The Chemosabe March Cruise
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I'm sorry Patti - I didn't mean that your PS shouldn't be telling you about your implants. I had just thought it surprising if he was telling you about your need or lack of need for radiation. I am so glad you have a great team that you feel is doing all the right things - that is priceless!
Sorry for any misunderstanding -
Lisa -
I'll be getting #10 on Tues. My SE are increasing. I also have lymphdema. I am really dreading the FEC that come next. I want this nightmare to be over!!! I know all of you do too.
I also want you all to know that I ask God for all of your healing every night. I know that prayer works and you are all in my prayers. I can't call all names but God knows who you are when I pray for all the women on the Breast Cancer.org boards.
Love to all. Be strong. Be brave. BE WELL
Bettye -
Hi fellow cruisers,
Had my lab work today and after 4 days of neupogen shots my white count hasn't budged even a smidgen. I was so shocked. My response was so amazing last time and I even asked the nurse if the response is usually the same each time and she said yes. WTH? My onc wasn't in the office today so the other onc told her to give me another neupogen shot and recheck me on Monday. I feel so vulnerable with such a low white count. Plus, my red count has dropped a bit, so I just feel all out of control. Silly, huh?
While I was there, I overheard a woman on her cell phone telling someone she was going to the hospital to have a transfusion because her red count was low and would just get lower so why not just get it over with. What was so amazing to me was how upbeat and matter of fact she was, like she was talking about going shopping. And, here I was working at not crying because the neupogen didn't work. I'm seriously not emotionally cut out for this cancer business.
LisaSDCA - thanks for the link for the glutamine you take. I ordered some from there yesterday (I think, lol). The info about the product said it helps raise white counts. That would certainly be wonderful if it's true.
Bettye and Dawn (and everyone else) - so sorry for the se you're having. I second the motion to have this nightmare be over with.
I hope everyone has a wonderful weekend and feels much better!
Cynthia -
Real tired so just a quick note about rads. When I was having my last infusion, and oncology social worker came in. She actually tried talking me out of rads. Told me to do some research because she did not feel they were necessary after chemo. Said rads do alot more damage to your body then you know. Told me research and make sure I am totally fine with my decision. I havent yet, as I have awhile to go to get to rads but made me wonder.
Dawn -
Bettye,
How many treatments are you scheduled to have? I'm sorry to hear your SE are increasing. You're right abut wanting this all to be over. Sometimes it really gets to me!
Cynthia,
I get the Neulasta shot the day after chemo, but a week later my white blood count is always low because it hasn't had a chance to work yet. I wonder if the Neupogen shots work the same way? Maybe it just hasn't had the time needed to boost your counts yet. My counts have always been good enough in time for my next chemo.
For the last two nights I have been running a fever that was right below 101. Both nights I have become terribly weepy. I wake up the next morning and my temp is normal or even low. I have no clue about the fever, but assume I'm okay since it's not lasting. Will definitely tell my onc.
Dawn,
That is interesting that a social worker said that to you. I wonder how much rads do help... percentagewise. My left breast was removed so I know my heart will be effected. However, I have done everything I was told to do so far. I don't know if I'm brave enough to decline rads. I'll have to check it out further.
Happy Mother's Day to all the sweet mothers out there!
Miss S -
Sorry I haven't been around. It's been a crappy week. Had treatment number 3 of 4 on Friday (5/11). Good news was, my onc said I didn't need the neulasta shot this time because my blood counts have been really good and she didn't think I needed it.
I'm achey today, very tired and constipated despite taking precautions. Compared to many of you here, I feel like such a wimp. One side effect I hadn't counted on through this was the emotional rollercoaster I feel like I've been/am on. Tears are never far from the surface and I find myself crying for no reason sometimes. Maybe it's just me. At least the chemo is almost over. Hopefully rads will go better.
Hugs to everyone and hope the SE's are getting better for everyone. -
Jann, the tears are normal. Chemo messes with every system of your body. You are tired, weak, apprehensive, hormones are out of wack - of COURSE you are going to be emotional! The good news is, this too shall pass and as you regain your strength and the se's diminish, so will the tears. Hang in there - you can make it! Hugs Jacque
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Happy Mothers Day !!!
Nancy -
Dearest Jann .{{{{Hugs}}} What you are feeling is definitely normal. The reason this board is so valuable is because it is a place where you can come and express your fears and concerns and everybody gets it. We have all had our down times and if we didnt there would be something wrong with us. Its okay to be angry, fearful and confused. We were all living our lives and then were kicked in the butt with this diagnosis, then we started this whirlwind journey..with little time to get our arms around it. The female genders trait of quiet strength is what gets us through this. Weve all cried a million tears and yes they come out of nowhere. We will come through this we will probably cry a million more tears we will probably ask why me a million more times .we will probably be different people at the end of this journey. You are not a wimp you are normal.
Hope you are feeling better and that the ses are diminishing. Do something special for yourself. Know that we are all on this cruise together you are not alone.
Prayers,
Nancy -
Hi, cruisers --
Loved reading all the reports of long-term survivors, especially the woman who was receptor negative!
Part of the reason I've been away a few days was that I was feeling weepy and emotional -- I should have known that I'd have lots of company here. What a roller coaster!
Yesterday kind of snapped me out of it, though. DH and I spent 11 hours at the hospital with #1 son (27) who ended up having an emergency appendectomy. Normally your appendix is about the size of your pinkie; the surgeon says his was the size of a bratwurst -- that's from neglecting the pain too long. He was very lucky it didn't rupture. She expected him to spike a fever "because of all the mucking around we had to do in there", and he did, so I'm not going to rest easy until that's down. Plus I can't see him again until it's down. What a start to the Mother's Day weekend!
I'm just very grateful it wasn't worse and I was able to spend yesterday with him. DH took my son to the ER, with both of them telling me to stay home and rest. But after a few hours of vague reports of what the docs were saying, I drove over there myself and stayed. I wouldn't have been able to do it last weekend.
On the rads discussion, I think the grade of your tumor has a lot to do with the decision too. If it's at all aggressive, they want to zap it every which way they can. It's still not something I look forward to.
3boys -- Sorry you're dealing with the hand-foot syndrome, and I hope it doesn't cause more problems with your treatment. Your post got me hunting for more information because the bottoms of my feet have been hurting, and while I thought I had neuropathy in my left hand -- tingling, burning, very sensitive -- suddenly the skin started peeling off my fingers. Usually people get it on both sides, but I had nodes out on the left side, so maybe my body couldn't fight it off on that side.
I read some research that Neulasta might be to blame (or in combination with the chemo). I'm thinking if my white counts get high enough next time, I might pass on one shot and see if my hand gets better. They were higher last time than they've been in several weeks, but I won't fool with it if they're not up there again.
Cynthia -- Sorry to hear your blood counts aren't cooperating. It's so upsetting when we're doing what we should and it's still not working right.
Lisa -- Thanks for the link on the glutamine -- that is a lot cheaper! My hand did start feeling better after I took it, so no matter what the problem is, I think it helped.
That poem got me all choked up -- thanks for posting it.
I don't know if Kaiser operates differently in California, but in this region, the DIEP reconstructions are done only at Hopkins, which is Kaiser's local tertiary center and which has a big breast cancer center. You definitely want someone with lots of experience on that one! Maybe you could work backwards -- find out which big hospitals Kaiser uses and see who does the DIEP there, then tell your local providers about it.
Melissa -- Is the new med working on your infection? That can be scary when you don't have the confidence that your body can fight as well as it used to.
Diana -- Loved your pic from the Pink-Out and I'm glad you were able to enjoy it too!
Nancy -- How is your hand doing? Have you read up on any of the lympedema sites yet? One thing they recommend is keeping your arm and hand elevated above the level of your heart for periods of time (lots of pillows at night) and light stroking of your arm, in one direction towards your armpit, to get the fluid to drain back into the system where it belongs.
I'm back to a Thursday treatment next week -- #2 Taxol (tx 6).
Patti -- Sorry to hear that truck ran over you, but it's wonderful how your kids responded. That's wonderful about the church yard sale, too.
PW -- I'm so sorry to hear about your friend. Keeping you and her in my thoughts.
MissS -- Wonderful news about the ADA!! It must be a great weight off your shoulders.
I hope that fever goes away and stays away!
Angel -- Nice to hear you've been having some good days and you're able to get out and about.
jann -- You are definitely not alone on the emotional rollercoaster! Great news about the blood counts!
Rosebud, Dawn, Bettye -- Hope all your SEs calm down and you feel better.
Happy Mother's Day, everyone! -
Happy Mother's Day to all the very precious moms who are struggling through breast cancer and all the other things mothers have going on all the time. Relax and let your family pamper you and enjoy the blessed gift from God that is Motherhood.
Miss S -
Hi, everyone - Happy Mother's Day!
Sorry that I haven't posted in awhile, it's been busy the last few days. I've been feeling better, so have tried to get a lot of errands and shopping done before treatment again next week. Wouldn't you know, after looking forward to this week when I can usually eat normally, I developed a really bad sore in my mouth. So, today I have been using the gross cocktail that my onc prescribed, plus Biotene,and salt water rinses. So far nothing has helped - even kept me awake last night from the pain. Oh, well---this too shall pass I guess.
Please make my bar reservations for Wednesday, May 16, #4 of A/C.
Wishing you all a nice Sunday evening,
Marsha -
Hello girls,
I just wanted to say a quick happy mothers day to all. I got breakfast in bed. Woohoo.
The rads subject, if it helps for info purpose, I am grade 3, tumor was 3 cm, one node effected and I am stage 3A. So not sure if it has something to do with the aggressiveness.
My SEs seem to be gone for now, yay, except for the tiredness and the weepiness. I know what your talking about, this tx made me feel depressed daily and I feel like I am on the verge of tears all the time. I feel like either I want to bit someones head off or cry. And seem to have done alot of both.
Hang in there everyone.
Dawn -
I forgot to sign up for the bar! I'll be having my first Taxol/Herceptin on Thursday (tx #5)! I'd like a slice of lime with that, please.
Thanks,
Miss S -
Happy Mother's Day to all! I got breakfast in bed too today. I still like it even though my "baby" is almost 13!
On the subject of rads, my onc didn't even give me a choice. My tumor was intermediate grade 2 and so my chemo was a recommended choice, but the lumpectomy/rad combo was just a given.
My onc has always presented us with statistics - what tx will increase your odds of being cancer free and alive in 10 years - and having just a lumpectomy with rads put me at 73%. Add in hormone therapy and add 9%. Add in chemo and add in 6% more. My decisions have always been about weighing the tx risk with the outcome benefit.
I don't know if others have had similar experiences, but I'm sure you have.
Enjoy your week - all of us in recovery mode - and blessings to those who are in treatment.
Christine -
Bar Reservations week of May 14 -18
Monday:
Tuesday: BetteE (#10), GrammyNancy (#4)
Wednesday: Angel (#4), LisaSDCA (#4), Marshabel (#4)
Thursday: Maxgirl (#2 Taxol), MissShapen (#5)
Friday: HollyHopes (#6)
Cocktails of choice to be served.... -
It seems that many are still suffering greatly with se's. I am praying for each and every one of you. I am fortunate, this is my good week. I have found that I am still having sinus headaches since tx#3 almost 2 weeks ago. Has anyone else found that some of the se's hang around longer as the tx's go on?
Lisa - No need to apologize, I would rather you question it if something doesn't sound right. One of the reasons I read the boards is so that I can see if what I am going through is similar to others! If it isn't, then I start to question it! -
Sign me up for taxol #2 on Thursday, May 17.
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pmarsh - I had a wierd 'sore throat' that started at the base of my tongue and went in a straight line down my throat. I also had sore glands on the outer part of my neck that traveled from my jaw down to my chest - matching up with the sore throat. I told my onc at my last tx and he felt around and said he didn't feel anything gland wise. I decided it must just be allergies - which I deal with every spring. Then a week later my throat was still sore, I was running a low grade fever and my sinuses had started producing some rather unsavory 'stuff'. I called my onc and he prescribe antibiotics - just in case. Well, my siuses didn't improve too much, but my sore throat went totally away! I guess the moral of this story is, talk to your onc. You may have a sinus infection!
Best wishes to all stepping up to the bar this week. Here's wishing you little to no SEs! Hugs, Jacque -
Jacque, I haven't had any "unsavory stuff" thank goodness. I have had the same headache I get when they infuse the cytoxin too quickly. But if it doesn't get better in another day or so, I am going to call the onc. I am just like everyone else, don't want to sound like a whiner. Is that a typical female response or what? lol
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Good luck to everyone at the bar this week.
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Updated Bar Reservations week of May 14 - 18
Tuesday: BetteE (#10), GrammyNancy (#4)
Wednesday: Angel (#4), LisaSDCA (#4), Marshabel (#4)
Thursday: Maxgirl (#2 Taxol), Jillrush (#2 Taxol), MissShapen (#5)
Friday: HollyHopes (#6)
Smooth sailing..... -
I need your prayers. When I had my mastectomy they did a SNB which was negative. Further studies found that I had 1mm in SNB and small traces in the fatty tissue. The surgeon said he thought we needed to go back and do a complete node removal but wanted me to start chemo sooner and they would monitor the lymph nodes and then look at them after chemo. I had a PET scan before starting chemo and one lymph node lighted up on the side of the mastectomy surgeon and onc said this could be just for the trauma of the surgery. I had another PET scan last week which I will get the results from today when I go in for chemo. For the past week Ive been having a little swelling in my hand and lower arm on that side. Last night I noticed a lump in my armpit above the mastectomy scar which corresponds to the node that lighted up on the PET scan. I am so frightened and really dont want to hear anymore bad news. Sometimes I just want to act like Scarlett OHara and think about it tomorrow.
Nancy -
I am having 12 TAXol then 4 FEC. I am having #10 today. I will be shouting very loudly Aug. 7. Chemo has been my worse fear, but I am getting it done one day at a time...sometimes 1 minute at a time.
Bettye -
Nancy, I have said a prayer for peace and health for you, and wisdom for your doctors. Please let us know what you find out. Hugs, Jacque
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Wow Nancy, this sounds so scary. I am definitly praying for you and please let us know as soon as you find out anything.
Miss S -
Nancy, I prayed for u today.
jacque -- i've had a similar sore throat -- have been drinking cold drinks because the coldness feels good.
jann - i feel the same way a lot of times.
ok, question of the day -- my fingernails have started hurting. do u think that means they're going to fall off? cuz that would SUCK. i don't mind being bald -- i expected that. but no fingernails? ew! -
Dear Nancy,
I'm echoing Jacque, praying for you to have peace and that your doctors will know exactly what will be best for you. I'm also praying that you will have complete peace over any decisions that have to be made, knowing that the Lord works ALL things together for good for those that love Him!
And we all know that the waiting is the hardest part.
Christine -
Hi all,
I skipped my Taxol last Thursday as I have been doing a birding trip to Cape May NJ every May for 12 years and wanted to feel my best. We had a great time. I was really tired on Sunday after coming home, but that's to be expected. Playwright - the skin on my fingers is peeling off too. I don't know what to make of it, and yes my fingernails hurt also.
Sign me up for Tx #3 Taxol & Herceptin for Thursday May 17th.
Praying for you all.
Take Care,
sybil -
Hi,
One lady that was at my Look Good program had nails that were kinda peeling back and she said it was from the Taxol. I had AC, so I didn't have that s/e. I hear you on the baldiness - I told my husband I thought I looked like Gollum. He said I was still cuter
Christine
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