Has anyone started a forum for Chemo in Dec 2008?

EleanorJ

Well, this is a bit how I'm feeling about it. I was planning on not taking Tamoxifen but then making sure we change the way we eat and do a bit more of the alternative route..

Simvog, what kind of alternative treatment do you plan on doing?

Lisa, lucky you. Wish I only had 1 to go!

mary5454

Carie -hope your husband made it to you! I live in upstate New York - pretty mild right now (well freezing but not snowing here anyways).

 11:00 p.m. day 5 starting to feel human- still constipated (after colace, miralax, bran muffin and now ducolax!) but bone pain subsiding...think this is the start of feeling better. Hopefully will sleep tonight,

 I am hormone positive (strong estrogen) and menopuasal so will be taking AI - but not too pleased as I don't like the side effects. Guess I should look up studies too.

 What alternate treatments are people doing? I have reiki scheduled for 1/20  - am open to whatever. definitely plan to change my diet - that is when my stoamch and taste buds return to normal!

Have a nice evening...sleep well all...

lisasayers

Hey Caroline

I still have to get through Friday, then one more to go after that.

I started eating clean about a year and a half ago...got rid of all the white stuff: sugar, flour, rice, pasta.  No processed foods, little red meat, lots of fruits and veggies and whole grains... but also protein, complex carbs and the good fats.  I will say during the holidays I didn't eat clean 100% of the time and during chemo I have had some strange cravings...but I'm back on track.  Organic as much as possible and no added hormones in the meats.

I also exercise at least one hour every day. 

I'm following many of the Dr. Horner's recommendations from her book Waking the Warrior Goddess. Some of her recommendations: 2-3 tablespoons of ground flaxseed daily, maitake mushrooms, turmeric, green tea, garlic, wakame or mekuba seaweed, whole foods daily vitamin, selenium, CoQ10, herbal anti-inflammatory, low BMI, rarely drink alcohol, non-toxic cleaning products, keep home as toxin-free as possible, purify body several times a year, bed by 10 and up by 6, meditation.

Many I was already doing...others are new.  Some I can't start until after chemo is finished...like going back on my vitamins. 

I'm also looking into IC3 and iodine and also adding more Vitamin D to my supplements.  There are studies regarding Estriol versus Tamoxifen....still reading up on that.

Simvog...what about you?

Firni

I too am strong estrogen positive (90%) and menopausal.  So I'll be taking something as long as I can take it.  I'll try anything they can throw at me.  I know some people don't have much for side effects.  Sure, like I'll be one of those.  I can't get past my second chemo without falling apart with SEs.  I too would be interested in alternate treatments people are considering.

havehope

Cebula, lisasayers:

I am still exploring my options but I am inclining more and more to try Iscador (mistletoe). Also I am looking to find a good nutritionist and a good trainer. I was going to gym before but not on a regular basis. I will know more once I will finish chemo.

Texas357

Hey ladies -- I just started a new question but figured some of you might have already encountered this. I'm strong estrogen positive. With the lack of estrogen plus chemo, I'm experiencing severe lack of vaginal elasticity. It's become impossible to have sex even with lubricant! I did an Internet search and confirmed that no estrogen and chemo can be the cause. This is so discouraging! It's not like I can use estrogen again once treatment is over.

On a positive note, I'm through with the FEC! The 3rd and last treatment hit me harder than the previous two. I was so fatigued that I couldn't function for a week, and I couldn't eat solid foods for about the same amount of time. My stomach really hurt! Thankfully I'm feeling better.

I start 9 rounds of Taxotere in 2 weeks. I've read your comments about fingers peeling etc. but I've got to say that just being able to function after treatments would be a significant improvement.

Firni

Texas, depending on you age and where you are with menopause,  the vaginal thing can be temporary during chemo.  Once you're done, things should go back to normal if your pre-menopausal.  If you are menopausal already, it can be a more permanent thing and something to talk to your onc and gyn about.  They might be able to come up with something.  There is a thread called I want my mojo back.  You might check there for ideas.  But it seems like they all just talk about sex toys and role playing.  I too would like some answers that would make things normal again.  This is a very common problem.  Unfortunately there aren't a lot of good answers out there.  You will want to be very careful with sex during chemo.  If you tear the vaginal lining you are very susceptible to infection in there.  Not anything more you want to deal with during chemo.  Where did you post your question?  I'd like to see what kind of response you're getting.

I'm glad your done with your FEC.  I hope the Taxotere is easier for you.  How often do you have those Tx's? 

Lainey64

Hi ladies.  Wow there is a lot of interesting reading here today.  I'm especially interested in hearing about alternative methods you will be using after chemo ends.  For myself, I am Triple Negative so the hormal therapy - Tamox and the other stuff will not work for me so it's not even an option.  I was upset about it at first but I know there's a reason for everything so maybe those drugs wouldn't haven't been good for me anyway.  I cleaned up my diet a lot the past two years and was exercising - strength training and running 5 days a week.  I am going to get back into that routine after TX ends.  I also want to really clean up my diet even more.  I can't do that right now because I'm eating only what tastes good.  As you all can relate!  One thing that that a lot of people swear by is Oxygen therapy.  I am going to start doing that twice a week.  There is no scientific evidence behind it, but people I know swear by it.  So I'm going to give it a shot. 

Texas - WTG on being done with FEC! 

Firni - I haven't done too much research yet on the effects of Taxol.  I know that neuropathy is one of them.  Is it really bad?  I guess I need to educate myself more on that since that will be coming up for me soon.

Lisa - As I said above, I was really upset when I learned I was not a candidate for Tamoxifen.  Would you share with me some of the research you found on it and while you choose not to take it?  I guess it might make me feel a little better since I am not eligible for it.  Thanks!

lktracey

Hey ladies!  Well, I'm gonna toot my own horn here, but darn it, I am excited.

My daughter's school had a basketball game in New Orleans yesterday, then they stayed for the Hornets game (Darn Knicks kicked our butts!).  So, I had decided before #2 chemo to try and go.  After last week feeling like crap, I was questionable to go.  However, woke up yesterday feeling like the old me and made it from noon yesterday till 10:45 pm with only a little fatigue.  Even ate nachos at the game!!!  I took along a muscle relaxer and pain pill for the foob pain about 6:45 pm, since I had a fill last Friday.  Stood more than I thought I could or would, braved the cold outside for the fan fest and all.

I am sooo excited to do something normal again!  Plus, my wig was on the whole time and I must say it was actually sooo comfortable.  I forgot to take it off when I started my bath! I was way self conscious about it, but had a lady ask me who cuts my hair! HA! If she only knew what was or was NOT under that wig!!

Now, I know this is some wrinkle in time, planets aligning aberration here, but I am taking it!!

So, day 8, round #2 and the only complaint I have today is constipation. But, what else is new on that end....

So, sorry ahead of time for being selfish and bragging, but it felt soooo good!!!!!

Now, down to the business at hand... how are we all today?  Sound off!

Lauren

EleanorJ

Lauren, yeah! Isn't it great to have one of those days. I think it's important to do fun stuff when we're able to. I'm throwing myself a party on Saturday! LOL! Seriously, we'll be having a house full and I'll be enjoying it since tx3 is Monday.

Elaine, what is oxygen therapy? Never heard of it before.

Well, my mommy is jumping back on a plane on Friday to help out next week with the kids.

busqueen

Lauren, it is encouraging to know that those great days are possible!:-)  Good for you.

Caroline, DH and I met on eHarmony.  I tease him and tell him he owes me a lot of money because I had been on there for about 3 years, and he was only on for about 1 month before we met!:-)  As far as the homeschooling stuff, I'm just doing the best I can through the circumstances.  My kids are old enough that there is quite a bit of stuff they can do on their own to keep themselves busy while I'm in the chemo pit.  We belong to a great co-op group, so we get a lot of help and support there.

DH has stopped at a rest stop near Elkhart, Indiana because of some heavy, blowing snow.  Poor guy, he really is having a tough trip.  He hates driving anyways, so this is really pushing him to his limits.  I'm sure he'll be a nervous wreck by the time he gets here.  

Lainey64

Carie, how close is he?  I hope he doesn't have too much further to drive.  I hate driving long distances too and I imagine in the bad weather it's really terrible.  I hope he gets to you soon.

Caroline, it's called "hyperbaric oxygen therapy".  You can look it up online for more info.  I am still learning about it myself.  I've gone twice and it was interesting.  You get completely undressed and sit in a chamber.  It's like a pod.  And it's very hot and you sweat ALOT.  There is ionized ozygen that is pumped into the chamber and you hold it over different areas on your body.  When I went I was instructed to hold it over my affected breast, my liver and then up by my throat.  From everything I've learned, cancer cells cannot survive in a highly oxygenized state and they do not like heat.  This process also detoxes your body and you sweat all of the toxins out.  They told me to shower within 2 hours of leaving to wash the toxins off.  I have to say that I did feel really good after the couple of times I did it.  It's a little pricey though and cost about $40 per 30 min session so I am waiting until all medical bills are done until I start up with it again.  My Onc said it's ok to do although there is no scientific evidence to back it up I figure it cannot hurt.  I work with a woman whose husband cancer had gone to his blood.  After doing the oxygen therapy they returned to the doctor and she said his WBC count was up and he looked good.  They swear by it. 

Here is one website that explains it a bit better:  http://www.o2plus.ca/

Bold

Lisasayer, simvog,celuba: I must say that I find this sooo interesting. I know that you are all younger than I. I am 54 years old and that makes a big difference as far as SE are concerned. I will noe take Tamoxifen either. I would not because of deep Vein thrombosis. (Blood Clots)

I know that it is up to each onc. protocol as to what the prescribe. Aromatase SE is leaching Calcium from your bones. It can cause osteoporosis in some woman and can lead to fractures etc... Soooo I do not like any of the choices either. There is a big part of me that says Heceptin is my Big Miracle drug for my type of cancer. Still studying and have not closed my mind to anything though quite yet. But I will keep you posted on my research. I am trying to get a copy of the San Antonio symposium in regards to weakly E+ and adjuvant care.

Apfuentes:You are right that wheat grass gives energy. But it does a lot more than that. It is a concentrated form of the densest green (chlorophyll). It is packed with so many properties that can heal. It does not interfere with Chemo like a lot of supplement do. I would also suggest that you take Vitamin B6 it can help with hand foot as well as some susceptibility to neuropathy. I also take fish oil, Co Q 10, And at least 2 tablespoons of Flax seed everyday (almost) I am not a health nut by any means. But I am trying to change the environment in my body that broke down my immune system that let the cancer get a foot hold in the first place. I also am using a little baking soda to help with PH too.  Juicing is good too. I am to lazy to do it all the time. Its cleaning the damn thing that is hard. I wish I had the type that you could just put in the dishwasher. I think that  once we have won this scary battle that these things will play a more important roll. It is very hard to stay ahead of the toxins that they are using to destroy cell division in out beautiful bodies right now. uggggggg! But some day this will be behind us. RIGHT?

Simvog:What made this last week so horrible. I am curious because Monday I go for TX 2/. My guess is digestive and tired. But I would like to know. GULP. What alternative treatment will you be on.I would love to have more options. Thanks for all you do that helps us all in this journey to health and happiness.

Bold

Sorry by the time I wrote my long comments a lot of what I ask was answered. Please disregard all the redundancy. thanks all have a great one.

lktracey

cebula - I hope you party "like it's 1999" (oops, showing my age there!) Saturday.  Good for you!I will be throwing myself an ending chemo/40th birthday party sometime by May. 

It's too bad we all can't rock a big old "Kicking Cancer's Ass" party together when we are all done!  I would love it!!!

Hope each of you had a great or at least survivable day in the life of the chemo girls.  My constipation has decided to make a new appearance,so I'm battling that What else is new?? 

Knew yesterday was too good to be true, but I'll take what I get these days.

Lauren

bobcat

milk of magnesia!!

berrypatch

Hi Ladies!

Day 14 of TX #2.  Simvog, next one is 1/20.

What a ride this is!  Ended up in the hospital for 4 days, as I had a fever of 100.9.  Lot's of IV antibiotics and I still run a slight fever.  I have felt like crap ever since I had my port put in.  I started a new topic about that in the "Getting Through Treatment" Forum.

Well, I do know what DOES taste good to me during the first few days after tx.  Jello, tapioca pudding, sherbet.  An almost liquid diet, but eaten with plastic spoons!  Gearing up for tx #3, which when finished will put me at the half-way point!  Hooray!

Even though, I have not been jumping in, I do keep up with what's going on with my chemo sisters.  Take care everyone, and may you all have lots of good days!

Carol

havehope

Bold

Yes, it was the tiredness and the fact that I also had a nervous breakdown, which I think most of it was caused by the treatment. My DH said that it was not me talking all those non-sense. I couldn't stop crying and I wanted to die, but not suicidal just the wish to die. All those feelings disappeared on day 4 after tx.  You bet I want to live after I put up with this chemo BS .

I am still exploring my options but I would like to try Iscador (mistletoe). One of my DH's relative was under this treatment and a special diet for 3 years (he still follows a special diet but not as strict as it was under treatment) and he is a 10+ years leukemia survivor. His onc gave him a couple of months to live after he finished his chemo treatment more than 10 years ago. He found another doctor that suggested Iscador. The treatment was done in Germany.

There is more about Iscador under the Alternative, Complementary & Holistic Treatment Forum.

EleanorJ

Carrie, did hubby make it yet? Sweet story

I really need to start taking notes on all these alternative options. I met with the cancer center's nutrionist. So unhelpful! LOL!

Carol, I hope you start feeling better by next week

EleanorJ

Oh by the way, I added a picture of me wearing my wig on my blog (address is in signature). So, I was thinking about wearing on Saturday since we're hosting a party, but now I'm not so sure since it will involve me doing some cooking. What am I supposed to tell my guest "Do y'all mind if I put my wig on the table while I cook?" LOL! Yeah, I think I'll stick with the scarf.

busqueen

Caroline, nope DH hasn't made it yet.  I think the guy's gonna have a nervous breakdown once he gets here.  He only has about 6-7 hours left to drive tomorrow.  Hopefully it will stop snowing for him.  And I know what you mean about taking notes on all the alternative stuff.  It's a lot to process and try to remember.  Right now I can't even remember what I'm wandering around my apartment looking for!

mary5454

simvog- this treatment definitely has an emotional impact. My onc NP warned me about it and the emotions that come rising up when you least expect it. I was wondering why the first week was so hard - it's not the actual pain or discomfort but I believe something deeper. Luckily we get through it and know that we will feel better.

 On a happier note- splurged and treated myself to a bath pillow for my half- bald head! Love it! baths are what soothe me and get me feeling better.

Night all!  

havehope

 Updated list: 

colleen1960            #4 - 2 Jan 09             CMF  

jajebr3                     2 Jan 09                   4xAC+4xTaxol

Lainey64                 #3 2 Jan 09          4xAC+4xTaxol  

Texas357                #3 6/7 Jan 09        3xFEC+9xTaxotere 

iktracey                  #2 6-Jan 09               4xTC 

apfuentes                #2 6-Jan 09              4xTC  

Mandy1313              #3 6-Jan 09             CMF 

Kranie                     #2 7-Jan 09              6xTC  

Bkokie                    #2 7-Jan 09              4xTC  

mary5454                #2 -  8-Jan 09           4xTC

teachgrade3            #2 9 Jan               TC  

mombos                  #2 9- Jan 09             6xTC 

Colleen1960             #5 12-Jan 09           CMF

mmliv                      #3 13 -Jan 09        4xTC 

busqueen                #2-9 Jan 09           4xAC+12xTaxol 

mimiwhite              #3-12 Jan 09            4xTC 

horsercn                 #2 12-Jan 09          4xAC+12 Taxol+Herceptin 

LindaBusEd            #3- 13-Jan 09            6xTAC 

zuffa                       #3- 13-Jan 09            6xTAC

msbusdriver           #3   13-Jan 09               4xTC  

Brenny                 # 3  14 Jan 09               4xTC 

BreastCancerDiva    #4 15- Jan 09               4xFEC+4Taxotere  

Catrenae                #3   15 Jan 09        4xAC+12xTaxol  

Lainey64                 #4 15 Jan 09          4xAC+4xTaxol 

lisasayers               #3-16-Jan 09                 4xTC 

simvog                    #3  19- Jan 09           4xFAC+4xTaxol

cebula                   #3    19 Jan 09               6xTC 

Bold                        #2   19- Jan 09             6xTCH

sdavis                     #3 19-Jan 09        6xTC 

Firni                       #3   21-Jan 09              6xTC

DrDecker               #2   21- Jan 09               4xTC  

ptjen                      #3   21 Jan 09               4xTC

Colleen1960           #6 22-Jan 09        CMF

CindaD                  #3 -22 Jan 09                4xTC 

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

Mandy1313            #4 27-Jan 09             CMFB

iktracey                  #3 27-Jan 09               4xTC  

kokie                    #3 28-Jan 09              4xTC

mary5454              #3 - 29-Jan 09           4xTC

busqueen            #3     30 Jan 09           4xAC+12xTaxol

LindaBusEd         #-4   3 Feb             6xTAC

zuffa                      #4 -  4 Feb           6xTAC

Good luck everybody!

Catrenae

Good morning ladies,

I hope everyone is feeling as good as possible today. I've been reading all the posts and I see that a lot of us are experiencing some really bad side effects. I hope that it all will end soon.

I've been doing ok for the most part, mainly just feeling really tired and dizzy.  Except now I've developed some type of lovely rash under my left boob. I've had it for about a week and it seems to be getting worse rather than better. I've been using Caladryl on it and it seems to help, but it hasn't gone away yet. Also my forehead, face and neck have been really itchy and I'm breaking out... wondering if it has something to do with the caps/do-rags I've been wearing?

I have my 3rd round of chemo tomorrow and will see my Doc. so hopefully will get some answers. 

Oh on a completely different note. We woke up this morning to no water. We did have a light freeze last night but it shouldn't have been enough to freeze up our well. (We live in the country and have our own well.) Hopefully it'll be something relatively simple/minor and not that the pump/motor went out. It's not like we don't have enough to deal with as it is!

Wishing everyone a happy and WARM Wednesday.

Cat

CindaD

Simvog, so sorry to hear you had such a hard time after tx.  Yoga and some deep breathing exercises have really been helpful to me, I just try to push all of the BS out of my mind and move on.  Funny how the chemo affects us all so differently, I'm sure our hormones or lack of, play a part in our emotions.  Hang in there girl and thanks for keeping the chemo list.

Carie, I hope your hubby arrives safely today.

Lauren, I'm so glad you had a great day, I had one of those days yesterday, I had my mojo back and it felt sooooooo good to be myself again!

It's so interesting to read all of your comments on the HRT.  I'm definitely going to try the Tamoxifen and see what my response is to the drug.  Everyone reacts differently to the med, I have friends who have tolerated well, didn't notice any change in thenselves and friends who needed to stop the med.  At this point, for me, the benefits out weigh the risks and I have to give it a shot.

Have a great day everyone and stay warm.

Cinda

EleanorJ

Is Tamoxifen considered HRT? My understanding is that HRT is given to women as they enter menopause to replace the estrogen that is gone, which has a neg. SE of causing BC. Isn't Tamoxifen removing estrogen from your body? Therefore if your ER-, it wouldn't do anything it's already gone?

lisasayers

Caroline, Tamoxifen doesn't remove estrogen from your body.  It works by binding to the estrogen receptor in the breast and other estrogen-sensitive tissues, thereby preventing the subsequent binding of estrogen. Although tamoxifen acts as an estrogen "blocker" on the tumor, it has also show to have an estrogen-like effect on the bone, liver, and endometrium.

mombos

I have had a very frustrating 5 days since Tx 2.  I am a planner.  I had plans!  My plan was to have chemo on Friday, rest for the weekend and go back to work on Monday.  On Sunday I felt a bit better so I thought I would be able to do it.  On Monday morning one alarm went off then two.  I could not move.  There was no way I was getting out of bed.  I told my DH he would have to get the kids ready and take them to school I just couldn't do it.  On Tuesday I dragged myself out of bed and spent a very shaky day at work.  I was so depressed thinking that with each treatment this will likely get worse and wondering where I would be by the end of Tx 6.  Today I am at work and feeling a little better than I did yesterday.

It dosen't help that last year we had a woman here at work who had to have a different kind of chemo and she was able to keep the chemo Friday back to work Monday schedule.  I feel like such a whimp!

EleanorJ

Lisa, so what would be the effect on Tamoxifen on the endometrium? I'm curious since I have endometriosis. Would it make it worse or better? Thanks for the clarification.

Mombos, you're not a wimp, and even if this was the same chemo, different bodies reacts different ways to chemo. Just make sure you rest and take care of yourself.

Day 17 - I'm a WRECK! Today is my last day to take the steroid for my mystery rash. Well, head still itches a bit, worse today. Still some bumps, but mostly cleared. My entire body itches, no rash though, the palm of my hands are crazy. My tear ducts are driving me nuts, they itch so bad, trying not to rub but when I do, they get watery. I didn't get any sleep last night due to the itchyness, I'm so tired right now. Haven't called the onc yet, I'm scheduled to go in tomorrow for my before chemo check-up. I'm scared they give me a stronger steroid I want this to be over, 4 more rounds to go The first time on my last week, I was back to being my normal full of energy self. Well, I think I'll give them a call anyway, next chemo is Monday, I'd hate for it to be pushed.

Lainey64

Morning Divas.  I had a rash too, on my butt cheek!  It was awful and even worse because I couldn't get to it and my DBF had to put cream on it for me.  That was  a new low! Fortunately it went away before my last Onc visit and I didn't have to drop my pants for him.  That would have been so embarrasing.

Today is my Onc visit for my labs and stuff and tomorrow is my A/C #4.  I can't believe it's tomorrow already.  Gee whiz, I spent the better part of the last two weeks sick and now I'm finally feeling better.  I keep telling myself I'm one step closer and that's all that's getting me through this!

Carie, Wow 7 more hours to go!  I feel so sorry for him.  But it will be well worth it once you are two are together! 

Caroline, I love your wig.  You look very glamorous! I hope your rash gets better today.  I know how maddening it can be!

*Hugs* to everyone.  I hope everyone is doing ok. 

Love, Elaine