Starting Chemo February 2015

Chloesmom

Th top of my head is growing very slowly in patches. It is fullest at the front like a guy with a receding hailine that keeps the front middle section. The hairs are far apart so I know it would be really strange looking if it was longer. Every 3 days it gets like DH's face in the morning.

I actually got 2 wigs from catalogs. One was $75 and rhe other $109. The cheaper one looks better but I have a wide forehead and it has more material where the top joins the sides in the fron so it presses on my temples. Made it as big as possible and even cutting it tried adding a piece of elastic This made it so I could wear it 5 hours instated of 1-2, but then I get a headache. The pricey one is too full and I got it with bangs . The hairdresser thinned it out, but I don't have bangs as a rule and the tickling drives me nuts.

Today I sewed a piece of thin polar fleece in a 4 in wide band that cover my ears and forehead. It will make a nice base for a scarf and is nice and soft. Have a hat that is a tube of polar fleece fix off on one end like a pony tail. Not too hot for indoors.

Beachbum1023

MaryJC- I take 50mg of Amitriptyline at bedtime and Gabapentin 300 mg 3 times a day. I also rub my feet with Vick's and cover with socks at bedtime as well. The MO had me taking B6 but my level went way too high so I no longer take it. And my feet are still numb. The hands only bother me when I am tired or do too much during the day Take care

Darumama

On Wednesday I had a "day 6" post chemo appointment with my doc. I was a bit of mess physically and emotionally from coping with the first chemo and all the resulting SEs. I was also anticipating my PET scan result (which turned out to be good  - no evidence of mets) so there was even a little extra stress. Anyway, when the nurse asked about how my kids were, I cried. When the doc came in he suggested I try an antidepressant.  He ended up giving me a script for Effexor aka venlafaxine.  Not sure if I want to take it.  I will say this, they asked me to stay for some additional hydration and hung a bag of Ativan along with it (which apparently is an anxiety drug which can also help the nausea) and I did feel much better after. However, I feel like I'm a walking chemistry experiment and I'm reluctant to add another item to the list. Anyone out there have experience with Effexor/Venlafaxine? Is it helping you?  Thanks!

Beachbum1023

Darumama, Congrats on the PET!! That is great news. Is there anything we can help you with? My MO denies most side effects and pain issues so I find the best info here from all of the wonderful ladies that have been there. I try to look my normal, a little makeup or a bright scarf helps to cheer me up. Feel better! Drop in if you want to chat a bit!

Bikerbabe17

Darumama, I am not taking any anxiety meds, but have decided to see a counselor, just to have someone to talk to who isn't going to tell me it will be alright...not that I don't think so, I do, but I've lots of stuff to get off my chest that I don't want to burden my family and friends with.  Plus I don't think they would really listen and I don't want scare them.  So, if you don't want the meds, have you thought about scheduling an appoint with a counselor?  Just another option for you to consider.  We've so much coming at us, and some days its just to hard to process all of it.  This the time you need to put yourself first, which is almost never easy for most of us   You need to do what rights for you.  Hugs and hope you feel better soon.

Chloesmom

I have also seen a counselor. Had been having sleepless nights ruminating. Put all the stuff I was stressing about on a list an was able to talk to her about it. It really helped keep my wheels from spinning. My experience with families and friends with mental health issues is that the combination of counseling and meds is more effective than meds alone. A counselor can keep an eye on progress and advise if you might be able to do without the meds or wean off

This is a major life trauma. Think about how someone reacts to having a leg amputated. We had amputations that not only impact our appearance, they also mess with our hormones with all the fat removed. It's like going through puberty backwards. Before we could catch our breath and process all the 5 stages of loss. Denial, bargaining, anger, depression, acceptance..... We are suddenly in a chemo chair wondering what the h%#l happened. Like a Star Trek episode we have found ourselves on a strange scary planet where everything is upside down and we don't know what lurks around the bend that might hit us next

Now we are having all out energy zapped coping with treatment with poison. All the time we are trying to keep up a good front for our loved ones who in the back of everyone's minds worry.

Just as an example I couldn't figure out why my husband was yelling at the dog. Came to understand he's in the anger stage plus guys get angry more than cry to deal with stuff. I could only tell someone out of the family that the hair thing didn't really upset me that much as I wouldn't be much good to my family dead with nice hair.

As far as the meds go everyone responds differently to the same meds. What helps one person doesn't another. What give someone a SE doesn't another. I'm on a low dose of Lexapro which is for anxiety and depression. It has helped the rumination but the counseling was vital for me. My MO gives everyone Ativan for nausea which also helps the anxiety.

This place is heaven sent. My husband says I'm addicted to the iPad. You all have been my support to get through this nightmare as only you understand. Hang in there Darumama. We are holding you up in our thoughts and prayer. Keep us posted and feel free to vent if that helps.

BBwithBC45

Chloesmom, I'm on March 2015 Chemo thread, but I read February too, to get some valuable info from the ladies who are just ahead of me in treatment.

Thank you for putting down so eloquently what I feel. These boards are a great support. I'm "addicted" too.

TNBCinSTL

hi guys, just checking in and trying to catch up.

Jerseygirl, Darurama & Chloesmom, I definitely feel like if there was a time where I was to be put on meds for emotions, anxieties, etc., it's now. I was put on low lexapro, it's just coming on 2 weeks and I'm starting to feel a bit better with the overwhelming anxiety. . . also the 1/2 an ativan for when I feel like it's bubbling over and I'm curt with the kids. It sure helps. Maybe try the lexapro? I've had no SE from it, and it hasnt intervened with any of the other 20 meds I'm on (kidding but feels like it!)

Damselfly & Beachbum - going to shave tonight (not w/razor but maybe 1/8 clippers). I was going to last night b/c it's driving me crazy but by the time I got my older 2 home from basketball practice and showered, and bathed my 4 yr old, it was just late and I want them to see the process so they're not freaked out by it. I figured I'd ask 'daddy' for a hair cut and he'll shave it and I'll give my best acting job "omigosh what did you do that for, you don't want to be bald alone? silly daddy" I dunno, they know I'm going to lose it and are nervous so I figured I'd make it fun ;o)

vr23 - my hair just started falling out yesterday in shower, and my first round was Feb 20th so I'm 6 days ahead.....I'd say maybe 4-5 days or so? I'm a bit nervous too but I think just shaving it bf it starts really coming out badly will give you control of the situation. Get some good hats, scarves or even wigs, whatever you think you'll fancy, and be gentle with yourself ;o) it'll be OK, I promise you, and we will come out the other side with a much better perspective! xoxo. When I do my hair tonight, I'll videotape it and put it up online somewhere so you can see it, OK? think of all of us here as ur partners & supporters, we will be kick ass GI Janes together ;o) and kick cancer's butt!

Jaejk5

Geeze, the first day I have felt like myself since my first infusion. I now have blood in my urine. I don't have bad pain, just stinging when using the bathroom. Did anyone else experience this same issue? I have left a call for MO. Not sure what he'll do. Darn. I would like to now that it isn't so unusual. Other than that, feeling grea

Chloesmom

Gettin strong kicking cancer in the &@&$ working out..

Chloesmom

A little stubble on top keeps my scarves in place

Beachbum1023

TNBC, I shaved the hair right after the first AC back in August. I already had my wig made, so nobody knew it wasn't my hair, it looked the same. They just thought I had a new color. And my wig is way better than my hair was I only have to wash and blow dry it once a week, and a little flat iron and she looks beautiful. So huge time and energy saver. I wear a little stretchy wig cap under it and I haven't had any problem. My RO wants to know why I just don't go back to my real hair. Uh my wig is really pretty, and super easy is the answer for me. I do have scarves and hats too, but when the weather is warmer I'll give her a break for a while.

The good news is my hair started to grow back after the first Taxol infusion. So now it is over 1" long and super soft. The eyebrows and eyelashes are all back and thicker than before. My nails are all pink again, and growing out really hard. Nice bonus. I take Biotin everyday, but ask the MO before you do it for the hair.

I get the hair issue, it is who we are. But it actually turned out to be nothing to me. I wanted to sleep more than fuss with cranky hair! And no money spent on the wig, no cuts, no colors, no roots to do, a bonus when the money is tight.

You have a lot of living and loving to do with the family, have fun with it, shed a tear, and be ready to smile and laugh when they want to rub the pretty soft fuzz on your head when it grows back. Have a great weekend!

TNBCinSTL

Beachbum, yes I read ur last post yesterday! That is SO great and you're inspiring me to shave tonight! I will go shorter to 1/8.

VR23, What you're feeling is normal and understandable! As women, we do like to express through our hair! That said, I think there will be a great liberation once you do it and get used to it, which is why I'm so eager to do!

You are all so wonderful sharing your experiences! It is great to hear from all of you (AND SEE CHLOESmom ;o) that you're all on the other side and feeling great! A wonderful way to honor and validate for those who havent yet gotten there, that this is a JOURNEY, and each step while possibly scary, is DOable! and every milestone, a little notch in your belt ;o)

Im totally ready for tonight, I've got lots of plans this weekend and ready to rock my bald head!

TNBCinSTL

Jaejk - OUCH! sounds like a UTI which is no fun ;o( hopefully you can get that treated asap....keep us posted.

I dunno if helpful but found this:

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/understandingchemotherapyaguideforpatientsandfamilies/understanding-chemotherapy-more-side-effects-urine-bladder-kidney-problem

Chloesmom

My friend's older kids got excited when the hair started to fall out. They said "it's working!" Meaning mom was getting healthy

Ldavidson17

My hair has been slowly falling out since Weds.  Mainly lots of strands and no clumps yet.  Not giving it the chance tho.  My sister-in-law owns a salon so tomorrow I will be getting a nice buzz cut and she is going to style my wig.  When the first strands started falling out I didn't handle it well but now I'm so ready for this hair to be gone.  I'm sure it'll still be difficult tomorrow but I'm ready to rock my awesome wig, scarves and hats!!

Darumama

Thank you for your support everyone. It's so nice to have a place where everyone gets it. I'm actually laughing now because I'm looking at a second prescription for an anti nausea suppository my doc gave me and it's labeled as an antipsychotic (prochlorperazine). Talk about the stomach - brain connection!  Between the antianxiety pills and the antipsychotic suppositories I hope I can still have an original thought.

Chloesmom and Beachbum I think I will find a counselor. It really makes sense with this kind of stress and I also like the idea of these kinds of meds being supervised by a mental health pro. The mastectomy was like an amputation. The reconstruction feels like I've got tight rubber bands around my chest and the healing for the axillary dissection is still a work in progress. Before cancer hit I had a very busy life taking care of my elem school aged kids and working full time. In three months my life has completely changed. It makes sense to find someone to help me process all the physical and emotional changes.

I am only one week out from Chemo 1 so my hair is still hanging in. I've talked to my kids about helping me cut/shave it, but they are not too interested. Probably just scared as we face the next cancer hurdle. My son 11 said he just want me to look "as normal as possible" for as long as possible. Since that's probably only going to be for another week I think I'm going to do a big chop off, though not a shave, this weekend. My wig still needs a lot of thinning. I've never had great hair so it looks funny to me. I may even end up being a hat person. Too soon to tell. One reason I really did want to have a wig ready was not so much to wear with friends and family, but to have if I wanted to get away from being the "cancer patient" in the room when going out in public.

Tonight I'm dealing with killer menstrual pain. From what I've read here some of you have been through this already. Technically, I'm a week early but I know dates are irrelevant in cancerland. Might have to call the doc to see what to take for this. Worst cramps in years. 

 

Jaejk5

TNBCinSTL- thanks for the info. MO has put me on CIPRO for 7 days to clear up the UTI. I'm hoping I don't experience those SEs! What a journey. I enjoy and really appreciate this board. Thank

Chloesmom

We really did have amputations. Ourwounds just aren't as obvious!

Damselfly

Darumama, you should tell your Dr. you don't have your head up your a$ -- aw, never mind. That's hilarious about the antipsychotic suppository. So strange to think about all the changes we're going through. And good to see the women who came out the other side feeling good (eventually). It feels like a real change in life stage.

My hair is killing me tonight, if that makes any sense. I know what the kids and I are doing tomorrow morning! I think I will give it to the birdies to feather their nests.

vr423

thanks TNBC! You seem so brave

Thanks to the Canadian Cancer Society and a new friend who is a breast cancer survivor, I have two wigs and lots of hats. I want to find some scarves too!

live_deliciously

hi everyone. Welcome TNBC.

I have ct#2 Tuesday. I've been feeling great. Neulasta shot for me was uneventful. I'm grateful! And finally eating and drinking like a normal person. Only to have a do over (round 2) with only eating bland stuff for a few days. Still if I can have another treatment and get thru it same as last time then I'm good with it. The anti nausea meds worked great for me and other than the headache from hell the other se's were minor .

I finally got up the guts to make the hair appt to get shaved. It happens Monday if I don't grow my chicken legs first. That's when I feel like running away. Had the same feeling right before surgery and first chemo.

Met my RO for the first time yesterday and he showed me all my test on the computer in 2d images : MRI. Pet/ct etc. Way cool. I finally have the hope and confidence there will be an end to cancer land. He said I should be cured.. First time a Dr has gone so far to say that. Couldnt help but hug him and cry with joy

Chloesmom

The nurses at chemo said the SEs were cumulative, but I have found that CT #2 much easier than #1. Main thing is fatigue. Went for a long walk today now that the road has been plowed out. Felt terrific, happy to get out of the houseand then suddenly glad the house was only a block away. Back in the recliner with the dog on my lap

SugarCakes

I am a ways from any surgery but have a question as much of everything surrounding surgery is still confusing.  Would there be axillary lymph node remove without Sentinel lymph node removal?

Beachbum1023

Hi Sugar Cakes, I had a mastectomy on 12/15 with ALN removal for 5 nodes. It was done through one incision for me. The surgery was very easy, the armpit was the worst part.

live_deliciously

sugar cakes. Check with your Dr but common practice is to do a sentinel section first then if it turns up positive they do the aln. First they put a dye in you to trace the sentinel nodes tho.

PJfive

HI ladies.

 Good to hear everyone is doing a little better today. I am still doing great with really no SE's to speak of. My new MO thinks I may be one of those people who sails through chemo without alot of problems. I'll believe that when I see it because every step since I detected a lump in my breast has been one complication after another.

Sugarcakes that is a really good question. I wouldn't think they would remove axillary nodes without some indication of spread. I had a lumpectomy, wire localization and sentinal node biopsy at the same time. The two sentinal nodes were both positive for cancer with extra nodal extensions. This means the cancer was already growing outside the nodes and thus the need for an axillary dissection. So two weeks later I had my port placement, axillary dissection and 260 cc's of fluid drained from a large seroma that developed in the breast. I was in so much pain I spent the first night in the hospital in 41 years. The pathology report showed two more postive nodes with extensions and an upgrade to stage 3. I have had the seroma drained four times because it is so painful. I now also have to have a second seroma aspirated that developed where they removed the axillary drain as well. I am seeing a PT specialist because I am high risk for LE. My arm is completedly numb except for the constant pain that feels like a perpetual rug burn. It is very possible I may not regain any feeling in that upper arm or underarm area. I was fitted for a custom compression sleeve and glove yesterday that is basically a pain in the ass to get on and wear. Simple range of motion exercises leave me in spasms and aggravated nerves seem to pick the worst time to make themselves heard. 

Please don't let my story scare you but I strongly advise you to meet with your BS long before your surgery and discuss all your options and the risks. I thought I was well informed but have been completely blindsided by the complications. Whatever you decide to do I hope everything goes well.

PJ

MaryJC

live delici- that's wonderful news!!!! I'm thankful you had that moment and hugged him! So much anxiety with every appt. Nice to leave one feeling great and that he used give C word- cured!!!

Sugar Cakes- I did lumpectomy bec I clyjdbt afford the mastectomy recupe time with a toddler. But I'm considering going back for the double mass since I can now plan around it. I had nodes removed. My understanding is when they put that tracer dye, ANY nodes that look 'hot' they take out and send for pathology. Then they examine the chain itself. If micro-metatisis in first, none in rest of chain, or if fully positive in whole chain etc.

cubbieblue

PJfive you deserve to sail through chemo with all the other things you have had to deal with.  Whew!

Chloesmom

I had the SNB on my cancer side. The day before surgery they injected the dye by the tumor. It lit up the track to the nodes where the lymph was connected and fed that area which the doctor identified where I was under anesthesia for the surgery. They removed those nodes at the time of the surgery in the same incision. The area where all the nodes were puckers in a bit and is smoothing out with massage. I am very happy with my BMX as it's neat and nice and flat for my foobs