Starting Chemo May 2008

KristyAnn · April 2008

KristyAnn · April 2008

Anyone else starting chemo in May 08?

I was diagnosed 3/18/08, mastectomy 3/27/08, axillary dissection coming up 4/22/08 and then should be on chemo early May 08. I am er- pr- and her2+.

My name is Kristy and I am from East Texas. I am married and have 5 kids ranging from 7-21 years of age.

I would like to find or start a group who will be starting chemo in May 08 so we can all hang together and support one another. If there is a group already started (I tried to find one) please let me know and I will move over there.

Kristy

otter · April 2008

Hi, Kristy, I remember you. I'm not starting chemo in May, but I'll be continuing it through May and into June. I'm getting 4 cycles of Taxotere/Cytoxan, given at 3-wk intervals. I started April 3, so my 3rd tx will be in mid-May (assuming all goes well with #2 next week).

I don't think there is another group for May, so I'll try to help you keep this one active (and on the 1st page of the Chemo board). I normally hang out in the "starting chemo in April" section, as well as in the one on "Taxotere & Cytoxan."

Welcome!

otter

robink · April 2008

Hi Kristy,

Looks like I'll be in the May group. Like Otter I'll be getting 4 cycles Taxotere/Cytoxan every 3 weeks. Next two weeks for me include further recovery from left mastectomy (4/7/08), chemo teaching, baseline labs, preparing myself physically, emotionally, spiritually for what these next months hold for me. Also want to get the house cleaned to my statisfaction and pay someone to come clean the many windows in our house.

It's too bad we met this way but it is good to have someone who know 1st hand what I will be going through.

Robin K.

KristyAnn · April 2008

Hi Robin and welcome,

I thought my chemo was going to start in April and I have been trying to prepare- I did find a housecleaning service and they are coming weekly to do the 3 bathrooms, living room and kitchen floors and dusting and vacuuming in my room. The kids rooms are too messy so Im not sending them in there. I am having a second surgery next week which is what delayed my chemo into May.

I have bought a few hats and scarves trying to be prepared - I am thinking right now I dont want to do wigs in the hot Texas summer but who knows.

I think my therapy is going to be TCH- TC every 3 weeks X 6 with Herceptin on the in between weeks - but that may change too at this point. Axillary node dissection is on Tuesday next week and results from that may also change the current treatment plan - seems like every day feels like a roller coaster!

Have a great week and welcome - lets try to stay in touch and help each other through this!

Thanks for stopping by Otter- I thought I was going to be in the April group with you but I hit (another) bump in the road!

Kristy

angelsaboveus · April 2008

Hi Kristy,

Looks like I will be joining you in May for chemo, I had my mastectomy and axillary node dissection on April 2 recovering from that nicely and just found out yesterday my appointment with the oncologist is on the 25 of this month to discuss what chemo treatment i will be getting. So that will put me into May I'm sure unless he wants to start the following week ! I have been fine up to now, just that phone call yesterday brought it all back again and made me uneasy.

KristyAnn · April 2008

Hi Angels,

How is your recovery from the axillary dissection? I have to go back in and have that on Tuesday. DO you have any helpful tips or precautions?

Kristy

laureg · April 2008

Hi Kristy,

I had my AND in December.I opted to go home right after. The drain stayed in for 2 weeks.Towards the end I had to change dressings twice a day because the fluid wasn't draining in the drain bulb anymore. I had no problems with seroma build-up. i faithfully started walking my fingers up the wall to improve mobility. Finding a comfortable sleeping position wasn't easy, use plenty of pillows. Also after a few days I put a sports bra on because the slight pressure gave support. Plan to wear tops with buttons and get help with dressing, bathing. Baby powder around the dressing helped minimize odor until I could wash the area. A lot of people report burning and numbness under the armpit and outer upper arm. It has to do with the intercosto-brachial nerve being cut to have better access to nodes. It will take time to get used to this feeling. It may improve and it may be permanent. It does not affect mobility, just something to learn to live with.

I hope this helps. Good luck!

angelsaboveus · April 2008

Hi Kristy,

This is so weird....3 months ago I had never heard of an AND and now I'm explaining how mine went. Boy our lives sure can change in such a short time!!

Here it goes... first off my experience might be a little different than yours will be as they did the AND at the same time as my mastectomy so it was accessed through that incision and not with a seperate one. Was there a reason they didn't do yours at the same time, did you have a single mastectomy?

I woke up from surgery in recovery and had slight achiness in my arm so they gave me a percocet, and that was the last perscription pain pill I had.

I stayed overnight in hospital, they put me on anti inflammatory for swelling and gave me a rx for tylenol 3. Before I left the physio came by a gave me some gentle excercises to do for my arm until i got my 2 drains out. You will probablly only have one, i had the extra cause of the mastectomy. My surgeon also told me to use that arm and let my body tell me when to stop.

I slept in a recliner for pretty much a week and a half, as it was most comfortable and so much easier to get out of, I was worried about pulling something trying to get up out of bed. I had numbness also under upper arm, armpit and front and back of shoulder area. The numbness is fading under the upper arm and noticing it is quite sensitive to clothing and things rubbing up against it, but it is still quite numb under the armpit. For this reason I have been leary about shaving under that arm so today i am going to pick up an electric shaver so i dont cut myself. (just somethng to think about) So loose fitting clothing thats not to tight in that area is better and as laureg said button up shirts are great.

I got my drains out 6 days after surgery as my output was below 30CC the whole time. And was able to drive the next day. My range of motion is not to limited side to side it's more the up and down where i can't get my elbow to far above the shoulder. I have been trying to put on some of my t-shirts and find I get kinda stuck half way through cause I can't move the right way to get it on. It's actually kinda funny thinking I might have to walk around the house this way util someone gets home to help me out of this position!

I started physio 2 weeks after surgery to help with this. It feels so good to get this as they gently massage the muscles and joints and then at the end she puts some nice heat on and I'm ready for a nap! So I guess the most important thing is to keep up with the excercises they give you.

I have a small bit of swelling from the surgery but they say it's normal, and no fluid buildup as of yet.

So for you with already having had a mastectomy , this should be a piece of cake ! Let me know how it goes for you and sorry if I rambled on to much.

angelsaboveus · April 2008

Hi Robin K, It's nice to know we will have each other to lean on and share with in the months to come !

Don't wear yourself out with too much housework, but I know it can give you a feeling of peace when you know everything is in order, I too have been looking around surverying what needs to be done. Well.. I can count the garden out as it is snowing here today ! ( Yah snowing, what happened to Spring!!) I guess it's inside work.

When do you start your treatment Robin?

robink · April 2008

Angels,

All things are pointing to the start of T/C (4 cycles every 21 days) in early May. Next week I have a 1 1/2 hours chemo teaching session and base line labs, also will meet with someone about complementary therapys. Then Tueday the 29th a final meeting with the onc or his NP to be sure we understand everything before my 1st treatment. So that puts me into the 1st week of May.

Will you be working during your chemo? It had been my desire to work part time after sessions 2,3,4 but don't know if that will be possible. I am a nurse at a very busy clinic that deals with a lot of sick people. Since I've been out on FMLA the clinic has been "restructured" and our call center eliminated. With the call center gone, there goes my opportunity to distance myself from patients who could jepordize my health. Therefore an extended medical leave is most likely my next best option to cover my position after FMLA expires.

angelsaboveus · April 2008

robin,

I wish i knew what course of action i was taking but won't know that until next Friday, I just want to get on with this!

I am very fortunate that we own our buisiness and I am able to chose to not go back to work during chemo

Sounds like you have a very busy job and maybe the time away from that might be a healthy option for you if you can swing it !

Do you have family at home to support you? Any kids?

I have two boys 19 & 21 who are 8 hours away and our daughter 12 is at home, plus I have a wonderful husband who is very handy in the kitchen. He has already stepped up to the tasks at hand, little does he know how long he might be on the job !

Have a good weekend , keep in touch

robink · April 2008

Angels,

We two "kids" son 21, daughter 18. He works full time, she's trying to figure out what to do with her life. Just returned from 7 months away (germany then africa with an organization called YWAM). My husband has been very supportive from the start and I appreciate him so much! He works 3 days a week which gives him an opportunity to think of something besides my cancer, surgeries, recoveries and up coming chemo.

With short term disability available to me, financially we'll be OK with me not working. It's my emotional well being that is of concern to me but I certainly don't want to put anyone I take care of put at risk because of "chemo brain".

Well, I'm going to take a walk! It's breezy here today, but warmer and sunny. Enjoy your Sunday.

beachmom13 · April 2008

Hi Kristy, like Otter and some of the others, I'll start in April (4/23), and will continue through June, then on to rad.

I had AND at the same time as my lumpectomy and went home that afternoon. It was more of an annoyance than anything else. I had the drain in for 1 week. I didn't need any pain meds, but did use them as a precaution when I had the bone scan done 4 days later, and when I went to my mom's for her birthday the day after surgery. As others have said, there is numbness and sometimes a prickly feeling, like your arm/back/side has been asleep and is coming out of it. I found that if I rubbed the area gently, it went away, at least for a little bit.

I felt like my armpit was stuck together. I used cornstarch and it felt better. It also felt like things were swollen, but they weren't

I wore a sports bra until the steristrips came off, then it rubbed the area and I bought some soft bras to use. I was told not to raise my arm above my head for 2 days and then to use it as much as felt comfortable. When I had the drains out 1 week that, they told me to use it as much as possible. I found that stretching in the shower with warm water running over my shoulder helped a lot. I started PT this past week (wish it had been sooner, but we had a trip planned), and she actually gave me the same stretching exercise and reccommended that it be done in the shower.

I slept in the recliner the first night, but found I was more comfortable sleeping in my bed, using lots of pillows for support.

I still have a bit of difficulty reaching behind me - some brain put the toilet paper roll there, but other than that I've pretty much been able to move my arm anyway I chose for the past 2 weeks.

Again, the only difficulty I feel is just being annoyed at the prickly feeling and numbness.

I was able to put on pull over shirts after the first week, but I used my dh's and they were really big.

Also, sorry for the ramble, but I know that you'll make out fine. Let us know how things go. Everyone is here for you.

KristyAnn · April 2008

Hi Everyone,

Robin - I live about 10 miles from the YWAM base here in Texas!

I had a very "divine intervention" this weekend concerning my surgery - my oncologist and my surgeon do not agree on the necessity of the axillary dissection. I have been really torn with the decision and finally scheduled it thinking I would err in the direction of too aggressive. This weekend, through several degrees of contacts, I had a 45 minute private conversation with a surgeon at one of the Baylor hospitals in Dallas who just happens to be a breast surgeon and researcher in sentinel node biopsy and breast cancer risk assessment. He reviewed my case and pathologies and strongly urged me to NOT have the surgery now but to proceed with chemo to treat the bigger risk of distant metastatic events- he said the lymph nodes are the minor risk at this point in my treatment and that it would be highly unlikely for me to have any node involvement with a 9 mm tumor and negative sentinel node.

SO, I am calling my doctors in the morning to postpone the surgery and proceed first with the chemo. He suggested that I get a PET scan in a year after I finish the chemo and herceptin and then if there is anything questionable, I could have the lymph surgery at that time.

I really hate that I have to figure out these decisions for myself - seems crazy sometimes when we are facing such major decisions on matters where the patient is definitely not the expert - but it seems with cancer, there are a lot of decisions that are just not clear cut.

Kristy

robink · April 2008

Kristy,

With your node status 0/3 what would purpose would the axillary node dissection have served? I am glad for you for the conversation you were able to have with the expert. It's wonderful you won't be having another surgery!

About decision making: there have been times throughout this journey that my husband and I have felt overwhelmed with all the information given us and the variety of choices. It is good to be empowered with knowledge but once or twice I/we wished someone would have told us exactly what we should do. More than once I have 2nd guessed my final decisions. At the end of the day I rest in the confidence that I made the best decision I could at the time and trusted that if God didn't want me to take a certain path He would somehow lead me down another.

So, if you are going to get a jump start on chemo will you be starting now in April? There aren't a lot of gals on this May 08 thread yet, but suspect more will be joining.

I didn't know much about YWAM except for a few persons at out little church who had participated in a DTS (discipleship training school) then our daughter requested permission to attend a session in Germany, delay her college entry by one year. Permission was granted and she was gone for 7 months. Shortly after her departure our son decided he would participate, same program, different location - left in October and was gone for 5 months. It was a tremendous experience for both. Then they came back to what is happening with me. Perhaps what they learned will aide them in this journey that does affect every person in a family.

KristyAnn · April 2008

Hi Robin,

They only took 1 node- the sentinel node in my original surgery and then I had an intramammary node that was positive. The oncologist thought she would have more info with the node dissection but the surgeon and the second opinion surgeon just did not feel the additional knowlledge justified another surgery given the low odds of having node involvement with a negative sentinel node.

I am starting chemo this Friday- which is April - but I think I will still hang around here. I might go read up on the April group too - some of them are already on round 2 if they started early April.

My son just called to tell me my hats and scarves arrived in the mail!!! I am one of those "get prepared and face it head on" kind of people so I already have some cute hats and scarves to be prepared for the hair loss. I will also probably shave my head after the first chemo- I might wait for the tingly sensation or I might just go for it to avoid the emotional falling out stage. Ive been wearing a hat to my daughters softball games to get used to the idea and so it wont be such an obvious change when it happens and I show up in hats!

I will be getting TCH - 6 chemo treatments (TC) every 3 weeks and Herceptin on the in between weeks- so its an IV every week for 16 weeks, then Herceptin every 3 weeks to the 1 year mark. I hope my veins hold up to this since I dont have a port!

Better get busy here at work since Im going to be out later this week- NOT excited about chemo but I am excited about moving forward in this battle!

Kristy

Mary-Lou · April 2008

Just wanted to wish you all the best. I am from chemo Nov 2005. We all still talk to this day. Stay close, and you will get through it ... There is light at the end of the tunnel....That is my real hair as it is today....Take many pictures!!!!!

angelsaboveus · April 2008

Hi Kristy,

I'm glad you don't have to do the AND, one less thing to worry about.

Good luck with your first treatment on Friday, please share with us how things go for you !

Sending good wishes your way !

drcrisc · April 2008

Hi Ladies,

Kristy directed me to this thread - I'm meeting with my medical onc tomorrow for the first time, so I expect to start chemo sometime in May. Not sure what to expect - I've only had to deal with my surgeon so far, who was GREAT...once I got over the fact that he looked like he was twelve!

I'm a psychologist and work in a prison, so I'm not sure about working during this either. There are a lot of "depends" still. I also have 2 girls - 8 and 4. My 8 y.o. looked at me in horror when I told her about the possibility of losing my hair. "But that will be weird!" Ya' think?!

I'm a little anxious about tomorrow because it is the only step I don't have any info about yet. I have already had a consult with my rad onc, so I feel like I know a little more there.

I will post more tomorrow when I know my schedule...

Cristine

robink · April 2008

Welcome Cristine,

None of us starting out knows what to expect - and that's what makes this site so beneficial. Once a specific treatment plan has been tailored to meet your needs then you can find more info on this site, and all over the internet. Have you had your surgery yet? If so I hope you are healing well.

Today I go for a teaching session regarding my chemo and will discuss a start date.

Keep in touch...

drcrisc · April 2008

Hi Robin,

Yes, I had a lumpectomy on March 21 and then a re-excision and SNB on April 7. This week was much better than last week - I can actually wear a bra without it killing me!

I know I'll feel better after the consult this morning. Thanks for the welcome!

robink · April 2008

May 1st

That is when my 1st treatment has been scheduled. I am far from thrilled but just want to get this behind me. My brain feels about as numb as my chest right now. Think I'd better rest.

More later

mpellot2004 · April 2008

Hi all, my name is Melissa. I will start May 1st also @ 10:15. I have already had radiation and now the chemo. I hadnt planned on doing it but have had 2nd/3rd opinions that say I should. So Ive prayed alot and here we go....

I know all of us must be having the same worries, Im so glad we can start together!

robink-are you taking the rest of the day off? I mtaking fri as well so I can hang low all weekend.

Have any of your oncologists talked to you about Emend? Its a new antinausea med, very expensive, but very worth it. They premedicate and then follow with a couple more doses on (I think) day 2 and 3. Check with your insurance to see if it covered.

Whats everyones opinion with human vs synthetic wigs? Or do you think they will be to darn hot either way?

lanihardage · April 2008

I see a second oncologist Monday and expect to get chemo in May. My biopsy was in January, followed by a mastectomy, but my first oncologist thought I didn't need chemo. She agreed to my request for the oncotype Dx but took two months instead of two weeks to do it. I have a fairly high risk of distal recurrence (aka metastasis), and even though she didn't think I need chemo. But everyone in the large national trial TAILORx with my oncotype score gets chemo, so I'm probably going to join the club. I cried my eyes out a few days ago and am better now, for the moment. My kids have a good book about moms with cancer, and I'm hoping they help keep me grounded and not too depressed during the process. They are ages 3, 7, 9 and 11.

robink · April 2008

Hi Melissa,

I have decided not to work during chemo as my job puts me at risk for illness, so yes - I'm taking the day off It was suggested that the weekend might be rough (fatigue) due to coming of the Decadron. Sounds like you'd be wise to take it easy over the weekend, also.

The antinausea med I've been instructed to take Thursday, Friday and Saturday is Zofran. I've also been given Compazine and Ativan for break through nausea.

As for wigs, I don't have a clue. I thinking of taking a drive to Denver to a highly recommended shop. My insurance will pay so I want to chose well. Once I begin accepting the impending loss of my hair I'll try to make the best of it and by a few extra wigs. Might as well have fun!

Enjoy your weekend

robink · April 2008

Hi Lani,

I'm sorry you're having to go through this but look at your future! 4 children! Do you have help, someone to care for them on days when you're feeling poorly?

Keep in touch. Hope your weekend is warm and happy.

drcrisc · April 2008

Hi all,

I met with my med onco today for the first consult. Apparently, I have 3 choices: No chemo (which just seems like asking for a recurrence) or the CMF cocktail vs. the Carbo/Taxotene/Cytoxyn. He said the only reason I have a choice is because I'm young (ha!) and had no positive nodes. If I were older, it would be CMF; if I were positive, it would be C/T/C.

So now I feel back to square one. I know they have to put all the options out there, but I just feel overwhelmed with having to make this kind of decision. HELP! What treatment options do others have and why?

LorenaB · April 2008

Hello there, just visiting from the March and April chemo threads (I just had #3 of 4 sessions of A/C -- almost done, woohoo!) Cristine and others with small kids, I just wanted to chime in and say that when it comes to hair loss, sometimes children will surprise you. My son is 7, and when he first learned that I was going to lose my hair, he looked shocked but said "I think that's kind of cool." Then when it got closer, he started having a really hard time with it. He asked me if I was going to look like a man, and then he drew me a picture (which was odd because he's not really into drawing). He asked me how to spell "before" and "after" while he was doing it -- the before showed a stick-figure woman with big purple curls, and the after showed the same person with a little bit of yellow chicken fuzz. Then when I actually lost my hair - -went to the hairdresser and had it shaved when it was getting impossible -- he immediately wanted to see it. I have a hard time looking in the mirror but he isn't bothered by it at all. I asked him if it scared him and he replied, "no Mom, I'm brave." When he sees I'm upset he holds my hand. And when I went to pick him up at afterschool, he announced to his friends, "Guess what? My mom is wearing a WIG!" like it's the coolest thing ever. Kids are great, they really are.

Mpellot - I'm sure you'll hear this once you start doing your research, but I did not even consider human hair wigs. They are really expensive (like $3000!) and need a lot of washing and styling. I have several synthetic wigs (2 of which were paid for by my health insurance) but I just didn't feel comfortable in them. I finally found a solution that worked for me on headcovers.com. It's a funny little half wig with a big bald spot in the middle and elastic all around, in the same color and similar texture to my real hair. When I put a hat on I can look in the mirror and see myself looking back -- and since it's not a whole wig it is a lot cooler. I've been wearing different, fun hats to work all week. Not everyone is a "hat person" but it's worked for me -- whereas experimenting with different wig "looks" turned out not to be my thing.

Sorry for writing a book, I just wanted to let people know that there are a lot of options out there, you just have to figure out what works for you. Hair loss is HARD.

Good luck to everyone, and please know that chemo is doable. It isn't fun, but reading about everyone else's experience really does help with the fear factor. Thanks to this board I was not terrified going into my first treatment.

Lauren

familyroks · April 2008

Hi all ~ I start chemo on 5/7 with my chemo education on 4/30. I'm alot nervous. Everything has happened so quickly.

My youngest daughter graduates in June, so I hate that I probably won't have any hair for her big day. I also have an 8 year old son that I need to explain what will be happening to his mommy.

I wish as smooth a journey as possible for all.

angelsaboveus · April 2008

Just when you think everything is mapped out.....I was supposed to go for my first onc visit today and they phoned and rescheduled for next thursday, that was dissapointing.

My surgeon was really good, i talked to him and he got the ball rolling on some tests that he knew the onc would ask me to do anyways. So liver ultrasound on wed. and bone scan on Friday, so that will put things back on track. So i think i'm still looking at May for chemo start.

Good luck to all of you starting chemo in the near future.

Starting Chemo May 2008

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