Has anyone started a forum for Chemo in Dec 2008?

Catrenae

Happy Friday Ladies.

 Lisa- Awesome news about your sister! That is so encouraging!

Lainey64--  Sorry to hear you are not feeling well. Hope you get some rest and feel better soon. I stil have my lashes and brows, but they are definitely thinning.... I'm almost to the point where I'm going to have to fill in the bare spots of my brows with a pencil.

Horsercn-- You and I are pretty much on the same TX schedule. I have my 4th AC on Feb. 5 then start my 12 weekly rounds of Taxol. Then I'll have a bilateral mastectomy, followed by radiation and finally reconstructive surgery. 

I hope everyone has a great weekend with as few SEs as possible.

Cat

CindaD

Good morning ladies, My onc. nurses laughed when I said I thought I'd loose wt with chemo, they all said that people usually gain AT LEAST 10LB, if not more!  AGGGGGG.  I gained about 5lbs so far.

I also spoke to my onc. about 4tx vs 6tx vs 8tx.  He said it goes by your lymph node involvement.  I had also read that before, so I feel ok with just 4tx.  My 4th is sched for Feb 12! I made it work today and am feeling ok.  I'm looking at my SE a little differently these days and am not going to go to work if I'm fatigued.  I did much better last time when I didn't push myself, even though the fatigue was worse than tx1.  I'm looking at chemo as being my friend, and I'm just going to let it do it's job.

This insurance business is a load of crap!  I'd like to storm their offices.

Still getting my period like normal and getting night sweats!  What's up with that?

Lisa, I'm so glad to hear about your sister, I hope she celebrated that night, because it certainly is something to cheer about!

Have a good day ladies and stick to the positive!

lisasayers

I have talked to several women who have lost weight with chemo.  I have not lost or gained...holding where I started.  Everybody is different!  I hate it when they try to lump us all into one category...makes me nuts!

 Periods and night sweats...well that sucks! 

Make it a great day Divas!

bobcat

Good Morning Ladies -

I too have not gained or lost - just a little down right after treatment but then I gain it back and sometimes a little more because your appetite improves.  As for the eyebrows - I lost mine right after the 2nd TC  - they were already thin and pale and now I use a powder brow product to give my eyes definition.  The lashes are still hanging in there although definitely not as thick or long.  Mascara, mascara, mascara!!

Everybody is different!!  That's why were here!

Enjoy the day.  Bobbi

Firni

Hi Elaine,  Gosh, it's crappy you still feel so bad.  Knowing there really isn't anything you can do about it makes it even worse.  

Ya, I'm losing my lashes and brows.  I have little clumps of lashes gone so I can't really use mascara.  My brows are almost gone.  Just a thin perfectly shaped line of hair.  I've read on another thread that lashes and brows will fall out, grow back and when chemo is done, they fall out again for awhile.  

I haven't had any problems with any of my blood counts so far.  My onc is real happy with that.  But I would think the dizziness if from low RBC.  Take care of yourself today.

BonnieK

Good morning, Divas.  My eyebrows were really thin before treatment and now they are nearly gone since Tx#2.  I had an overactive thyroid a long time ago that had to be surgically removed and the overactive thyroid caused some hair loss and the loss of most of my brows.  The hair came back and the bangs covered up the sparce brows -- until now!  Yuck -- I feel like an old, pruny, plucked chicken.  On the positive side, it is great to have extra time in the mornings now that the hair is gone, the legs don't need to be shaved, etc.!

Have as good a day as possible and take good care of yourselves.

Bonnie

Lainey64

Hi divas.  On the advice of my boss, I called my Onc's nurse and asked her if how I was feeling was normal.  She said they like for me to feel better by now but it isn't "abnormal" to feel like this.  So I'm going to have some soup that a friend brought by for me (bless her!) and going to take an Ativan and rest.  Thank you all for your good thoughts.

Love, Elaine

Bold

Great news Lisa:

Lianey64:Sorry your not up to snuff today. I have been down for two days. And its only day 5. ugg. Fatigue bone aches and severe digestive problems. I hope that this is not going to get worse every time this is only tx2. I could not get anything done yesterday or today. I just wanted to survive. I am sure I will be better by tomorrow. and hope everyones ok.

goldie0827

Re: Flaxseeds

I wrote to my naturopathic doctor, I sent him the link that ptjen posted, and asked about the flaxseeds. Here is his response.

The flax seeds are great because these phytoestrogens can take the place of bad estrogens (at the receptor sites) and therefore promote health.  There are studies showing these seeds to benefit patients with ER PR + breast cancer.  I would not worry about taking the flax seeds.

I guess I am going to trust his opinion and continue with my flaxseeds.

God Bless Us All

Lori

Firni

Hi Lori,  that is what Lisa said about the phytoestrogens a couple days ago.  It's good to have that backed up by your naturopathic doctor.  I wish he would have sent you links to the studies showing benefit of flax to ER PR+  BC.

Caroline, you had written that you panic about being done with chemo and how do you know the cancer is gone.  I do the same thing.  I start thinking about when I'm not seeing doctors twice a month or so and not having Tx's and start to panic.  I guess that is pretty common.  I know when I have my blood work done for each Tx, they do a cancer marker test as well.  So far that's been coming back negative.  So I guess that means there is no cancer in me.  I was going to ask Onc more about it at my last TX but I forgot.  Didn't take my list of questions with me.   Is anyone else having the cancer marker test done??

Bold, my 3rd Tx has been much easier than 1 and 2.  I'm on day 4 of TX 3 and feel pretty good this morning.  No bone pain and not tired.  Yesterday I did have some achiness in my hips and I was tired but nothing like the last two times.  Today and tomorrow are usually my worst days and I don't see them as going to be too bad.  Maybe it's because I started Pilates a week ago.  I've been doing it every day.  Who knew pilates was such a killer tho?  I had no idea I was so stiff and weak!!

Elaine, are you feeling better yet? 

goldie0827

Firni, I saw lisa's post, guess I was more or less confirming it by another source. I will write him back and ask him if there are web links to post those studies.

Lori

Lainey64

Firni - Thanks for asking.  I was feeling lousy up until I went to bed last night and then woke up this morning feeling ok.  Isn't it weird how that happens?  I just don't get it sometimes! 

I haven't asked about the cancer marker test.  I know they take a whole vial of my blood.  I think I'll ask about that next week too.

Bold - I hope you are feeling better today too.

mimiwhite

Hi everyone!  Lori I really appreciate your info on flaxseeds. 

Lisasayeres, I am thrilled for your sister! 

Elaine I hope you are feeling better today.

Brenny how are you?

Mary L. I sent you a message, did you receive it?

Firni keep up the good fight with your insurance company.

Simvog how did your Rx go on Friday?  Was your WBC good?

Anyone getting anxiety over radiation?  I just started reading about it.  I wish my lumpectomy had not been on the left breast at 6 o'clock position.  I worry about my heart and lungs. 

Berrybasket how are things going with you?

Have a great day Divas. 

havehope

Updated list 

horsercn                 #4 26-Jan 09          4xAC +12 Taxol+Herceptin  

Mandy1313            #4 27-Jan 09             CMF

iktracey                  #3 27-Jan 09               4xTC 

apfuentes               #3  27-Jan 09              4xTC   

kokie                    #3 28-Jan 09              4xTC

mary5454              #3 - 29-Jan 09           4xTC

busqueen            #3     30 Jan 09           4xAC+12xTaxol

Colleen1960        #7  30 Jan 09        CMF  

mimiwhite            #4  -1-Feb            4xTC 

Grancy11                #  2 Feb               6xTC 

LindaBusEd         #-4   3 Feb             6xTAC

mmliv                  #4  3-Feb                4xTC  

zuffa                      #4 -  4 Feb           6xTAC

Brenny                 # 4- 4 Feb              4xTC  

Catrenae              #4 5 Feb        4xAC+12xTaxol  

lisasayers            #4- 6Feb                 4xTC 

bobcat                   #4- 6Feb                  TC

sdavis                   #4 9-Feb               6xTC

cebula                   #4 9 Feb            6xTC

Majanumba1         #4 9-Feb              TCH

horsercn             #1 9 Feb (TH)       4xAC +12 Taxol+Herceptin  

Colleen1960         #8  9- Feb        CMF 

Bold                    #3  9 Feb             6xTCH 

Firni                    #4   11 Feb              6xTC

ptjen                   #4   11 feb               4xTC

DrDecker            #3    11 Feb               4xTC   

CindaD               #4   12-Feb                4xTC 

swest                   #4  13 Feb           4xTC 

simvog                #4    16 Feb           4xFAC+12xTaxol

havehope

I am done with TX3! Today is day 2 and I feel ok. I went food shopping yesterday but in the end I got very tired and I ended up waiting in the car for my DH to finish it.

Yesterday I had a long talk with my onc about a lot of thinks, including Iscador and Taxol (she agreed with me that 12 weeks is better than 4x21days - less SEs), also I told her I don't want any hormone therapy, I asked what is her opinion regarding preventing mastectomy on the healthy breast -she said she needs the final pathology results from MSKC (still waiting for confirmation on my ER status). My onc told me to stay away from any supplements that affect the growth/shrinking of tumor during chemo. I can eat anything but no supplements. I asked her if I could take vitamin B1 because F (from FAC) eats vitamin B1 and it helps to replenish it. However, B1 has not effect on the tumor. She explain to me that the whole principal of chemo is that these chemicals are targeting all growth cells and tumors are dividing faster than the regular cells (hair, nail etc). If the tumor shrinks because of hormonal supplement it reduces the effect of chemo, which is supposed to kill the cells plus the doctors don't now how efficient the chemo is.

On the negative side I asked her how long after I will be done with chemo my port can be removed. She told me she doesn't remove it because after all, I have cancer and I might need it. I almost fell off the chair! I know I have a 12% chance of recurrence but I don't think that justify keeping the port in me for the rest of my life. Also, she had always encouraged me that I will win the battle I will be ok and the cancer is out of my body as far as surgery went - no tumor left, no skin, chest, nodes or blood vessels involved and now she is telling me "after all you HAVE cancer". I told her that this port comes out as soon as I am done, I don't care if I will have to put it back when and if the time comes.

I want to thank everybody for your support and wish you less and less SEs.

Firni

Oh my goodness, simvog.  I can't imagine keeping that port in for the rest of my life.  I'm certainly glad it's there now, but like you, I want it gone when I'm done with chemo.  I never ever thought to ask Onc about that!  I'm glad you got your Tx yesterday and you're feeling ok.

Mandy1313

Wow simvog, get that port out when you finish chemo.  I have never heard of anyone with a port for life.  You are right on there.  I told my onc that I would not have a port because I had perfectly good veins.   So I am portless with 8 tx and so far it has not been a problem.

All the best to everyone else on this board.

Mandy

Lainey64

Simvog - Wow!  What a visit you had.  I imagine I'd fall out of my chair too.  I remember on my first meeting with my Onc he said that hopefully all my cancer is gone and I'm cured and that this chemo is just a preventive measure.  I have stuck with that thinking the entire time and you should too!  During my visit with him last week, we were talking about my last 4 TX's coming up and I was asking about when rads would begin.  He explained it to me and also told me I could get my port out then too.  He didn't indicate any reason why I would need to keep it in.  Like Firni, I'm glad I have it and it's helping me now, but I'm ready for it to come out!  I'll get another one if I ever need to.  Even during my discussion with my Onc last week, I was talking about how my cancer is trip neg then I corrected myself to him and said "my cancer WAS trip neg".  He smiled and didn't correct me.  Keep the faith girl!

mary5454

Hi - still have my rash - day 6 of it. it's on my stomach, my inner thighs, my arms. eyelids etc etc and is it itchy. I have been taking benadryl, steriods and now they added allegra. Also taking ativan to try and handle the itchiness. My neck and head are a bit better so guess that's good. My left hand is swollen - my sister (an RN) says it looks like all part of the rash/hives/welts...scheduled to see afdermatologist Tuesday- am hoping it will be gone by then - feel like a mess. And #3 is scheduled for Thursday not sure if that is going to happen...

Simvog - my oncotype states I have an 11% chance orf recurrenrce - similar to you - but less treatment??? this is all so confusing..

have a good day all...I'll be laying around scratching!

ptjen

Simvog: Sorry for your appointment woes. I plan on getting a bunch of "cancer sucks" pins to hand out!

 mary5454:  I was having alot of itching and scaliness. My onco said that sometimes it's the cold, dry weather rather than (or on top of) SE's.  Anyway, I started religiously using extra moisturizing cream (I used the unscented, Trader Joe brand) and I've soaked in Aveeno oatmeal bath - double packs. I also use gold bond powder after a bath or shower. The improvement has been wonderful.  

I've had good luck with gold bond powder on my scalp - I rub it on my head every morning before any hats, scarves or wig go on my head. No itchy scalp any more.

ptjen

A thought about being cured - I know that we all want to hear those words. But this is my third cancer so I've had a bit of experience with it. The way I deal with it is to do all I can medically with my doctor - and for this one I am getting really serious about diet and exercise. But the doctor who has been treating me for thyroid cancer that surfaced 18 years ago said it well about ten years ago. I asked him, "Do I have cancer or did I have cancer?" His answer was, "If you have cancer, I can't find it." I guess I have taken my lead from that response. I do feel that all this talk about being a survivor drives me a bit nuts - I believe it gives people a false sense of security. Anyway, I hope I haven't stepped on any toes, but this attitude has worked for me so far. Time will tell if it will for BC! 

Bold

Simvog: My next tx is on the 9th of feb. Just wanted to let you know. I hope that tx3 is easier on me than this one. I have been sooo poooped. I listen to people doing all these work outs and I am lucky to keep up with my choirs the first week and a half.

Mary5454: I hope you can arrest that stupid itching life is hard enough.

I did not get a port and I have to have herceptin for a year after rads. So my vote is to get rid of it. I do not like the attitude you hae cancer. I believe that we are doing this preventively and that with a good fight and Gods help we will be dancing with NED. What happened to positive attitude. It is part of our healing teams responsibility too.

Feeling a little better today hope others are too.

mmliv

Bold - Don't get discouraged reading about others doing workouts. I am just trying to maintain the exercise schedule that I had before I started chemo. I am also fortunate that we are self-employed and business is slow right now; so all I have to do is keep up with paperwork, I don't have to actually run the business. That said.....

Mimiwhite - thanks for the encouragement, you got me going - just walked 3 miles... I was almost thinking about being lazy today. :-) 

I am astounded at those that are working while going through chemo. Take care Elaine!!! Managing the SEs and work schedules would be impossible on days 4 and 5..... and I feel that I have been doing well!

Mary5454 - I think PtJen is right, definitely try to keep the skin moisturized, chemo really dries out my skin and I am constantly applying lotion. Though dryness is probably not the cause, I know for me it contributes to itchiness. 

Simvog - You are amazing with the chart. Thank you so much for keeping it up to date. Can't believe the port bit.... can you imagine the number of people that would never accept a port and have problems getting the IV started for chemo treatment? I didn't need a port, but I NEVER would have agreed to one if I was borderline and thought it would never come out.

Day 12 - TC #3 - A little tired today; I know they say a lowered WBC doesn't cause tiredness, but since this is the third time I've experienced this at this time........ Other than taking a nap today I feel fine. I still have my lashes and eyebrows, the nails look fine, and no neuropathy. The taste buds are still off - salt is still detestable and sweets unappetizing. Love those veggies and meats. I do think that I have lost muscle tone and my skin is less supple. 

colleen1960

Today is day 4 from tx 6 and again I spent the enitre day in bed.  I am starting to feel better now but yesterday and today were horrible.  I could probably eat all day.  I wake up at 5 AM or so and I have breakfast then again around 10 or 11 I have something else and then lunch and dinner and then I have to have icecream before I go to bed.  I should of gained 10 lbs or more, but I have been lucky and pretty much stayed the same up 1 lb down 1lb up.  But I am sure by the time this is over the weight will be up if I keep eating like this.  I just got up to have dinner and I think I am ready to go back and rest again.  I hope everyone can enjoy their weekend!!

Colleen

Texas357

Hey all, it's nice to see that we're mostly on the same wavelength about changing diet and lifestyle after this. I'm trying to ease into the modifications even though I've always eaten relatively healthfully and exercised regularly. I liked Dr. Oz's response to someone who asked if they could just be "good" on weekdays and do what they want on weekends. He said, "Should you just brush your teeth 5 times a week or every day?" Kind of reminds me that we have to be diligent!

I've worked full time since my diagnosis, although I've taken quite a few vacation days since chemo started. If I couldn't hold my eyes open, I certainly couldn't function at work!

Also, my eyelashes and brows are definitely thinning. I've started using eyeliner when I go out to give the illusion of lashes. Some days, between the wig, dressing to camoflauge the lopsided chest and now the makeup, I really feel like I'm putting Humpty Dumpty together. LOL

LindaBusEd

Simvog, I, too, assumed the port would come out afterwards, but my surgeon told me he keeps them in a minimum of 2 years and if I wanted it out then I could. Between a hysterectomy in April, lumpectomy in October, Mammosite insertion for radiation in October, and port in December, I don't want another surgery for awhile. I will wait 2 years!

EleanorJ

Firni what is the cancer marker test?

Elaine glad to hear you're feeling better

simvog I love the smilies next to everyone's LAST chemo

LindaBusEd About the port, I asked my BS when she would be removing it since I had heard that some doctors like to keep it in for a year. She said as soon as I was done, you really don't want to keep it in longer than you need. The risks of clotting (I think that was clotting) within the first 6 months is something like 6 in 1000, but to keep it a year she says it becomes 6 in 100! Also, it needs to be flushed every month. Keep that in mind while chemo will be LONG done, you'll have to keep going in on a monthly basis (while paying them everytime) to have it flushed. She said it's easier (and safer) to take it and put on back in if ever needed.

Firni

I'm not real sure what the cancer marker test is.  I was going to ask this last tx but I forgot to.  I know it's part of the blood work I get before each tx.  I'll be sure to ask next time and let you know.

Texas, I love your analogy of putting Humpty Dumpty together again.  I doesn't make sense to be good all week with diet and exercise and then undo it all over the weekend.  Altho, I'm sure a treat now and then doesn't hurt.

Mary, I know my skin is not nearly as supple as it was and there is muscle tone gone, even tho I'm trying to keep active.  I really think the chemo just sucks it out of us.

I would like to get my port out the same time I have the expanders changed for the perm. implants.  I want to combine as much as possible.  I don't know if PS would take the port out or if my GS would have to do that.  I might have to wait a little longer to have both surgeons together but it would be worth it to eliminate some of the cost and some of the time under anesthesia.  

Brenny

mimi  - I am doing fine -- this is day 12 after tx3 and lots of little complaints, but nothing serious.  Thx for asking!

I haven't asked about port removal -- I don't mind leaving it in if we have regular blood work that has to be drawn --sure is easier than looking for a vein!

Am also getting nervous about radiation - just the logistics/timing/etc.  Not sure how many tx.

I did talk to my onc briefly about "the next steps" and the hormone choices coming up.  Mentioned the article I read that approx 31% of women discontinue their hormones due to se's -- he, of course, said, wait and see what your experience is.....but he did say (I think) that of the 3 treatments (chemo, radiation, hormones) that hormome therapy had the biggest impact on reoccurrence -- is that a fact or did I mishear him??

Brenny

lisasayers

Hello Ladies

Today is day 10 from TX3 and my tongue is almost back to normal!  Sleep is at a premium right now as I'm dealing with the constant night sweats.  Still no period...I guess it's a goner until treatments are over...and then I can't wait to see how it returns! 

I don't have a port, but I can't imagine them leaving it in!  I can't wait to get rid of these expanders...you could set a beer on top of them!  It will be nice to get the implants and have something more similar to a real breast!

My eyebrows and lashes are definitely thinner now.  Still don't need to shave my legs!  Don't miss that! 

I think we all need to be kind to ourselves...and when we feel tired, get some rest.  As women, we tend to take care of everybody but ourselves.  I was teaching a health seminar today and telling those women the same thing!  Remember the old saying, "If Momma aint happy, aint nobody happy!'  And if Momma is sick...nothing will ever get done!

Have a great Sunday evening ladies!