anyone starting chemo in Nov 2005
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Why does it sound like most of you get your Neulasta a day or so after treatment?
I get mine immediately after treatment. I'm curious why I'm different.....
Make my nose stop running!! I just asked the oncologist about the connection, and he said there isn't any connection between a runny nose and chemo. Is he yanking my chain?
Debbie -
Hello Bosum Buddies. So good to see you all and welcome to new members of the club.
Odalys, what is 5-FU? Sounds like a horrible reaction. Hopefully they will get that resolved quickly so you never have to experience that again.
Lynn, CEA is one of the 2 cancer markers my doctor does with routine blood tests. The norm for non-smokers is 3-5, smokers 5-8. Above that it can be an indicator that cancer is active, but can also rise whenever there are things like chronic bowel disease, infections, etc. Mine has been going up and is now at 15. Onc is more mystified than worried, so that's the tack I'll take too.
Still have all my stubble (day 26, but very sensitive.) At Thanksgiving, my 5-year old grandson said "Grandma, you and Grandpa Ron look alike, except you're beautiful.( You can bet he's in the will.) The biotene mouthwash and toothpaste really help, along with constant rinses of bakingsoda/salt and warm water. They will keep you eating tacos longer.
Agree about the weird food cravings and will probably gain weight, but that's OK. Gas is most annoying and not sure why or how to resolve. Any thoughts?
Debbie, my nose does not stop running. Get really soft tissues.
Still feeling good and it was wonderful to have a good night's sleep. Wish the same for all of you.
Nancy -
Hi Ladies, Felt pretty good on day #5. Worked in the morning and this afternoon got my head shaved and wig styled. Threw the wig off as soon as I got home. It gave me a headache and was uncomfortable. I suppose I will try to wear it again. Maybe to work. I also bought some hats a while ago so I think I will be more comfortable in them. I love the little sleeping cap I ordered. It is very warm and comfy. While I was at the Image Recovery Center getting my wig I picked up some queesy pops. They are great and really settle my stomach. I seem to want to eat all the time and my nose is also running a lot. I am underweight so I guess eating a lot is a good thing since my family is always on me about gaining weight. I have been waiting for some fatigue to set in but it hasn't happened yet. I guess maybe it is cumulative. Anyway, hope you all had a good Friday and have a good weekend. Liz
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Hi Everyone,
I started chemo in Sept and my nose was running b efore I even started. I've never had allergies and my nose is still runny. I wonder if it is because our immune systems have been compromised from the cancer? I have no ideas. I will be on the Herceptin as well and from what I've read the most common side effect is a runny nose!
God Bless All Of Us,
Lexi -
Hi everyone,
Looks like everyone is surviving the week.
LynnZ Im sorry about your husband. I'm sorry about the red bumps they suck and I get them after every single treatment, usually around day 10, mostly on my head but on occasion I have had them on my chest and back also, this time I got 3 on my face and one in my ear. I put neosporin on them and it seems to help. I don't know what they are but they seem like they are ingrown hairs, which would make sense since last time around during chemo I had a weird war going on with my hair, it would grow and fall out every single treatment, I still had to shave my legs every 4-5 days and I think I will have to this time around too. And I swear I am not an overly hairy person so I have no idea why my body fights so hard to grow hair.
I have realized this week that I must have blocked out several side effects from last time because all week I have said "Oh, yep forgot about that one" and my last chemo I finished up in June. Oh well, I say fine throw at me every possible side effect you can I will still be standing at the end.
My hair is still shedding, and once again I can't bring myself to shave it and I'm just not sure why. It isn't like I am emotionally attached to this hair although I did notice that it was starting to turn back to red, a little late but at least I know it takes about 5 months to start to go back to "normal"
I go for treatment #2 on Monday and know from past experience it shouldn't be any different than any of the others. I know they say the effects are cumulative but I never felt that last time around so, have hope ladies. My nurses have always told me each treatment should be about the same and so far they always have. For me having been off it for almost 5 months I was worried but they said it shouldn't change and it didn't, if anything I think it got easier.
maybe its from all the water I drink. I started drinking water way back in April when I had the first one and I have never stopped its really the only thing I can stand. Soda tastes horrible, I am not a huge milk drinker (although I went through a two week period last time where I couldn't get enough chocolate milk) and I don't care for juices so its Fiji water for me all day everyday. I pour it over ice and I drink about 2 of the big ones everyday. Its expensive but I don't care. I figure I'm worth it.
For thos of you who aren't sleeping I have no advice, from May until about 3 weeks ago I never slept for more than 2 hours at a time no matter how tired I was. I was on a 2 hour sleep, 2 hour awake program. For whatever reason I am now finally sleeping almost 5 hours a night and I have to say, it is heaven. So hang in there, sleep will not allude you forever, it just seems like it.
Have a good weekend
Deb -
Hello Everyone,
Odays welcome to the group also sorry you had to join us but there is a lot of support here.
IThis is my 17th day and yes my hair is coming out. My husband who shaves his hair anyway cut mine close but tomorrow he will sheer my like his. It's so cold that I don't want to catch a cold from not having any hair. Does anyone wear something on their head at night. I have found that a bandana works well and if you are not have hot flases. I have ordered some caps and a sleep cap also. During the day if I am going out to wear my wig I wear a wig cap pluse my wig because it has been cold and windy here in Texas.
Today went to get my 3 weeks manicure and found my nails are turning dark in the cuticle area so a dark color was used. Anyone experiencing this? If so do you know why or what makes them dark my manicurist sais that there something my body was missing.
My next Chemo December 8th, ready to hang in there with the Chemo to help it do it's job.A/C and Taxotere. 1 down and 5 more rounds to go!
I feel ok, kinda experiencing dry mouth and dry eyes,and nose. Feeling sleepy and need to go bed so I guess I will. Night All.
Grace -
LizM: Look inside your wig; there might be two little velcro tabs you can use to make your wig a little looser; that should help make it a little more comfortable.
My nose is always runny, too.
Lexi: I will be getting Herceptin, too.
Grace: I wear my fleece cap to bed and around the house during the day. I love it and wish I could wear it under the wig. It seems to be full of little stubbles now and I really need to wash it but can't seem to get it off my head, it's so comfy!
Days 2 through 6 after A/C #2 were spent dragging myself from my bed to the sofa, dozing most of the day and having zero energy or appetite. Week 2 has been okay, though, and I am looking forward to week 3. Last time around I felt fine. Next chemo is on December 12th.
Anna -
Hi ladies.
Just want to share a quick remedy I was given by a gastroenterologist for clearing those painful mouth sores. Dab on cold Mylanta or Maalox on the sore with a cutip and let it sit for a while/overnight. The coldness helps the pain immediately and medicine gets rid of the sores within a day. Hope it helps.
LynnZ and NancyK, 5-FU is another name for Fluorouracil. I receive 850gm of it in a cocktail along with Epirubicin and Cytoxan. Nurse said they can reduce the dose, we'll see. I don't think I can go through that reaction again.
Take care ladies. Have a good day. Hugs at all. -
Hi Everyone~ just thought I would check in, I have been so exhausted the last four days. Haven't even caught up on all the posts. Someone asked about 5-FU. I am taking that and it constipated me so bad, I have never been in that much misery......they gave me Senekot....it did nothing. Yesterday I got prune juice and drank 3/4C...big mistake...lol...I think two swallows of that would have worked. I spent 8 hours in the bathroom every 7-10 minutes. It worked that is for sure.
Today I am trying to do some laundry....feel pretty weak and shakey yet. They gave me a Neulasta shot on tuesday, I go for blood work on Monday. Starting to get a sore throat. Don't know if that means anything, but hope not.
Hugs....Kaye -
Well, day 3 of chemo#2. This has been far better, so far. I get a headache if I lay down too much.
The only problem with the treatment this time was the placement of the cath in the port. It took 3 X. and I still have some swelling. The onc nurse suggested LDX. It is topical over the counter and to put it on 1/2 before injection. She also sprayed this numbing stuff on my port area. It took a lot more spray each time they tried.
During my visit, the Onc dr suggested I be sent for genetic testing for BRCA #1 BRCA #2 and now wants me to see a gyn oncologist. Says because of my age and family history, I have a good chance of a mutataion. Does anyone have any infor in this area or have been diagnosed with the mutation?
Anyway, glad to see most everyone is doing great on meds and water.
Welcome Odalys.
talk to you soon:)
P.S. I get to see my wig on Tuesday. I won't get to pick it up until Thursday. They have to stretch it for my BIG head hee hee. -
Dear Wendy,
There is a website Facingourrisk.org that deals with Genetic mutations and specifically BRCA1 and 2. I am BRCA2+ and my sister is completely negative. What the mutation means, is it puts you at a much higher risk for a 2nd Breast Cancer as well as Ovarian Cancer. it is knowledge, not a diagnosis.
First, you should meet with a genetic counselor to go thru your family history. My insurance paid for the blood test(that's all it is a simple blood test) and I got the results back in 3 weeks.
Once I knew I was positive, I opted for a prophylactic bilateral mastectomy. Once I am done with my cancer treatment, I will have my ovaries and fallopian tubes removed.
I am 50 yrs old and am not having children, so the decsion was very easy for me- I hope to never have the news that I have a new cancer.
If you are positive, your children/siblings should be tested as well for early screening and early detection.
Please feel free to email me if you have any more questions.
Good Luck
susan -
Susan, thank you for the facingourrisk website. i have been curious, about the BRCA testing, as I have 2 teenage daughters. However, I have been warned not to have them tested just yet, #1 not to make them worry, and #2 being tested positive for the gene could cause issue with life insurance policies down the road.
On another issue. i tried posting last night, and had a whole paragraph written, and submitted, but my computer froze up, and it never sent. bummer, I had a good cry going on!!!
I am not sure if I mentioned on this thread or just on the OUCH MY SCALP HURTS, in the HELP ME GET THROUGH TREATMENT section, but OUCH MY SCALP DOES HURT!!! I totally expected my hair to fall out this weekend. I am at day 17, after 1st AC, and my scalp hurt so bad Friday night, I couldnt even sleep. I had cut my hair short on Wednesday, preparing for this. I felt I was emotionally OK, and ready. I have 2 great wigs, plenty of cool hats. NO scarves, I refuse to do that scarf thing! Well, let me tell you, Yesterday, I was so upset emotionally, I didnt dare take a shower. I had a plan to have my girlfriend come over tonight, (now it is going to be monday night) and buzz my hair, with the cutting help of my daughters. A few drinks, and a crying spell or two, thought would be good for us all. Well, I spent all day yesterday, moping around, on an off crying, watching TV movies, and really feeling for the first time, OH MY GOD, I HAVE CANCER AND IT SHOWS!!. up until now, this has been my thing. No one has seen me be sick, (very small symptoms), no one has seen my scars, (no partner in my life), No on can believe how strong I am being through all of this. I cried all day yesterday, because my head just ached, and I knew it was coming out. Now I cant act normal, and hide the fact anymore. This is now available for outsiders to see..... Well, I am prepared, and I am strong, but I had a lousy day yesterday. Today, I woke up, took a shower, and the amount of hair in the drain was GROSS. Then while trying to comb the tangles, got a huge hairball, so I decided to smooth the hair I have down, (still a lot)and wear my wig to church. NO ONE noticed! The wig i picked out first is shoulder length, just like my hair, before cutting on wednesday. It felt comfortable, and I didnt worry. I came home, and tried on my other wig, shorter and fuller, to show my mom, and we went out to walmart, and I wore that one. I felt fine, and no one looked at me funny. So I guess, it is still MY THING, no outsiders need to know, or give me looks of sorrow, and I can retain my strength. Today is a much better day than yesterday. But, i am glad, I gave myself the day to mourn the loss of my hair. I called my girlfriend, and asked her to come tomorrow night, so I can have 1 more day with my own hair, even though I had it covered up today. Weird huh? -
Lynn: Since we started the same day, I wanted to share a very similar story. I did take a shower. It was horrible...the amount in the drain. I too, had already cut my 16" long hair to about 3 inches. I cried alot. I have not picked up my wig; will do it Tuesday when it arrives. I have been wearing hats around the house and avoided church altogether. I feel your pain!!! But today, I am going to Old Navy to get a nice fleece hat and wear it all day
Susan: thanks for the info. I am 37 yrs old and have a background of breast/uterine/cervical cancers in my "upline". I already have my four children, so I too am done with my family and do not want cancer ever again. I will opt for removal of everything if I am tested with a mutation. Not really that extreme, but I will do what you have done. As for my daughter, Lynn brought up some interesting points I had not thought about. I'll have to ask my doc or genetic counselor. I meet with the gen couns next week. The blood test should take about 6 weeks they tell me. Thanks for the great info!!! I really appreciate it.
Last: I have a question for anyone. Is anyone having horrible dry skin???? Like really scally (SP). Could someone let me know what works with them. I am using Bath and Body = body cream. It helps somewhat, but I am putting it on 2-3 x a day.
Thanks, hope everyone is feeling good. -
LynnZ - I can relate to what you're going through. I too felt as long as I had hair the outside world could not see what I am going through. Having no hair meant proove I am fighting cancer, and I refuse to give cancer any power.
My scalp started to hurt on Friday and by Saturday morning it was extremely sensitive. I thought I had sores. My hair was shedding, it was disgusting. Then, I went into the bathroom, took a deep breath, and shaved my head! I did it!!! What a relieve, it wasn't as bad as I thought. The scalp pain went away almost immediately. Afterwards, I showered and felt a sense of accomplishment just getting through this hurdle. Its one more round in this fight, and I will win the fight. Now, I'm adjusting to not having hair. On the positive side dont have to worry about coloring, styling, etc Wore the wig all day yesterday but it did not feel like me. So far, I feel more comfortable in hats. Ill have the wig styled again, this time to match my hair style, maybe then it will feel more like me.
Hang in there, its only hair. It will grow back. Besides, our family and friends love us for who we are. It has nothing to do with our hair. Take care. -
Kim, Thanks for sharing your experience with Taxotere. It's comforting to hear you're handling it well. I hope I have similiar experience. Good luck on the rest of your treatment.
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Anyone still getting their periods on chemo? I got mine, and I'm worried whether or not tampons are ok.
Debbie -
Hello everyone--it feels so good to catch up with all of you. Lynn, I know what you mean about the scalp--I just can't believe that my scalp is still so sore--my first A/C was November 7 and I still have so much stubble. Cancer support group recommended a thick paste of baking soda applied for about 10 minutes and rinsed off. You can do as frequently as you like and its soothing. Sounds like your wigs are lovely and you have some options now. So many things we grieve along the way, I'm learning to face my losses and, like you, shedding the tears so that I can let go of it and move on to the next challenge.
Odalys, sounds like FU is the right term for something that is so hard on you. Hopefully that's behind you.
If it isn't somethin', its somethin' with this disease and its treatment. Trying to find the right balance is a crazy maker. Kaye, I found that if I took a Senecot-S the night of my treatment, and another the next night it worked out OK without pushing me too far in the other direction. Of course, gallons of water. Eight hours in the bathroom is no fun, is it?
Dry skin--oh yes!!! I have been using Aveeno in addition to moisturizing body bath, applying lotion everytime I wash my hands, etc. About once a week, I put lots of vaseline on my feet and wear a pair of socks to bed--does wonders. Wish I could do it all over my body---but they don't make a sock that big.
On Day 5 of A/C #2. So far, this has been less problematic than the first session. Drippy nose, can't sleep even with sedative, incredibly hyper, eating everything in sight, etc. Good news is that I haven't had the headaches, the nasty mood swings, or the flu-like aches of round 1. I know that when I come down from the steroids, I will be exhausted, but for now using the energy to prepare for the Holidays and days when I don't have anything to give.
Stay warm and well. You're all in my heart.
Nancy -
Nancy,
Wow...I had not made the connection. You're absolutely right. Thanks.
Odalys -
Hi Ladies, Feeling pretty good this week. Wendy, I use JASON organic vitamine E cream on my scalp and my body. I use sage and citris clenser and cream on my face. I use peppermint and tea tree on my feet and toenails and I use Bee pollen to wash my scalp everyday. I think I am getting a mouth sore so I bought some malanta and q tips today (thanks for the tip). I am using the biotene toothpaste and mouthwash and I love my quessy pops after every meal. I am eating like a pig but haven't gained any weight yet. It's funny because I am an organic fruits and veggies kind of gal and yesterday I made a box of mac and cheese and ate the whole thing. I think I'll make mash potatoes for dinner. I still have my hair, day #7, but I shaved it on Friday. Wore my wig to work today and got a lot of compliments. My wig is not even the style of my hair but it looks pretty good anyway. Still love my hats and will wear them everywhere but work. Did get a little emotional yesterday. Sometimes it just hits me hard again that I have BC and I have a good cry and then suck it up and keep on marching to that finish line.
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Hi Liz,
Sometimes I too get very emotional and have a good cry. Then, I remind myself the cancer is OUT and now I'm just making sure it does not return. It's comforting to know I'm not alone in the march to the finish line. Hope the Mylanta helps those mouth sore. Let us know if it works for you too. -
Debbie,
I am still getting my periods. I haven't worn a tampon though. Funny with the Taxotere they told me I probably wouldn't get it but I got it 2 days after first session and then a week after this past session. Right on schedule. It was nerve wracking because I wanted to make sure I was bleeding from my period, not having some side effect.
I had a good cry yesterday. Have them once in a while. I don't think we would be normal w/o them. Then I calm down relax and tell myself I going to get through this.
hugs,
Kim -
Anyone get eye twitches. It is so annoying!! Also, yesterday I ate olives and I have had this nasty taste in my mouth. A sour taste. Can't get rid of it. Yuck! I guess I found the first food that doesn't agree with me.
Kim -
Kim, are you sure it isn't from the chemo? I get a disgusting taste in my mouth for the first 5 or 6 days of chemo, then it goes away.
I have a sore throat now-freaked out about if it is going to develop into something awful.
Debbie
PS-my scalp is full of flaky goodness, but finally is not as sensitive. YAY. -
Kaye, when I came home from the first AC treatment with my prescriptions, 2 of the things recommended were Senecot, regular, not the one with the S. doctor said the S is an added laxative stimulant. And she didnt want me to use that. That could explain your frequent trips. She also recommended colase. just to keep things softer. i used the colase for a day. and by day 3 i tried the senekot, and things were fine. i was drinking tons of water, so that i am sure helped.
Kim, I just got my period Sunday, right on time. No syptoms leading up to it though, so I was sort of surprised. I am using tampons, hadnt been told not to, but also was told probably wouldnt get it???? Maybe i wont get it again, YEAH.
I had my daughters cut off all my hair last night, and my girlfriend buzzed it 1/2 inch. It was a fun evening I guess, we all laughed. The girls gave me a mohawk first, and we took pics, that i sent to my friends online. It is reality now for me and the kids. Up until now, the kids barely acknowledged I had cancer. It made them sad to know it was falling out in handful, but they seemed better, taking part in the cutting, and helping me deal with it. We noticed a few balder patches, and some redness, and a few small sores. but boy does it feel better. I did wear a comfy soft hat to bed last night, that helped.
Debbie, I also have a scratchy throat, and use hall's drops often. I take benedryl everyday for the constant runny nose.
I am going for my plastic surgeon consult today. I am going to pick out my new boobs! I am planning on a bilateral mastectomy after all treatment is over, with either TRAM or DIEP reconstruction. (free tummy tuck) This is a choice thing for me. I have DCIS lingering and cant live with the 30% risk of recurrance. The right breast is prophylactic, for a cosmetic match.
Have a good day ladies.....LynnZ -
Lynn, picking out new boobs sounds like an adventure. You can go any size you want now, right. And, a tummy tuck? And a new "do". You will be one hot chick when this is behind you. Funny how different onc tell us different things--my said Senecot S because of the stool softener aspect (sounds like colase does the same thing) and also said don't use tampons because of the thinning and to reduce the risk of a small tear and infection. It would be easier if there was a big "rule book" that everyone agreed on, but we're different and so I guess its OK if the onc are too.
After 5 days after A/C #2, I thought I was having an easy time. Today has been very rocky. I guess the lesson is that each time will be unique.
Hope all of you are weathering the snow storms and staying warm.
Hugs to all.
Nancy -
Hi LynnZ ~ I like that new picture!
I have been so out of it lately.....this is day 8 and my hair is still with me. Lightly coming out, but it did that before the chemo.
I had a seizure on Sunday.....not sure what that was all about but spent the day in the hospital. Never had one before, they said I was dehydrated, probably from all that prune juice I drank....lol
They ran blood work, said my WBC was 1.5, I asked the doctor what normal was and he said 10,000?? I am really weak and worn out. Does anyone know what their bloods counts were after their first chemo??
My Oncologist wants to see me next Monday for more blood work. My port is all purple....weird things going on with me.
Glad to hear most of you are doing well......I haven't seen any posts from Lana, hope she is ok.
Hugs....Kaye -
Hello everyone,
Kaye, sorry to hear you are experincing so many problems...hang in there. It's a journey we all have to travel.
In reading the post it seems like everyone is moving along smoothly. I'm getting prepared for my 2nd Chemo treatment December 8th, A/C and taxotere sure hope I get the same nurse. Do you get different nurses?
Right now these hot flashes are up and down I'm constantly taking off my clothes and putting them back on. I have ordered so many hats and caps that they are all too hot. The bandanna seems to work better than all of them. I wear my beautiful wigs when I go out of course.
I had to go the dentist this moring, had a gum infection it was a small one but was prescribed an antibotic, naturally I was concerned how it would effect my Chemo treatment coming up so I called the onc nurse and she said it could raise my white blood cells so she said be sure to take the antibotics.
Also, I experence dry skin, I use Eucerin Intensive Repair lotion after a shower. And Nancy I too use vaseline on my hands and feet with socks at night it is the greatest. My mother has done this for years.
Blessings!
Grace -
Hey Everyone-
Feel like I'm starting to return to the land-of-the-living....Kaye, I had horrible constipation - completely incapacitated for 3 days -- took Senekot-s, Colace then finally Magnesium Citrate. I think what I really needed was to work from the bottom up, but enemas and suppositories are not allowed -- ugh!
Anyway, looking for ways to prevent this for my treatment next week -- this has been the worst part of treatment! Prunes are on my list, as well as high fiber foods and lots of water -- I'm wondering if I didn't drink enough water last time -- I'll really keep track this time....
All for now!
Chins up!
Lana -
Kaye, I am sorry you are having a hard time with the first treatment. I hope your blood work come back ok on Monday. I'll be praying for you. Grace I got different nurses the 2 times I've been in for treatment. Lana, glad to see you back and that you are feeling better.
hugs,
Kim -
I am actually from the Oct post but thought I would check in and see how you girls are doing......
Lana, I also suffered from constipation after chemo for the first week and then I was okay until the next one. Nothing worked for me either. I think that was my worse side effect. I didn't know we weren't allowed to use enema's or suppositories. Do you know why not? I was never told I couldn't. I had my husband buy an enema but fortunately I didn't need to use it. Laxative finally kicked in and when I asked the nurse about the enema she said do whatever you have to to make yourself comfortable she also gave me a prescription for a laxative but I haven't tried it yet. Believe me I will be using it next time.....Graycie
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