Starting chemo Thursday, May 31 - June Group?

Marcia1111

StephanieJM - Don't feel like you're the only one who had a rough time with AC#4.  I took twice as long to recover as I did the other times.  I am hoping that Taxol on Thursday will be easier.  I hope you feel better soon.

maa - I agree with ElleBee.  It sounds llike a vacation could do you a world of good, unless your cancer is very agressive.  If you trust your MO, I would say to go with his recommendation.  

maa764

according to the report from when I had the lumpectomy my margins were clear 1 mm out from tumor and I was told that was very good - it was not in the lymphnodes etc.  Surgeon told me all cancer was gone from the site and breast (so is that not true?)

The onc did not seem to have a problem with me waiting until after vacatation for treatment - it will be treatment#4 of 6.  The surgeon just wants to get surgery sooner then later. 

I am def. going thru with mast. so she should be happy about that - as she was not happy that I did not get the genetic testing earlier but by the time we even talked about that it was a week before my surgery and the results would not have been back.  Since my sister passed away it was a bit harder to get the records we needed.  My dad and I both signed papers and the gentic counciler was able to get them from the lab.  That was easier to test me based on what she had.  I only knew she had a gene no idea which one and when my mom had ovarian cancer it was 20 years ago and they had no testing back then. Only told us to have ultra sounds every 6 months to make sure we were not developing cycts etc.  

It has been one hard decision after another.  I don't want the cancer to come back anywhere but I do need to get away for a week and relax and feel good my family needs it too.  If I was to get my treatment on the tuesday that I normally get it - I would only be 4 days out and that is the worst week for me - usually don't start feel normal enough to eat a full meal until day 9 - none of the nausea meds are doing anything for me and I am on ativan as that is the only thing that calms my stomach down.  I have a very sensitive system and alot of drug allergies so it has been difficult to get me on the right medications.

havingfaith

maa-Sorry that you are going through some hard choices, I do think Ellebee has great points.  It is all a personal choice. I went on a small vacation after #3 and besides being tired I did ok. Good luck with what you decide. 

I should be getting my first taxol today, but my platelets are to low so I'm waiting a week.  I'm not to upset. I don't like the idea of one more week added to the end, but I do like the idea of getting the a/c out of my body more before adding another.

StephanieJM

maa- Sorry that you have to make this difficult decision.  Can you get your surgeon and onc. to talk with each other and give you more information.  You didn't say if your vacation includes flying on a plane or how big the trip is.  I definitely would NOT fly on a plane, too many germs flying around. I know how disappointing canceling your vacation would be....... almost a year ago we made plans for a fishing trip to Alaska with extended family members, flights booked, cabins rented, cars rented and then this happened, so I had "bigger fish to fry", pardon the pun.  My husband was ready to cancel, after weeks of pleading they all agreed to go.  I would feel even worse knowing they all missed this trip because of me..... so they went last month as planned.  One of our daughters stayed with me..... it really brought a smile to my face just laying here talking to them several times a day and hearing the fish stories.  My husband caught a bad cold on the plane home!!  We did get a family camping trip in before they left, so I could lay around in the trailer!!  We also hope to use my cancelled ticket and go to a sunny spot somewhere after chemo and before radiation.  I just felt that a trip was something that wuoldn't change my life..... chemo IS changing my life!!!  I agree with Elliebee.... when I get through this I will have a lot to look forward to!!  But this is just my way of handling it, no one knows what another is experiencing so you have to make the decision.  I feel strongly you need more info from your medical team and they need to communicate with each other so you are comfortable with your decision!!  And possibly you can make some compromise with your vacation plans.  I know you will make the right decision for you.  Bless you.  STephanie

KeepMoving

StephanieJM, I'm sorry.  I should pay better attention.  You're not a whimp.  I just got lucky with this 4th AC.  It's nothing that I did.  I hope you feel better soon!

maa764

I will be driving 2 1/2 hours to my vacation - no flying - it is a relaxing week at the shore in new jersey.  I have been looking forward to going all year and my kids also look forward - and they will not go without me.  I need to relax and get away and from talking to the onc. he did not seem to think it was a huge deal - the surgeon is the one who made a huge deal out of it and had me in tears. 

I had treatment on Tuesday this week and so far I have been sleeping alot more then normal - I missed a week of treatment because  of platelets and when I told the surgeon that she said you should not miss treatment because you don't feel well.  I said I felt fine the platelets dropped and onc said no treatment so somehow that was my fault was how she made me feel.  I like her as a surgeon but no bedside manner at all.

KeepMoving

I saw my MO today and asked about the supplements for neuropathy and she must be conservative, too, because she won't allow me to take any of them.  Just let her know if I have any neuropathy and where.  She also warned about possible bone pain like a bad flu.  She said it's fleeting though.  I'm still nervous about Monday, but can't wait to get this 2nd part started.  Hope everyone new on Taxol is doing well.      

Ellendou

Its off to the BGC for me tomorrow.

mom24boyzs

I'm off to the BGC tomorrow too. I can't seem to sleep tonight, guess I'll just have to sleep there!

Marcia1111

KeepMoving - I had my first Taxol yesterday.  It wasn't bad.  I was warned that during the infusion I might get an awful hot flash and severe back pain, but I had neither.  So far, I feel fine, except for some very minor stomach cramps.  I'm hoping that I continue to feel good and I wish the same for you!

Ellendou and mom24boyzs - good luck in the BCG - wishing you minor SE!

ElleBee

Good luck starting Taxol this week ladies! Keep us posted on how it goes!

ElleBee 

pamelahope

Hi all! I am 8 days out post taxol. I am doing so much better on taxol. It is nice to have some time spent outside the bed!!!!! The metal test is gone. I can drink water. It is still chemo so days 3-5 I am in bed. However, I have so many more good days.

Keepingmoving, the aches your doctor spoke about are real. However, it only lasted 4 days are so. It was not severe but mild to moderate. It was not pleasant but I bet a Tylenol or ibuprofen would have helped. I did not take anything.

Marcia, Good luck with taxol. Let me know how it is for you.

Ellebee, How are you?

Mom24boys, Goodluck in the bgc!

Stephanie, Doris, Ma, radioactive, keeping faith thinking of you!

Pam

DorisMarie

Hi ya'll..thanks for thinking of me Pamela..day 9 from tx...usually by this time feeling purty good...red counts aren't comming up very fast this go round..the fatigue (bed rest) lasted a wee bit longer..have the faster heart rate now..and long as I am a lady of leasure..all is fine..but the least bit of doing anything and I'm beat...thinking of hiring some house help..hubby tries..but..I used to say I stay a step ahead of the health dept. on the cleanlyness thing..I'm losing ground now..LOL..

I come in every morn and read the board..don't post much but wanted you ladies to know I think of all of you..

best wishes for the day..form the couch ornament..LOL

steelersluver

Maa764, I'd also have to agree with Ellebee on her adice being sound (as usual)!  I was on vacation this week and chose to come back mid-way through the week to get my scheduled treatment.  While I never considered doing anything else, I wouldn't think anyone was out of line for putting one off a week if it was OK with their oncologist.  I've chosen not to take Nuelesta, so I'm always on the edge with my numbers being too low, putting me at risk of missing a treatment.  So far I've gotten the 3rd AC in without having to miss, but I have to get my blood drawn right before chemo to catch the numbers up. I'm sure I'll be kicking myself if I end up having to delay over it, but for now i'm glad to avoid another source of side effects.  

The mastectomy is another very personal choice, though the positive genetic and grade 3 do have to weigh into it.  I was grade 2, but had multiple small tumors on one side, and several lumps on the other, so I opted for bi-lateral rather than uni because I did not think I could emotionally handle the constant worry about the remaining side and cancer returning.  I wanted to be able to face my kids and tell them I'd done everything I could to prevent a recurrence. I did have the tissue expanders, and I can tell you getting the fills done while going through chemo is a royal pain.  The timing has to be just perfect and something always seems to go astray.  I told the plastic surgeon I was done, I didn't want any more.  She asked me to sleep on it as she advised at least one or two more fills, so I called back today to scheudle one more. 

 Anyway, round 3 of AC for me is done, and I feel about the same as after #2 for now.  My port closed up again which made for a very long day.  They aren't sure why mine keeps getting a tissue flap over the end, but at least it seems to clear with the TPA (whatever that is) each time. I'm vegging out today watching some olympic action! I find it funny that I feel more tired than the athletes look when they finish!

Marcia1111

Pam and ElleBee- So far Taxol is so much better than AC.  I feel fine!  I hope it continues!  For you too!

ElleBee

Yay Marcia!!!!! SO SO GLAD!!! I think you will be able to go back to work with no problem!

I have to update all of you soon. Just a super busy week....semester ending so I am in grading hell. My hubby is bringing me sushi right now on his way home from a golf outing. WooHooo!!! Haven't had it in ages. Willing to throw caution to the wind and risk food poisoning....quality of life matters right now. It's been a rough week....feeling a bit blue and unhappy with the realization that I am only a small way into this whole experience. I am over this. The novelty wore off. I don't want to be the girl with cancer anymore.

*sigh*

All my best ladies...ElleBee 

pamelahope

Marcia, So, so happy for you. Keeping my fingers crossed.

Ellebee, Too funny with the food. I had sushi tonight. If my wbc is low, I abstain, otherwise why not. I had it like three times last week. I agree with you about the treatment. It is lengthy and long. If it helps, I got a card from a bc survivor this week. My sister's sister in law, she wrote that when we are going through treatment it seems like it will never end but she reminded me that there is a light at the end of the tunnel. You can do it. We are all going through this long, arduous, treatment process together. We will get through it. Try not to think of how much more treatment is left. I do numbers on myself that way. I also notice when I am fatigued my mood goes down. Anyway, here is a virtual hand to pick you back up for all the kindness and support you gave everyone else when they needed it. You will be okay and you will not be in treatment forever even though it certainly seems like forever right now.

Pam

steve-billiemae

    Everyone,

  Clearly fear is not an option! Even though Billiemae has suffered from what I would call extreme side affects with both of her previous infusions, shes no quitter. Had treatment 3 of 4 Friday.... I'm not sure if I agree that taking 2 extra rounds of Neupregin will keep the infections at bay, but time will tell. I'm packing her bags ahead of time so that theres not last minute scramble in the event of another hospital stay. There was some great news  from her ONC, when she completes her last treatment they have her scheduled now to meet with a surgical team for her new boobs!!! Very exciting...hope it will make all the suffering worth while for her!!!

  Your all in our prayers,

Steve 

SpecialK

steelers - the  tPA you were given is "tissue plasminogen activator" which is given to stroke victims if you can get to them quickly enough, and it is used to dissolve clots - it is a wonderful drug and has made a huge difference in how much permanent damage is left after a stroke.  They are using it to clear your port line.  Just wanted you to know!

Ladies - I understand the lament of feeling like you still have so much treatmnt in front of you - the good news is that when you are done you will look back and be proud of yourselves for getting through it, you will start to feel more like your old selves, you will feel a bond with each other and such gratefulness that you were here to support each other when you were all experiencing such a difficult time.

Glad those who have moved from AC to Taxol are finding it easier!  Just want you to py attention to any tingling or numbness you start to feel and please be sure to mention it to your MOs.

maa - your surgeon probably should not be trying to do your oncologist's job.  Just sayin... 

pamelahope

SpecialK, Meant to tell you that you were right on with the icing. I am so thankful I did. I iced my hands and feet. I took my phone out during treatment a couple of times and typed with my thumbs and it was amazing but a few days after treatment my thumbnails were the only parts of my hand that hurt!!! Next time, I will be more diligent!

Hope you are doing well!

Pam

maa764

If my treatment was not 4 days before I was going to leave for vacation I would not put it off - but I know how horrible I feel after treatment most of the time it is 9 days before I can eat a full mean and spend most of the time in the bathroom - not how I want to spend my vacation.  I need the mental break as well as does my family.  I had treatment on Tuesday this week and I can barely stay awake, stomach hurts all the time - nausea meds do nothing - I take zantac at night and that seems to help but I can't eat much and pretty much feel like I have been run over by a truck.

Kimmie0247

Is it me or does anyone else feel the need to ultra clean your home the day before you have to sit in the BGC??? I'm always scared my house will be dirty and something will happen to me lol

SpecialK

kimmie - I always did that too - also paid all the bills, got all caught up on laundry, stocked the fridge, gassed up the car, etc. - kind of like "nesting" before having a baby!

Kimmie0247

SpecialK- that's exactly what I feel like I'm doing- nesting!

SpecialK

kimmie - all of us in the Feb. '11 group did it too!  I think it helps you feel prepared for the BGC because those little things aren't in the back of your mind - I always rested easier after chemo because I wasn't thinking gee, I should have done.....

Marcia1111

ElleBee - I'm so sorry to hear that you're feeling down.  You have been such a positive influence from the beginning, but you are as entiteled as the rest of us to feel down.  My worst, most depressing moment, aside from initial dx, was at the midpoint of chemo.  I think that's very common.  It seems as though it will consume our lives forever sometimes.  My husband keeps telling people that I'm almost done.  I don't feel that way.  Yes, I only have 3 more chemo treatments, but then I have radiation and my exchange surgery, and I'm not sure if I will have to take Tamoxifen.  Oh - wait a minute - I was supposed to be cheering you up, not dwelling on me!!!!!  Sorry!  I hope you are feeling better!

Pam and ElleBee - SUSHI!!!!!  Yum!  I have been abstaining, but I do have other guilty pleasures that are probably much worse.  For example, I do like to drink socially and have indulged more than once.  That is one lifestyle change I am not willing to make.

As far as the nesting - I do tend to try to get as much done the day before treatment as possible.  However, this last treatment found me at the beach the day before.  I got there right after my NP appointment, around noon, and I stayed until 5 pm.  It was heaven!!!!

Marcia1111

I'm not sure if it's the Taxol, the Neulasta, or what, but I could not sleep a wink last night.  Boy am I glad I don't have to work today!  I will be going back on August 14th and will be hitting the sleeping pills if this happens again!  I have had some se from the Taxol, including bone pain and some tiredness.  I did have some neuropathy, but I had it with AC also.  The sleeplessness is probably my usual insomnia, amplified by the bone pain.

SpecialK

marcia - my MO said If I wanted the occasional glass of wine (or sushi as long as WBC are good!) or whatever, during chemo it was just fine.  My taste buds were pretty severely off so wine tasted weird to me.  I did have some champagne at my MIL's b-day party and it tasted good!  Just be aware that Taxol is filtered by the liver as is alcohol. 

ElleBee

Hello everyone! I am doing better. Just had a rough couple days with some increasing se's....mostly tummy troubles and bone pain...and fatigue. And I was drinking water like a champ! But I also over-indulged in some wine and craft beer...not excessive, but a few nights in a row. And I paid for it. I have not totally given it up either, just cut wayyyyy back. But last week I had a few social opportunities....lesson learned. My mood is better the last couple of days. It just feels like such a LONG ordeal. I will take the advice of someone and just live more in-the-moment, and stop thinking so much about the future. I think part of my "blues" was due to knowing that I am nearing the end of easy breezy taxol. I am really anxious about AC. I don't want to feel like crap. But that is a month out yet. SO STOP STRESSING, right?! Sheesh!

Let me share another lesson learned. Regarding toenails. I made the mistake of wearing a super cute pair of flats that are tight in the toes, and was on my feet in them for 8 hrs. My big-toe nails were so SORE after that. The pain continued for a couple of days. So I removed my polish to take a look at what was going on. Well, they are both discolored, and the left one (which continued to be sore for over a week) looked like there was bruising at the nail bed and at the growth plate. And it feels sort of loose. Not sure if I will lose one, or both. But be kind to your tootsies. Even if your shoes are FABULOUS, if they pinch or hurt, toss them in the back of your closet until this is all over. 

Kimmie and SpecK: I have that nesting thing too! Last week my 4-year-old and I spent over an hour cleaning out one of the cars....like that really needed to happen on a 90+ degree day! Tuesdays (the day after BGC) are my best day, and I usually spend the day grocery shopping and cleaning and cooking. My husband comes home from the golf course all amazed! 

maa: I am right with you girl! I know what you mean....you just need some NORMAL. Some HAPPY. The distraction of my vacation was so wonderful. I could forget about cancer for hours at a stretch. My kids were happy, my husband was happy, I was happy. It was amazing. I hope you go, and I hope you enjoy it. When I asked my onc. about skipping a week for vacation, he said "well, it won't kill you to miss a week"...which I laughed out loud at! First time I ever heard that expression in the literal sense! And I could not agree more with SpecialK...your surgeon trying to do the job of your onc.

Marcia: The sushi was amazing! I have not had it since before chemo started. It felt so good to indulge in one of my favorite things! And the bone pain only happened for me the first week or so....it was in my pelvis. Well this last week it came back in my forearms, shooting down to my wrists. But I think it's because of the wine/beer...probably gave my liver too much to work on and got a bit toxic. Push the water, and hopefully that s.e. will go away like it did for me.

Pam: thanks so much for the support and encouragement. It is awfully easy to start feeling worn out sometimes! You reminded me to just stop fretting, live in the moment, and enjoy today.

Steve and Billiemae: I hope all goes well with the infusion. NO MORE INFECTIONS! Glad to hear that Billiemae is fighting hard! Keep us posted!

Doris: have you looked into those cleaning services who will clean your home for FREE while on chemo? My sis-in-law has set that up for me. I just have to schedule the first one.

I wanted to type more, but the Benadryl in getting infused at the monment. Feeling my eyes droop. More soon! Thanks for the support girls! Your replies helped me get through a rough weekend!

Much love to you all- ElleBee 

StephanieJM

Good Morning All

Maa764- regarding stomach issues, I had this first round of A/C... onc nurse said take Zantac morning and night constantly, don't wait for it to start and if this did not take care of it she would put me on Prilosec.  It did take care of it, also last thing at night take a spoonfull of Maalox, as it coats the stomach.  Honestly.... in six weeks I have not had a problem doing the above.  So give it a try.

Today is day 56 for me and the halfway mark, tomorrow I begin Taxol, 4 times at 2 wk through Sept.  I have tried to read about taxol and seem to have more questions than answers.  My onc really hasn't given me much information other to day it is easier than a/c with OTHER se, I am sure I will get it tomorrow as they always tell me a lot of info.  I have a list of questions.  Reading the posts some of you have mentioned steroids, decadron and benedryl...... I think there was something else about a side effect during the infusion.... was it headache??  Chemo brain here, if I don't write it down can't remember it.  Way too much information.

Ellebee- regarding the cute shoes.... (oh, I LOVE cute shoes!!!)  I did the same thing last fall, long before chemo and actually lost my toenail, it turned so black and blue.  During chemo I wore another pair that pinched my toes, and had a sore just from the toenail touching the skin..... so feet are very sensative.  Can't believe even the paper cuts I get opening the mail.

Hope everyone has a great day with minimal se.  Someday this will all be a blur in our memories..... like labor pains!!!

Love to you all, Stephanie