafty...and then there is that problem with all the staff standing around and snacking off my head....
Good luck to everyone this week!0 -
Hope you caught it early. Mine was like 3 weeks by the time I got out to the dermatologist, and I was COVERED. Good luck..
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