Starting Chemo January 2015

SweetHope:

I am now 9 weeks PFC and I saw my MO before my Herceptin only infusion this morning. She said all the joint and body pain is from leftover chemo namely Taxotere. I agree morning tasks lead to a nap in the afternoon. This may be a dumb question but why can't you swim after rads ? I guess I didn't know better but in 2006 after LX with rads to left side I swam all summer. I was younger but I can't remember anyone telling me I couldn't.

PMR53

SweetHope, thank you for the encouragement. And you are right my mind is saying keep going you only have 3 more to go but my body is saying no, stop just let me be, leave me alone..... lol.

The sad thing is people that are not on this post board do not understand. I wonder if the MO doctors and nurses really understand. I mean they talk with the patients on a daily basis and they witness the side effects on a daily basis and they study the charts and scientific studies but do they really understand? SweetHope, enjoy painting that ya-ya chair.

I think I was also told not to swim during radiation because the clorine will dry out the skin more.

Has anyone heard from Brandi, cherylfg, Tennisfan, and anyone else I may be forgetting? I am sorry if I am forgetting anyone.

Have a good night ladies.

PMR53 - good luck with your surgery Friday! It will be great to get that over with, right? Sending happy birthday wishes to your daughter!!

Mommacat4 - I don't think the doctors or nurses understand. I'm sure they can empathize but you can't understand this unless you experience first hand, maybe?

I hope all those not posting are doing well!! Maybe it is treatment fatigue?? I feel like that right now. I have 8 rads left to do which is great but I am tired of heading out every day. I would rather focus on getting better instead of getting worse for now. Radiation is going well but I started to get a bit red and sore this weekend. I know ii gets worse up to 2 weeks after TX is done so it is sort of looming over me I feel. I also am still struggling with aches/pains from Taxotere. I hear some people call it an easy chemo but it sure beat the crap out of me! I have big knots in the muscles of my lower and upper legs that I think happened because I was walking so bad for a couple of months. I have a big styrofoam roll that I use to basically roll out my lumps....sounds funny but boy does it work.

On a positive note, I am enjoying my puppy company! She has her moments but is mostly a very good dog. Actually heading out now to take her to the vet. We will see how much she enjoys my company for the rest of the day!

Wishing everyone a good day!

Wendy

Bonsoir lovely ladies and sorry for being MIA for such a long time!

It all started with a great friend of mine coming to visit for the weekend. Then the weather turned so fabulous that I felt more alive than ever. One night, dressed like in the middle of summer, I got rained on, with cold, icy rain from a huge rain curtain. This is also the weekend I had decided that it was too hot for wearing a mask in the subway. Well... I caught the cold of the century. A man's cold lol. The kind that feels like razorblades in the throat :0( I walked into work last Monday, and decided to leave by noon - now that would be a first for me!!!

So I spent last week on my couch, and lost sleep over the fact that I was scared to be told to postpone my Taxol on friday. By I am not sure what kind of miracle they said I was still ok so it all went up from there :0))). I was of course also upset about missing tennis, and my mood is never the best when I miss tennis lol...

Like some of you I have also managed to get my steroids down by half - even with a sleeping pill, I was going to bed at 4 am every friday night, i.e., saturday morning... I am now working on getting the Benadryl cut in half or removed entirely but they won't budge.

In a way the Benadryl is a blessing because I always go to the hospital for the earliest treatment space available, 8 am so they are on time for sure by then. Since I am not a morning person I am happy to catch up on sleep a little. I have had to resort to a trick since I started Taxol because a super nice, old gentleman, Eddie, who is a volunteer, loves to come and cheer me up... typically when I start feeling like sleeping a bit and not in any particular need of a cheer. So now I get there, pull the blanket over my head and just sleep during the 2.5 hours of treatment. I make sure to say goodbye to Eddie before I leave, it makes him happy and he is very sweet lol. Am I mean or what ?!?!?

For the AC part I had convinced myself to take sleeping pills (zopiclone, helps you fall asleep and not addictive says my doctor) only during worknights. I sort of fought my way through weekends but now that the Taxol infusions are weekly, I just gave up and decided to go with the flow and take them pills until I am done - this week is actually Taxol week 6 - so 6 more to go.

Also had my rads consultation last week and came out very encouraged, while I went in with a bit of fear about long term effects. So as with AC & T, I can't wait to start, to be finished finally!!!

I too have white peach fuzz growing back (well by now it's long peach fuzz). I followed Beachbum's advice and am taking Biotin daily, in addition to L-Glutamine, B1, B6 and B12 (thank you Kristin, no neuropathy so far, except in my lower back, following the first Taxol).

I am not exactly pleased with the white, and people are quite surprised as I never died my hair before. I had a bit of salt in the pepper but nothing I wasn't proud of lol. Now taking a page from Wendy's book I also threw my wig out of the window, after sweating through a 30 Celsius weekend. Funnily enough I have never had so many compliments about my head than when I decided to show up bald in the office. I was already doing it during weekends and met one of my employees on the street, going to a charity fundraiser the other night. So it broke the ice nicely...

Bon, so thank you to the ladies for your concern, but I promise that all in all I am really doing well. I totally hear you when you say that this is getting s little long... And at the same time weeks are going by so fast I am scared to be gone through summer just counting down Taxol and rads weeks SIGH

I have decided to opt for dragging myself to rads every morning at 7, in the hope that I can still work through it. I have plenty of time to think it thru as I am stating only in August... Maybe I'll change my mind by then and will want to leave work early to go to the appointments... But I hate the wait so I'd rather go first thing in the morning and not wait, I think.

Finally I have now tried to fix my email alert several times but although it says it is on, I am not getting your posts thru email as they are published. So I missed a lot on things to congratulate you with, but certainly remember to congratulate Beachbum for being done with rads and a treatment-free summer!!! And Cat's daughter's graduation, and Jenn still dancing, and Wendy being halfway done rads!!!

Sorry for the mini-novel and have a good night, lovely BC sisters!

Marjo(rie) aka Tennisfan

Tennisfan, I am so sorry that tennis is waiting on you for now, but so happy that you are getting rest on the couch. Colds can linger a long time, and you need all the rest you can get to get well. Take the meds, and sleep, coming back from all this is a slow go for a reason. You need to repair and gain strength. For me rads produced a large amount of fatigue, but I am feeling great right now. But the feeling of having all that in the rear view mirror has changed my outlook, see the possible! I had 33 rads, and felt like it would never end, it did and I never felt so good to walk out the door! But you still need to rest, I finished 8 weeks ago. I am so happy that your chemo portion will soon be over.

But I am now done, all of my scans are great, and I am now a member of the LiveStrong Y program. And tonight I am going to a Ladies Night Out sponsored by the Cleveland Clinic. I will be joining my beloved friends that I met at rads. For all of us here, or friends we met during treatment, something wonderful does happen, we meet the best women in the world, and you are one of them! And I will be waiting to join all of you at the rads finish line!

Hi everyone... just checking in real fast before I collapse. I had my surgery last Wednesday. Something went wrong though I'm not totally sure what. I lost a lot of blood. I know that. My blood pressure was horribly low for several days. I'm in a lot of pain. I have to walk around hunched over and it kills my back. When I'm not in pain I feel nauseous.... like way more than when I was on chemo. I spend hours upon hours feeling pain and nausea. I also feel like I am wearing a corset 2 sizes too small so it makes it hard to breathe. I have been getting panic attacks and crying a lot. Mostly I cry because I'm sick and tired of feeling tortured. I'm tired of pain. Tired of nausea. Tired of going through crap month after month after month. Just tired. They took out 12 lymph nodes and found 3 with cancer. They made one of my boobs bigger in anticipation of me getting radiation even though I told them I didn't want to do it. I'm depressed, frustrated, tired in my soul and just want to scream but don't even have the energy to do that so I'm just going to start crying again as I right this. Just so you all know I'm still alive (yay.).

Oh, Brandi, I just saw your post. I'm so sorry and my heart goes out to you. Your feeling that it's hard to breathe doesn't sound fun. I do hope you'll call the surgeon's office about this.

XO. MM

MM, I adore the tennis ball reference. That is a great description of what my head feels like. My hair is coming in white with a reverse skunk affect...a dark streak down the center.

I too loved taking care of my parents in their final years. They spoiled me terribly, so I did my best to spoil them back. I know they would be very encouraging and supportive as they were very strong willed, can-do-anything types. But I think this would have broken their hearts, as cancer doesn't run in our family, and I am the first.

Brandi

I sent you a private message. Hang in there. Hoping and praying you start to feel better. Nausea is the worst!

Patty

PMR53, I hope your surgery is smooth sailing with great results. And I hope you get a summer pass too! Cheryl

PMR good luck tomorrow (today)!

Brandi- I'm sorry your entire cancer experience has been a shitbag from the start. Cancer is never good, . But you seem to get the raw end of the stick at every turn. I'm sorry for that- truly not fair.I hope these symptoms are addressed and alleviated soon, and that your BS is listening and being helpful. I'm sure you have already been on the phone advocating for yourself.

I'm sorry the PS violated your wishes.I'm curious as to why they did an immediate diep flap if they knew you will need rads? All of my ps consults have advised to do reconstruction after rads.

The force is strong with "incorrect" AKA autoscrewup on my Kindle. Grr.

I had taxol 8 yesterday. I have actually come to look forward to chemo days - I know, screwed up. It means I'm getting one step closer to finish this chemo shit. I have different friend taking me every week so it is like a lunch date where is I sit in a recliner with a blanket and my lunch is pretzels and poison with benedryl and decadron mixed in As appetizers.

I go see the ps consult today regarding DIEP Flap. I plan to solidify my flap decision after this appointment and start getting things lined for surgery.this to me feels I'm about to emerge from a long winter and surgery is summer. It's helping Mr get through these last weeks.

thank you Momna, J Stacy and Beacbum! For the support and well wishes. Just about to shower and go!! Hoping all goes well and I am home in my own bed tonight!

PMR53

Marjorie, The men will be lining up to have a chance to date you. You have been such a positive force during all this, that any man would be a fool not to appreciate your spunk and determination.

PMR, I hope you are resting comfortably at home tonight.

Jlstacey, what a yummy lunch!

OH Brandi – I didn't have reconstruction so I can't imagine the pain you are experiencing but I so wish it could be taken away.I hope you have called your BS by now and have gotten some relief! This may not be what you want to hear as I know you are tired and frustrated with treatment but the radiation is nothing like chemo.I am almost through it and it has gone very well. I realize that I still have one more week of rads and then at least another 2 weeks after that until the redness peaks but this is so much more manageable then chemo was. Once your pain and nausea from surgery is under control, maybe radiation won't seem so unbearable.

PMR53 – Happy to see you are home from surgery and able to post. Do rest and take it easy. Wishing the best for the path results next week too!

Marjorie – ditto what Sweethope said!The main problem I'm sure is finding a good candidate!! LOL

Jlstacey – I can so relate to what you said about being happy to have another chemo! I feel exactly the same way each time I get another treatment of radiation too. Hope your consult went very well today too.

Both of my parents are still here and doing relatively well. My Dad started radiation yesterday (first of 40) for prostate cancer.His appointment was at 11:15 and mine was at 11:00 on a different machine. We went together! My Mom had oral cancer 3 years ago and can now only eat pureed foods now as they took about 7/8 of her tongue to rid her of the cancer.She is otherwise doing okay though.They only live about 20 minutes away from me and have been a great help to me as I try to be to them. I think it is important to keep those family connections whenever you can. It's great that many of you were able to do that as well.

On the hair note, I actually think I am still losing some of the hair that didn't lose through chemo. Grgh!!! Eyelashes and eyebrows are now completely gone too. Honestly, I would like them to come back sooner than my hair because I think they make me look sick without them! With all my hot flashes, no hair on my head has been a bit of a blessing! I did get some hair growth though as I had to shave my left underarm last week for the first time..Oh yeah for me! LOL With radiation, no growth on my right side now it seems! Oh some kind of luck eh? Ha ha ha...

I will add a couple of pictures of my husband and the puppy Bailey! Both of them are always hungry so one is of them looking in the fridge and the other is them looking at the grocery flyers! Hope they bring a smile to you all!

Wishing everyone a great weekend!