Has anyone started a forum for Chemo in Dec 2008?

Firni · January 2009

I finally went out and bought some hair today. It's a little lighter than my old hair and it has low and high lights. I was always, shall we say, too frugal, to do that with my own hair. The wig is also styled in a real cute cut that my old hair never would have done. I was able to wear it for almost 5 hours today before it started bothering me. It really looks very nice. I did put a cotton wig liner in it and that really makes a difference.

Carie, your husband probably didn't think he'd have to live up to that In sickness part quite so soon, but it sounds like he's going to be there for you and give you the support you need. And, why wouldn't you have run around naked?? I mean not now, but in a different reality where there isn't BC. I hope you get thru the next few days with as little discomfort as possible.

Elaine, I don't know if there are any non-drowsy anti nausea meds. None of them really make me drowsy anyway. Even Benadryl doesn't make me tired.

Mombos, did you get your meds changed today?

Lisa, I'm glad your arm is better already. It's so hard to remember that things are not the way they used to be and we can't just forge ahead and do as we used to.

Lauren, it's good to hear you're feeling better. You must be to be craving shrimp. That could be a disaster if you're not well.

I hope everyone in that nasty chemo week gets thru pretty quickly.

lisasayers · January 2009

Hi Firni

Well it wasn't anything that I "did". Some people can just be more prone to it than others and mine is running along the "cord" from my SNB incision. I had no open sores or cuts, scrapes or anything. In fact the ER doctor said it was more likely due to having the lymph nodes removed and now the lymph fluid can get backed up and stagnant...causing the flare up.

There are several other women on the board who have had the same thing happen. So now I know when and if it happens again to just call for the scrip. In fact when I see my breast surgeon I'm going to ask her for a scrip to keep on hand.

Firni post a photo when you have time!

Hope you are all feeling better today! TX 3 is coming up on Friday for me!

apfuentes · January 2009

Lauren and I are on the same treatment and schedule and I couldn't agree with her more. Day 4 for me has been THE worst for both treatments, but then day 5 and now day 6, it just gets better and better. The nauseousness and fatigue are gone. My mouth isn't as sore this time around and the only thing I did differently was drink a milkshake during the Taxotere infusion. So if that's all it takes, hey, no problem! :-) The Neaulasta shot didn't give me the aches this time around, but I was proactive and took Tylenol for the first couple days. That caused some constipation (well that and I'm sure the Decadron), but Colace is a wonderful drug and got things moving again!

Hang in there everyone. We WILL get through this and we'll come out stronger in the end.

apfuentes · January 2009

Oh and Lisa - I went through cellulitis (around my breasts, ugh) the last treatment. So now I'm paranoid I will get it again this time around. I sure hope not, but like you said, I think some people are just prone to it. I wonder if I should have an antibiotic perscription on hand like you mentioned, just in case....

Bold · January 2009

Bold here bringing up the rear. I have my #2 on the 19th. My hair is getting weak. I will have to cut it short today and then buz next week some time. Oh Sh@#!

You all have been through this already. It really makes everything hit home.

I have been having headaches every night when I lie down. I am in California and it is very very dry with the Santa Ana's blowing so maybe it sinus. I am on Taxotere and I heard that this can play havoc with you sinuses. Any insight.

I also am in a constant state of hunger or what feels like hunger. It is a mild form of nausea. I think. It just what a needed to help me gain more unwanted weight. I to am meeting with a dietitian on that day on my tx. I hope that she can help me.

Busqueen: How is you DH doing with this. Is he hanging in there o.k.?

I know that this is very hard on my DH, He is so worried and upset on so many levels. I find that I spend a lot of my energy making sure that he is ok. He hate to se me suffer and he seems so sad.

I thank God everyday for each one of you beautiful woman. You are my strength and my humor when I need it the most.

I wish that I was only having four treatment this 6 tx stuff reallllly sucks, I think that I will be all alone on the board. As I started late and will finish later. I am so worried that it will knock me down pretty hard doing all that toxic overload.

I have noticed that my skin is already taking a beating. My eyes are more wrinkled and my hands are red an ruff no matter how much cream I put on.

Bitch, bitch, bitch.............JOY,joy,joy.

Mandy1313 · January 2009

Hi Bold

I am on CMF and will have eiher 6 or 8 tx so you will not be alone. My onc and I have not decided whether I will go for the full 8, but I am in for at least 6. So you will not be alone at all. And you will find that the sisters on the boards check back after they have finished and give alot of support. To a large extent, the wonderful sisters on these boards are holding my hand and getting me through. I could not do it without them.

Mandy

mmliv · January 2009

Bold - I am one of the early ones.... and I suspect we will be holding each others hands during radiation and future meds!!!!! So I think you are stuck with us :-) My skin is also taking a beating :-(

Day 20 TC#2 - I can tell it is time to for the next chemo session; I'm feeling pretty well and I can start to taste salt and sweet flavors; which means I am seemingly always HUNGRY! Though I try not to think ahead to far, I am NOT looking forward to the worst days on days 4 and 5 - sighhhhhh

Mary

mary5454 · January 2009

Bold- we will still be here checking in- how could we leave a group who has gotten us through this? (and we will get through this).

Taxotere does do a number on my sinuses. I use saline spray - helps a bit.

Mary - good luck tomorrow - you are getting closer to the end!

BonnieK · January 2009

Today is day 5 for me after Tx #2 of TC, and this is also the first day I have some energy and feel pretty decent. I'm cleaning closets and drawers and finding lots of recycling along with a few little treasures. The best treasure I found today is an L.L. Bean cap that fits perfectly and is super comfortable for wearing around the house. I love my scarves and hats, but don't enjoy wearing my wig at all. I'm thinking it will just be worn to work and/or occasions that require a little dressier look,

My sinuses are bothered by the Taxotere, too, and saline spray helps a little. The onc said it is partially because the nose hair falls out and makes the nasal passages super sensitive. My mouth feels a little numb or maybe swollen inside, but there are no sores so there seems to be nothing to worry about. Neulasta isn't bothering me too much yet, but last time the aches and pain didn't hit until day 8 and 9. I'm hoping for the best and prepared for the aches and pains if they return. Two more treatments for me and then on to exchange surgery and rads. Anyone else doing treatment in that order?

I completely agree that this group is a life-saver! I've learned so much and it just helps to feel connected to other women/people who are going through the same thing.

Enjoy the rest of your Sunday, ladies.

Bonnie

Firni · January 2009

Hi Bold, Mandy, the Marys and Bonnie are right. I think we're all going to be here for a long time. I certainly can see myself coming to this thread long after I'm done with treatment. How can I not keep up with my cyber sisters?

I know a lot of people are going to be having rads but lets keep this our home base. I'd hate for us to drift apart after all this.

Bonnie, I have 4 more Tx to finish up the end of March. No rads for me. I expect my exchange surgery won't be until May or so.

havehope · January 2009

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

Mandy1313 #4 27-Jan 09 CMFB

kokie #3 28-Jan 09 4xTC

mary5454 #3 - 29-Jan 09 4xTC

busqueen #3 30 Jan 09 4xAC+12xTaxol

LindaBusEd #-4 3 Feb 6xTAC

Good luck everybody!

CindaD · January 2009

Ladies I haven't posted this weekend and was sad to see so many of you had a rough end of the week. I'm day #15 post tx 2 and feel like new. I pushed tx #3 to 1/22 so I could go on a Thursday, it works better in my work schedule. So I'm looking forward to almost 2 weeks of feeling good! I hate the thought of feeling like crap again, I put it out of my thoughts and then I read the boards and know exactly what you ladies are feeling! Just keep in mind that it's worth it!

Lisa, isn't there anything you can do to prevent the cellulitis? Did you go and see a lymphodema specialist?

Bold, I think you're pretty much stuck with us! Hang in there girl. You're never alone.

Hope everyone has a good day, I'm actually going to try to be productive at work today! And I'm going to try a diet Coke, today could be the day that I taste it!

Cinda

Brenny · January 2009

simvog -

just wishful thinking, but you left me off tx3 (TC) on Jan 14.

Brenny

EleanorJ · January 2009

Brenny, wouldn't that be nice! I was just telling hubby that I don't want to have another 4 rounds Had a rough weekend!

lovemyfamilysomuch · January 2009

busqueen, your husband is lucky to have a woman like you. let him take care of you.

Bold · January 2009

Cebula:

I am also e+. I am interested in knowing what type of care you will be doing other than herceptin. I was only 2% estrogen. so I think you are more. How much more. I do not want to do any hormone therapy but I do not want to leave a window open either, I have only had one treatment so I have some time to make this decision. There is one other big difference I am 54 years old. I have not had a period in 10 years. When I got my test result I was shocked that I still have 36% left so technically I am peri menopausal. weird huh?

I think that most of the problems that we are having are not life threatening and we should be glad of that, It is just such a drag that the SE just keep coming.

Remember that we are on a path to being cancer free and thats why we do this!!!!!

Peace and happiness to all my sisters.

EleanorJ · January 2009

Bold, what test did you have done? I'm not sure what my real ER status is. From the biopsy, path report says less than 10%, from the oncotype test, they're telling me that I'm negative. I won't be doing any hormone therapy, I could to be on the safe side, but since my ER is so low if it is + at all, I don't want to mess with SEs. AND, my oncologist doesn't believe in Tamoxifen. He says that 95% of onc believe in it, he has to offer it but he doesn't think that it makes such a difference in the final outcome. So no hormones for me, and no herceptin since HER2-. You still have time to think about this and do some researches. Did you get an oncotype done? Ask you onc about a copy of the report, it might give you more info that you don't have to take an informed decision. Hope this helps a bit.

busqueen · January 2009

Hi everybody. Well, today is day 4 after tx2 and I feel better than I did yesterday but still feeling generally like crap.:-( Just realized that I wasn't able to go to the acupunturist before this treatment, I wonder if that really made that much of a difference? It does seem like most of us have had a rough time this go around, unfortunately. I seem to be developing a chest cold. Sheesh.

Bold, I for one will be around here for quite a while, so don't worry about getting lonesome. If I stay on schedule, I won't be getting my last Taxol treatment till the very end of May. And like the others have said, I think we all have a connection here that will last beyond our final chemo treatment. This has been really hard on my brand new DH because he has not been able to be here to take care of me, which makes him crazy. Like you, I also feel like I spend a lot of energy trying to make sure he's ok.

Firni, the running around naked thing was just a joke.:-) Although, like I said, DH has not been married before, and I have been married and have a 12 year old daughter and 13 year old son that I homeschool. So I knew that we were going to have quite the "adjustment period" even before the BC stuff. He is a great guy though, who loves my kids very much, and I consider myself very blessed.

DrDecker, are you feeling better? I hope so. I will try to let DH take care of me. That's hard for me, because I'm usually the one that takes care of everyone else.

As I type, DH is driving from upstate New York here to Minneapolis. He's very nervous about driving 1200 miles by himself and the weather forcast is not looking so great along the route he plans to take. We would certainly appreciate any prayers and warm fuzzy thoughts you could send his way.:-)

Have the best day you can have.

EleanorJ · January 2009

Carie, how are you handling homeschool & chemo? Of course your kids are much older than mine (4 & 5) but then again, mine are only pre-K & K so I don't feel bad if we skip a few days here & there. Please do share your story between you & your hubby, I'm nosey And it would be a nice distraction to the bad week we all seem to have had I'm a sucker for love stories..

Firni · January 2009

Hi ladies, Well, we had some bad snow this morning and my Look Good Feel Better people did not show up for the class. All the students did. So now I'm trying to reschedule it for Jan. 26. That is 6 days after chemo so I hope I'll be up to it.

I have hand/foot syndrome too. Onc put me on steroids (Their answer to everything) and Benadryl. Now I have to try to not let my hands or feet get overheated, not have any kind of friction or pressure on my hands, no wearing rubber gloves to do dishes or clean (well actually no doing dishes or cleaning), keep my feet elevated, etc, etc. I feel like a disabled invalid. Hopefully this will be cleared up in a couple days and I can get on with things since I'm only at grade 1 with it.

Bold · January 2009

cebula:

I did a boat load of research this afternoon on the benefits of hormone therapy with low er receptors. I read about ten studies. I have a medical background and I can read and decipher fairly well. Let me tell you what I have discovered. It is in our best interest to have hormone receptors as it gives us a more favorable prognosis. There is a new school of thought (2007) that believes that all er+ no matter how weak should be treated! It is a new and accepted aggressive approach that is having a positive outcome in long term survival and less recurrence.

Triple negative as you are being treated is tough. I would ask for a second opinion about your adjuvant care. I am at Cedar Sinai in Beverly Hills CA it is one of the leaders in the nation for breast cancer. My onc. was Sherly Crows and Christine Applegates. She is cutting edge so to speak. The Truth of the matter is there are not that many options. You onc. not believing in tomoxifen is a bit of a concern. As this medication actually binds the estrogen as not to feed cancer cells. (put simply). There is also aromotase base inhibitors that are used in weakly pos er breast cancer. I know that you are worried about side effect of these drugs as you would be on them for about 5 years. But I would like you as I am doing myself to look at these drugs as tool to fight a hard battle. We are both grade 3. I am not suggesting that you do hormone therapy but I would just like you to do is maybe get a second opinion. (not mind Laughing )

blah blah.

Fiirni:

Damn girl. I am so sorry. I would use frozen bags of peas for about 15 min intervals. Good grief huh? I take B6 vitamins to help prevent that. It is proved to help. I do not know if you take them but you can ask your onc. what they think.

I am one week till #2 so I will start my wheat grass. I hope that it will help with any digestive issues as last time was hell. I also am now on a supplement called natures trinity that should help put some flora and fana back in the digestive track.

Cut about 12 inches off my hair and I of course love the way it looks short. I wish I did not seeing how I will only have it for about 4 or 5 more days. Oh Boy!

In Solidarity

Lainey64 · January 2009

Hi ladies. It's day 11 since TX #3 and I'm feeling better..finally! Ok, so now I have 3 good days until #4. I've noticed that as TX's progress my "good days" are becoming fewer and fewer. I've got my sweet tooth back so I know I'm feeling better. I have a new list of quesions for my Onc on Wednesday! I'm so glad this will be my last A/C and I can move on to Taxol. I've read a few places where women actually find the Taxol easier. I'm hoping and praying that will be the case for me.

Carie, sending prayers your way that your DH makes it to you quick and safely! Please let us know when he gets there. I bet you can't wait to see him!!

Firni · January 2009

Bold, I did use cold therapy during infusion this last time. I also started B6 right before my last treatment. I didn't do anything to prevent this the first time and I didn't get it. The second tx I did everything I could to prevent it and got it anyway. Go figure. The steroids are already working and the rash and red patches are going away. Hopefully there will be no peeling.

Carie, I saw the weather forecast this morning and it didn't look pretty. I hope your DH just holes up somewhere if it gets too bad on the roads. It's better to get home late and in one piece. He has my prayers.

Glad you're back on your feet Elaine.

EleanorJ · January 2009

bold - I wish you didn't ask me about hormones! LOL! I was happy not taking them, now I'm not so sure anymore... What are those studies you read? I was under the impression that I couldn't do aromotase base inhibitors because I'm pre-menopause and that my only option was Tamoxifen. I guess I can look for a second opinion, I've already gone to Hopkins which if I'm right, he says I'm neg. therefore no tamox, I'll call and ask for a copy of my file. Hate being on this bordeline and not knowing for a fact!

Elaine, enjoy the 3 days, and as you get sick through your next tx, keep in mind it's your LAST AC

Firni, why did you take all those precaution if you didn't have neuropathy with the first tx? I'm just curious.

Bold · January 2009

celbula:

You are right about aromotase. I forgot about your age. I really respect John Hopkins. I am confused you said that you have 10% that is not negative. It is referred to as weak. Hopkins considered it negative? Is that the facility that did nor believe in tomoxifen? As you know a institution like John Hopkins uses a protocol that is followed by all their onc. I believe they have a tumor board that would discuss you case and make recommendations on your pathology. Sorry about all the questions. I am just concerned for both of us. I want to battle this once if at all possible.

I want you to know that I respect your decision and that it is a very personal thing. I have not even totally made up my own mind yet. I only have 2%. But I love the fact that there are options that can stop this freaking cancer in its tracks. I agree with you on the borderline concept what happens a lot of the time is that they do not know either. Everything seems like a guess. I suppose we have to just follow our gut feelings. It is enough to make you crazy cuz the stakes are so high. I will not bug you any more. I will try not to bug me any more too. Innocent

apfuentes · January 2009

Bold - Regarding your comment on wheat grass...what is your reasoning for taking it? I bought it more for energy after reading a book suggesting it, but I'm curious to learn more. I'm one of those "half-ass" health nuts, haha. I try to get more into it, but then I fall off the wagon very easily.

Well I thought I'd get away with no bone pain this time around, but here I am on day 7 after TX#2 and it's starting. Sigh. Guess I will take Tylenol proactively for the next few days.

Does anyone know if strength training the chest muscles can do harm after double mast with expanders? I don't do anything real heavy, but my last infection occured the day after I went to the gym and worked out my back and biceps (which caused strain on my chest muscles). So of course now I'm paranoid.

Okay, done with my rambling for today. :-)

colleen1960 · January 2009

Just got back from tx #5. Hoping the SE will not be has bad as they were for #4. Saw the onc and she said that my count was low, but still safe to get treatment. But she did say that if they do not go up by the 22nd I will have to delay tx and come off the trial. I am really hoping that does not happen. I really want this to be done. That would delay everything. Surgery on 3/23 and a trip sometime in April. But whatever it is I can't drive myself crazy about it. Hopefully the count will go back up. I have not been on all weekend and I was sorry to see that so many of you are having a rough time. I hope all of you are having a better day today and I will check back in tomorrow. Have to go and see if dinner is ready.

Colleen

EleanorJ · January 2009

bold, I hope you didn't take my comment the wrong way! You're not bothering me at all. If you have info that I don't know, please do share. I'll recap my situation.

biopsy path report says ER+ 10% weak

final path report says ER+ < 10%

oncotype dx says ER-

Hopkins was my 2nd opinion, he's considering my weak ER+ as a negative and if I'm remembering correctly he's saying no hormones as I'm really a negative.

My current onc is the cancer center here (Hopkins is in Baltimore 1+ hour drive, ok for opinion but not tx!) is the one that doesn't believe in Tamoxifen.

Do I make more sense. Please, help with any info you have!

havehope · January 2009

Bold, Cebula:

Like Cebula, I had some discrepancies with er+. In the end the verdict was that I am weak er+ and the pathology group from the hospital did not recommend hormone therapy. My onc already told me that after chemo I would start the Tamoxifen. I didn't tell her yet that I am not taken that route. I read about it and the fact that in some cases it increases the chances of recurrence (recent studies as of 2007 show that) plus the fact that in my case I believe the risk of SEs are higher than the benefits I decided not to take it. I am thinking of taking the route of alternative treatment. This is my choice and I am not recommending this to anybody.

Day 14 Tx2. I feel almost normal. After a horrible first week, slowly I came back to life. I sure don't look forward to TX3.

Good luck to all december divas!

lisasayers · January 2009

Hey Simvog....I have done and am still doing research and like you, have decided not to take Tamoxifen. That is my choice and I'm not telling others to do it....but I have to do what feels right in my gut.

TX3 is this Friday for me...then only one to go!

Good luck to all you ladies getting treatments this week...

Has anyone started a forum for Chemo in Dec 2008?

Comments

Categories