Starting Chemo January 2015

LCH033- you should not be getting Neulasta after Taxol based on what I've been told. There needs to be two weeks between infusions to get the neulasta. I don't know what this means for our immunity. I'll ask tomorrow. Could your headache be from dehydration?

Beach bum- does it hurt when your nails come off? Is there any pain involved in all this Taxol nail stuff?

Funny story (I think at least)- my son U.S. special needs and is in a special education classroom. His teachers are aware I have cancer and I've asked them to keep an eye on him for any signs of anxiety. He hasn't been too concerned about it all really. His teacher told me that they were reading a book with a bald man in it and were discussing why some people are bald. Liam immediately said, "My mom's bald!" He then proceeded to tell his bewildered classmates in a matter of fact voice, "You're not allowed to laugh at her!" He was simply repeating what I said to my family - not to make any jokes until I'm comfortable with having lost my hair.

Next time I'll tell you all what my dad did when he shaved my head. It's a good thing I have a good sense of humor

LCH, I was told no Neulasta shots with Taxol. There are 2 ways, that I have researched, that Taxol is given. "Dense Dose" I believe is the every 2 weeks one. They give a stronger dose every 2 weeks or a lesser dose every week.

Tonight I made my alcohol/water "gel" packs for my nails. Hopefully they will work out for my first Taxol treatment in the morning. I am already stressed out about it, especially the steroid. One thing I'm wondering about is if constipation is still a big issue with Taxol like it was with the A/C. I haven't seen any complaints about that. Mostly I have seen complaints about the steroid. I think I may beg them to start me off with a half dose instead of a full one. I doubt they will agree to it though.

Sweethope, I'm sorry you got that news. I hope for the best for you and am sending good vibes.

Brandi and Beachbum, is the steroid dose on Taxol bigger than that on AC?

Ladies, who has finished AC? I'm going to start a list. Also, how many are doing this as neoadjuvant chemo?

Tennisfan, thank you. I am going to ask my oncologist about what is going to happen after chemotherapy. I am taking a note pad and pen or my husband with me so that I will have a memory of the conversation.

Loriekg, my son is 9 years old. I expect Monday and some or most of Tuesday will be fine. By Wednesday, it will be awful for the next several days. The sad part is we will be confined to our home since I will be immuno-compromised. I am excited that I only have three more chemo infusions. After Monday, I will only have two more. I go Friday for my blood work. I am counting that down too. Do you have any plans for you and your family over Spring Break? How are your chemo weeks? How many more do you have left?

LCH033, I figured the port would stay in for the full course of herceptin after I read some other discussion boards. If I haven't made it clear I really don't like the port. It is better than receiving the AC through a vein but I don't like the port. I am sorry that you get so dehydrated you have to have fluids. I have 5 shots T, W, Th, Fr, and Monday after my chemo infusions. The drive to the oncologist's office for the shots is terrible too. There isn't an appointment for them so you so just walk in wait for the nurse to call your name. Sometimes it goes quickly sometimes it doesn't. Do they give you fluids through your port?

Lorie; glad I reminded you about the Calritin! Lol I hate I forgot it as I am paying for it now! I take Tramadol with a Valium and fall in love with my heating pad. Haha

Beachbum; they haven't really talked to me at all about the Taxol except for "Taxol's nothing compared to AC"; my Mom is making fleece covered cold packs for my toes and fingers to hopefully help. So far my insurance hasn't really bawked at anything except the initial double mastectomy and lat flap with reconstruction; they charged my insurance a total of $118,000.00 and BCBS mailed them saying they would pay all of $17,000.00; Lol; kinda blew my mind!! I guess they can fight that out.

As for the Neulasta shot; I get 1 after each AC so a total of 3 at this point and I haven't even seen the charges yet. Will I get shots during the Taxol too??

So many drugs; so many different Doctors and Nurses; so many appointments; I can hardly keep up with it all. I have Aflac and feel I should be a spokes person as they have saved my butt financially!!

I am thinking about getting into yoga to try and calm my brain and do some kind of exercise; I'm ready for the weather to get nice so I can start going on walks or even a bike ride....my goal is to be able to work with and ride my horses again!!

Oh, and does the Fight Like a Girl shop have a website? Thank you for letting me know about it.

Hope you ladies have a good week!

Fight Like a Girl, Never Give Up!!!

Lara

Hello again,

I was wondering if any of you have issues with your wigs? Mine itch my head lime crazy and by the time I got home from dinnerwith DH and took my wig off my head was super red and hurting in many spots from my wig. I did keep adjusting my wig all night because it was bothering me. Normally I just wear a cap and not my wigs. It was suggested that I wear a nylon cap under my wigs but that nylon cap just keeps rolling up my head just the way knee highs roll down my leg.

If anyone has suggestions please let me know. Thank you.

mammacat; first, congrats on being done with AC!! I have 1 more on the 19th then I am assuming a 3 week break before Taxol?...Sounds like our schedules are very similar as I have 12 treatments of Taxol then 5 weeks of Rads which puts me in July to August....in Texas....I feel your pain; not the best time of year here either to get zapped daily with radiation to say the least! I am also nervous about the Taxol as I start Herceptin at the same time and they keep saying no nausea however it's a side effect listed?? I'm confused; which is easy to do these days with my wonderful chemo brain. Lol

And...Happy Anniversary!! I am so glad you felt good enough to get out and have some "normalcy" with DH; good for you!! I have a wig and I have never put it on for more than a minute; to me it looks funny and it's annoying;and I had really long hair before I did staged hair cuts until it started falling out and I had my Ben buzz it off along with his. I go bald or with a chemo beanie, turban, or scarf. However, at CureDiva.com they sell caps to go under wigs to prevent the scratching and irritation; I've bought all kinds of fun stuff off that site and so has my Mom as she shaved her head too.

I am still home today with allot of bone pain and fatigue; the Direct TV guy came out to replace Ben's DVR receiver and he wanted to talk...and talk....and talk....I wasn't rude but I had zero enthusiasm! Lol

I am determined to go to the office Thursday and at least get a few days in the office with my work family before AC 4 next week!

Mammacat, Good luck tomorrow; I will be curious and anxious to hear how it goes and wishing you only the best!! You'll be in my thoughts and prayers!

Fight Like a Girl, Never Give Up!!!

Lara

Hi ladies,

This is bit of a random question...did you have a PET scan (or other tests) prior to chemo to determine if your cancer had spread or not.

The only tests I had was my ultrasound and MRI at diagnosis, my BMX, and the started chemo. As I am nearing my last chemo treatment next week I am starting to panic that enough tests weren't run to adequately rule out mestatis.

At my last appt with my MO I asked how she could be sure the cancer hasn't spread but she said based on the tumor size and the fact that my sentinal lymph nodes came back with no cancer that was enough. I've seen many diagnosis on this website that say 0/5 (for example) lymph node involvement but the are stage IV; am I being paranoid?!?

Any and all advice is welcome.

Thanks!

Teri

Dear Teri, the way I understand it is that I only got a PET scan because I have one lymph node attacked out of seven removed and clear but close margins. If I had zero and truly clear margins then I think they would have not done the scan to see if cancer spread thru my lymphatic system. Now, if they refuse to scan you, an onco nurse had suggested to me that I go to a private clinic for a bone scan, once all done, for better peace of mind. She said I think it's about $500 in Mtl (I could be wrong on that).

Mommacat - you got me almost crying earlier today - good on you! Did you tell us how was the All state choir experience? Sorry I can't be of help - my wig is not itchy to my great surprise. I am wondering if you are not allergic to some component?

Jenn and Kristin, I am worried now but understand if you cannot connect. Just hope you ar both ok!

On the topic of Taxol not a walk in the park but I am told less nausea for sure. I am just hoping Herceptin in the mix won't cause too much additional grief to my already sensitive digestive track :0(

Bonne nuit,

Marjo

Mommacat- my head does itch some with my wig on. I don't wear it much because it is somewhat uncomfortable. In fact, I sort of feel like I wasted money buying it. It moves around on my head and I feel like I have to adjust it a lot. Does anybody else feel the same way? I prefer a hat that my girlfriend gave me. I think I will switch to scarves in the summer though.  Good luck on your first Taxol infusion today. I'm a little nervous about Taxol too, but I will be so glad to have AC done. I have my last AC tomorrow.  I'm dreading it.  My MO lowered the dose by 10% due to weight loss (11 pounds) and how difficult the last round was for me. He gave me a nausea patch to put on today which I can leave on for a week. You waited three weeks in between AC and Taxol, right?  Did the MO decide that or you?  Did you get your taste buds back at the end of the three weeks? I miss mine so much. I can choose whether to wait two or three weeks in between AC and T, and I'm thinking of waiting three if it means I have a couple days when I can taste things. FInally, I'm glad you had a good anniversary!

TeriMP- I did not have a PET scan. When I asked my MO the same question you did, he said they used to do scans on everyone and have found that they generally were radiating people unnecessarily. He said that my cancer has not metastasized based on my bloodwork on lack of symptoms. I sort of wish they would have just done a scan though. There is always that niggling worry in the back of my head.

I'm feeling pretty back to normal today, finally. I had fast food yesterday- big mistake. Oh, the nausea afterward! I'm sticking mainly to fruit and nuts so far today. My MO told me that the nurses say that round 3 of AC is generally the hardest, so that makes me feel a little better about tomorrow.

Is anybody else sequestering themselves at home? I've had two colds back to back for the last month. Norovirus was going around my daughter's school last Friday. She missed school that day because of appointments, but kids were puking in the hall.  It's better now. I've just decided to avoid going out in public as much as possible until cold/flu season is over. I have a friend doing my grocery shopping for me today, and I'm going to look at Amazon for other stuff.

Have a good day everyone! It's sunny in Michigan and it's going to be over 50 degrees!

HI all,

Jenn, reporting to base after AC#3. Slowly crawling out of my hole. Nausea is requiring more effort to manage this time, but I got two days of 'steroid high' after my treatment and even got in a pile of dance unexpectedly! Now I just want to sit on the couch, so I am going to do so and watch dance competitions lol.

Hoping for a better go this time, I never recovered from the fatigue last time, although it appears on top of recovering from the chemo I was also recovering from the port placement and having PMS. Never a dull moment in chemotown lol. So far this round seems to be better. I am sleeping better, but my docs also gave me new tools for managing insomnia which will hopefully let me get ahead of the fatigue and have at least a few normal-like days. My cravings continue--goat cheese and mushrooms again lol. I dreamed another cheesy mushroom casserole

I have one more round of AC on Mar 27th, then 12 rounds of Taxol starting April 17th. The weekly treatments worry me a little because it seems like a lot of concentrated effort to get done, either recovering or preparing for next round. I am trying to get 'ahead' with things accepting I just won't have time or energy for anything once taxol starts. After Taxol, I also have 6 weeks of rads, followed by a dx mx with reconstruction this fall.

Sweethope--I am so sorry to hear about your test results. I hope you work out something that keeps you fighting AND healthy

Beachbum--Good luck with your echo and congrats on finishing your rads. I hope there isn't too much more treatment in your future

Teri--I didn't have a CT or PET scan until after the tumour was found in my lymph node and my margins from my px mx were found to be less than .5 mm. I had the PET scan only because the CT scan showed and area 'of concern' around my knee they wanted to look at further to rule out a tumour. The PET scan showed it to be a benign overgrowth of cartilige, nothing to worry about. Everything seemed to follow the pattern of if 'A' = 'X', then test 'C' is needed. I had a lymph node tumour, so a CT scan was needed. That said, I don't think you should ever worry about discussing your concerns with your doctor--you should discuss them and get some peace of mind--you deserve it!

For all the ladies who have finished AC--congrats and sending you strong vibes and strength for taxol!

Jenn

hi all! So sorry I haven't been in touch, I will confess AC 3 was really hard. The nausea lasted over a week and it was so unpleasant and discouraging. I still worked, which prob was not the smartest thing I have ever done, but so be it. Today I had AC number four and I am in bed with anticipatory anxiety. I am watching a really good documentary and waiting for my husband to bring me home a pizza. I am usually a nutrition nazi so this is unusual, but it have a craving. Marjo, thank you so much for checking on me. I have been reading all of your posts and thinking of you all and sending my best. Love to you all. Will write more later.

Love

Kristin

I haven't posted since January, but I've been reading many of the posts and feel like I know all of you. I've learned so much from all of you. Thank you.

BeachBum and SweetHope, I've continued to have shortness of breath and it got so bad that I couldn't stand up and fold laundry yesterday. Couldn't even sit and fold laundry. I saw my primary care doc today. Chest X-ray, labs and EKG were all clear, so I'm scheduled for an echocardiogram tomorrow. I, too, have thoughts of trying to finish chemo if I can, not doing rads, and getting a BMX. I will wait for the echo results. And I see my surgeon Friday, who will probably say the same thing as before. ...... The John Wayne institute study shows no difference in outcomes between lumpectomy and radiation vs mastectomy for stage 1 and 2 BC. But, we aren't statistics, we are individuals, right?

Frustrated, scared, and desperate for spring,

MM

Hello everyone,

Beachbum, thank you for your advise on the wig but the nylon cap just rolls up my head. I think I have a round head. Lol I am sorry to hear about more Chemo for you.

LCH033, I was on a 2 week regime on AC so there were only 2 weeks between AC and T for me. Today was my first Taxol treatment and it went ok. I did get a little nauseous during treatment but it was ok. So far I haven't noticed any other side effects but one of the pre meds they gave me was a steroid so that might be hiding some se's.

My 4th round of AC was brutal for me with bone pain and fatigue but I did start feeling better on Sunday and Monday. Then I had Taxol today. Go figure.

I hope the cold packs work for you. I personally did not use them today because I was already freezing during treatment. They brought me a warm blanket. My hands were like ice.

Teri, I have had mammograms, ultrasounds, MRI, echoes, and a bone scan. My oncologist ordered a PET scan but the insurance denied it. I am so had a bmx With reconstruction start. I am going to ask my onc for a pet scan. I know that if the cancer goes Mets and there are cancer cells in your blood the steroids may mask them so they don't show up in blood tests. I found this out in 2010 when my mother in law was diagnosed with thyroid cancer. Every time they took blood tests they told her she was fine. By the time the doctors actually listened to her and did a chest x-ray and CT scan she was stage IV Mets with Hodgkins lymphoma. They gave her 30 days to live. Told her she wouldn't last past September. She struggled with us till November 10th. God rest her soul. I loved that woman. Of course her husband was broken hearted and also not in the best of health, he gave up and we buried him on top of her a month later. He passed away on December 9th, 2010. Bless him too, loved him with all my heart.

Tennisfan, the All-state choir was wonderful. I love listening to Orchestra and choir. The children played wonderful and sang so beautiful. They wouldn't let us record it because of copyright laws but it was still amazing. And the drive only took me 2 hours not 3 each way. Even though I had to drive by myself I think it was very enlightening as I spent that personal time talking, praying, yelling and crying at God. After my enchanting moments with God I feel I am a changed woman in many ways and I am no longer mad that I have cancer. I know I have been given this challenge for a reason. It's up to me now to fight and do something great with it.

BKCA, I have always wanted to try yoga. Maybe now is a good time to start.

Jlstacey, good luck with your treatment tomorrow. I only had 2 weeks between AC and T. For the most part everything still tastes horrible but I was able to taste a little bit of my prime rib. It was good. I had a sweet potato baked also but couldn't really taste it. Let us know how you do with your last AC tomorrow. Today went ok with Taxol except I was freezing and I had a little nausea.

Jenn, thank you for checking in, we missed you. I hope for a better recovery for you this time and it should be outlawed that we have PMS while going through chemo.

Kristen, good to hear from you too. Take it easy and rest as much as you can. #4 AC was rough for me to. Drink lots of water.

JazzercizeGirl, regardless of the statistics you need to look at what's best for you. The statistics are only there to provide information to help you make the right decisions for you. Don't be afraid to ask what if questions to your doctors. It doesn't matter what stage you have. That fact still remains that you have cancer and it needs to be treated to best help you. Everyone is different and everyone choses surgery, chemo and radiation for different reasons. These are difficult decisions but your doctor can't make them for you all they can do is give you information so help you make an informed decision.

SweetHope, congrats on the cat scan. It sounds weird to hear you say you miss chemo but with everything you have been through we all understand why you say this. What is a Muga and EF%? I haven't heard those terms before.

I have out winded myself. I am exhausted from tying. Have a good night ladies.

Ps... cherylfg, how are you doing?

Oh Wendy, you were next on my list - I am so sorry that you are experiencing Taxol like this. No SEs they said - well thanks to you my onco team will have a full list of questions about that before we start anything.

I just want to encourage everyone by reminding ourselves that two months and a half ago we were scared to death and, thought we might not be able to go through AC the red devil and now we are almost all done ( Sweethope you'll catch up no worries. I had to do a Muga too).

So now we collectively have to pull through and we will.

I feel it went fast, in a way, going from one bout of big C and cramping and nausea to starting to heal to going back at it but the point is are we able to get through 3 more months and judging from recent posts from a lot of you I think we can.

Wendy, you have been my optimistic positive buddy since say one so I am here for you.

Teri there are great clinics in Toronto and Calgary if you need the peace of mind but first discuss more with your onco - you go Girl!

Mommacat, I remember your first posts. You are a different woman and we need to follow your example, with or without God...

OK - going to fight some fires at work - not a pleasant day ahead. Will keep you all (and hello newbies) in my heart today.

Remember to not stay alone and recluse if your neutrophiles are high. Choose something less risky like a walk in the park, wear a mask if you have to (I wear one everyday but around people only - you likely won't catch anything nasty from a bit of fresh air). And my hands hurt from compulsive washing but so far so good as typically I catch EVERYTHING.

For those of us up north - keep the scarf, mitts and hats until April just like my mommy used to tell me lol. With the past two days weather (6 degrees above zero) it was so tempting to go crazy but resisted the urge to switch to a trench coat. There is almost no snow left on the ground in downtown Montreal!

Marjorie aka Tennisfan