Chemo May 2011

Robyn_S

Patriotic and MamaV - thsnk you for the detailed list of Taxol SEs  - it helps so much to know what to maybe expect. I have done with FEC and now looking ahead to 3X taxotere. As the main SE that bothered me on FEC was the nausea and gastro shock - i will like the change of scenery! I cannot take aspirin or ibuprofen so am a bit concerned about managing bone pain as that seems to be a common SE of the taxanes. Did your bone pain need any analgesia?

Laureen  - it seems as tho we are on the same chemo regimen timetable! I also have 25 rads after chemo to look forward to before I start getting expanded and reconstructed hopefully by the end of the year! I know what I want santa to put in my stocking! New soft foobies!

I had a BMX with expanders put in (March 31) and have to wait to get expanded after rads. Is anyone else putting up with expanders and looking forward to reconstruction? I shouldnt complain too much as I have had no infections or problems - but aargh they are uncomfortable! It is very hard to feel attractive or sexy during chemo even without stiff weird plastic things clasping your chest muscles complete with hard folded bits under the skin and skin ripples!! My BS thinks that they look great..sigh.

Cyborg

Bkj66- I ride in my car bald ( or with very little hair) and take out the trash bald and am bald all the time in my house. When I go have coffee or grocery shipping it's a hat or scarf. I just recently got my Gaila. I received one for free cause I am a chemo patient. It's very cute. I had fun wearing it today. I am also happy to heat that your response to the AC is positive.

Please take care, Blondelawyer. Good luck to all who are in tx this week.

MamaV

Robyn - I hadn't taken hardly anything for pain. Doc said I could take the vicadin left over from my surgery but havent needed it. This week was worst so far and took alleve and ibuprofen and was ok. Heating pad too. Don't suffer if you find you are in pain! Ask your doc for something!

blondelawyer

I feel like my skin is so sensitive.  I wore a pair of sandals the other day for about 2 hours (and they are sandals I have worn many times before) and got sores on each of my feet from them.  Then I got a tiny blister that is now a sore from who knows what (I swept the floor for like 2 minutes and that is the only thing that I can think of that I did).  Is this a SE?  My nose is also bleeding, which I know is a SE and I have mouth sores  Can we just say that chemo sucks?  

I'm out of town this weekend, hoping that a change of scenery will help, but honestly all I feel like doing right now is curling up in bed and crying.   

40-years-old-now

Hope you enjoy your weekend away. I understand the curling up in bed, I just feel like sleeping right now, but I have to get ready to go to get my neulasta shot in a little while.

bak94

38 and blondelawyer, I know what you mean. I didn't make it to work today, fingers hurt too much, all I want to do is stay in bed, and that is basically what I am doing, other than a few things I needed to get done. I am cold but do not want to put a hat on or turn on the heat, its June for goodness sake! Too tired to read, bored with tv, sleepy but can't sleep.

I think part of my problem is staying hydrated, I do not like gatoraide, but it seems to make me feel much better when I drink it.

Beaglesgirl

I hear ya, I feel that the hydration issue is what knocks me down some days. I used to love water and now it's tough to get it down Gatorade does help but tougher to choke down.

Cyborg

Hi!I am still in San Diego at my sister's house and I am bringing my mom home with me. She is staying until Wednesday. Then I bring her home and stay in San Diego over night.



Having radiation in about 4 weeks. Wondering what kind of bra to get ( cause I am hard to fit anyway) and my sister suggested going to a maternity store and looking there since I am looking for a bra with no underwire.

bak94

Cyborg, did you have your last chemo?! Did I miss that?

MamaV

Cyborg, I will start rads in about six weeks. My RO and others before me said cotton sports bra or tank tops with bra shelves. I heard target and walmart have them cheap!

DebRox

Cyborg: I had to be fitted with a compression sleeve at a shop that sells products and supplies for women with breast cancer. They had special bras, camisoles etc. All for women with medical needs. It is in orange county, and if you are interested, I'll look up the name and phone number. Since you have to drive this way you may wnt to check it out.



Incidentally the compression sleeve is covered on insurance. Ask your rad onc if you need a prescription for a special bra, maybe it will be covered. Trying to save you a few bucks.



MamaV: yeah only 2 to go. You are definitely on the home stretch. You'll be done first week of July!



I know the feeling of curling up in bed too. Sometimes everything seems so overwhelming. Just trying to take one day at a time.

blondelawyer

For those of you that don't like gatorade, have you tried nuun?  It has electrolytes and is really lightly flavored.  Doesn't have the calories though if that is what you are looking for.  I used it a lot when I was training for events.  

Cyborg

Bkj66- last chemo is right after fourth of July. I am actually scared to STOP chemo. I am just preparing for radiation.

Mamav- thanks for the tips! On the sport bras etc. I am trying to get away from the uniboob look of a sports bra and since I am so big in the front and very small in the back it is hard to find a bra that divides and separates. Thanks, Debrox for the tips as well.

*I am up at this crazy hour cause of nightmares.

neecee

Cyborg - sorry about the nightmares.  No fun.  Other than an initial consult with my RO before surgery, I've not had any discussions about when my radiation will start.  My BS said they would give me a "little break" after chemo before they started radiation, but I have no idea how much of a break. I figured about a month after my last chemo cycle.  Sounds like that is what they are doing with you?

bak94

Cyborg, I know stopping chemo can be a scary thought, but the radiation will continue and get any leftover cells, if there are any. After my first bout with this I was terrified after stopping chemo, and of course started having weird little pains. My doctor back then was not into scans, but it was ok cause the little pains would go away. I did develop a slight cough from radiation and my ribs hurt on that side for quite awhile, I was convinced it was cancer but the docs all said it was normal and it did eventually go away, I think I did have a chest xray for the cough. which turned out fine. Sorry about the nightmares, they can seem so real sometimes and be very upseting.

Blondelawyer, thanks for the suggestion, as I do not like all the added stuff in gatorade, I will try nuun, do you get it almost anywhere like safeway or fred meyer? Gatorade is too sweet for me, and I get the low calorie stuff, I don't need extra calories!

40-years-old-now

Cyborg, The radiation was easy for me. I had started both chemo and rads on the same day. I had the rads on my arm and leg. The tatoos were weird to get, as I never thought I would get a tatoos. I gave up on modistity, as to line up the marks for my leg I drop trow.

I had 10 treatments of rad, no side effects on the skin or anything. I am expecting to get more rad after chemo on the breast, lung and liver. It all depends on everything else.

I am trying the claritin, and so far it seems to be working. I am very very very tired but atleast I am not in serious pain. We will find out for sure tomarow how well it works.

Hope you all have a good weekend with little or no side effects.

Candice

MamaV

I met with my MO for the last time before chemo will be done! (July 7 is the last chemo!). He said to call RO next week and tell them I'm finishing up. Said they give u about a 4 week break between chemo and rads. Puts me 1st week of august. Cyborg we will have to start an august rads board soon!

Beaglesgirl

Yay MamaV!

blondelawyer

bkj66:  Nuun is getting to be more readily available.  I think that I saw it at QFC.  Not sure about safeway or fred meyer.  REI carries it.  Ballard Market in my neighborhood carries it too.  It comes in a little tube--look in the area where they have crystal lite.  Oh, and the Pure version of crystal lite might be another option to try.

Does anyone know if they ever do both neoadjuvant and adjuvant chemo?  I'm doing neoadjuvant to shrink the tumor--with no luck so far. I still have 3 or 5 AC treatments left, so there might be shrinkage, I don't know yet.  But will that chemo be sufficient to kill any other stray cells?  I'm going to ask my MO on Monday, I'm just worrying about it right now.

Also, still worrying about the surgery and reconstruction decisions that I have to make.  I know that I want a BMX.  I know that it might seem extreme to some people, but considering the aggressiveness of my tumor (the darn thing grew during 3 weeks of Taxol) (it's also grade 3 and I have felt it grow since I found it at the end of March--it was also documented as growing between MRIs 1 and 2 and then more between 2 and 3), my TN status, my age (I'm 33), and my anxious personality, BMX is what I want.  I've also found a some research that shows that lump + rad has much higher recurrence rates in women under 40 than MX and also research that shows that there could be a survival benefit for women under 50 who are ER- to have prophalactic BMX.   So, my gut is telling me that BMX is for me.  Is that totally unreasonable?  Right now my tumor is about 6 cm and is in the upper quadrant of the breast.  I have pretty large breasts (DD), so there is more to work with.  But a lumpectomy just does not feel right to me--I literally feel sick to my stomach when I think about that.  I have that research, but the rest is just my intuition.  I know that the recovery will be harder and that reconstruction will be even worse, but I'm willing to go through that for peace of mind.   

I'm anxious to discuss with surgeons because I do not want to have to "fight" to get what I want.  I have no indication that the breast surgeon I saw will fight with me, but I am so used to having to fight with doctors from my experience with my husband.  I know that if I get resistance from the surgeon I can just find another one, but I just don't want the stress.  So, of course I am having anticipatory stress over this!

And then there is the reconstruction issues--I don't even know where to begin.  

I'm supposed to be on "vacation" not stressing about BC, but I can't seem to help myself! 

bak94

blondelawyer, I think you are making a wise decision going with a bmx, but most importantly you need to do what you feel most comfortable with. Reconstruction scares me also. I saw a plastic surgeon at the Polyclinic and he told me I am not a candidate for tissue expanders and implants and suggested diep. To me diep seems like a much more serious operation. It was also recommended that I do not do immediate reconstruction because I will need rads after mastectomy, so I have to wait 6 months after rads to heal to do reconstruction. The plastic surgeon gave me some names of surgeons that do diep, as he does not do them. I don't want to be without boobs for 6 months, but I will do what is best for my health.

Some here have talked about doing neoadjuvent and adjuvent chemo, Suze35 and dclw both are doing neo and adj. Do you know if you will need to do rads if you do bmx? I need to because of my positive im nodes, I will have a rather large radiation field I am sure. Do you know if you have positive nodes? My im nodes showed up on ct/pet scan and mri.

blondelawyer

bkj66: Thanks for the reassurance. I think that I just need to hear that I am not being unreasonable in wanting BMX.  

 I do not know yet if I will need rads.  I am going to talk to my MO about it on Monday.  My tumor is rather close to my chest wall, so if they can't shrink it much, I imagine that I will need to because of that.  We don't know about any nodes.  There was one node that they looked at via ultrasound, but it looked okay.  So, my understanding is that they are considering node-negative right now, but they don't know for sure since they haven't cut me yet.  I'll be asking about all of this on Monday as well.  

Do they not do reconstruction at Swedish?  I saw the brochures for the Polyclinic in the cancer education center.  As much as reconstruction scares me, I don't think that I am prepared to go through the rest of my life with no boobs.  I can deal with a temporary no boob situation if necessary, but I don't think that I want that for my whole life. I'm only 33 and have had huge boobs my whole life.  Damn cancer!  I hate it!!!

mccrimmon324

Blondelawyer, I am large breasted as well, once I was diagnosed everything happened so fast, I had a lumpectomy 2 weeks after diagnosis, it wasn't until after the surgery I found out about being TN - after I finish Chemo and Rads, I plan on having a conversation with my onc about a double masectomy w/reconstruction.  I wasn't given any options in the beginning and would have opted for that if I had known. 

MamaV

Mccrimmon I was rushed into a lumpectomy too - now Im getting BRCA test. Kinda mad that wasn't done first so I had more info. It wasnt even mentioned and I didn't even know about it before all of this. I have zero family history so I guess they didn't think I needed more than a quick lumpectomy but looking back I feel like I didn't have enough information. Time will tell I guess ...

bak94

I guess there is not a plastic surgeon at swedish, I was referred to Dr. Welk at the polyclinic and I really liked him, wish he did do the diep. One of the names for diep was at virginia mason, another, his first choice, is in spokane. I will look up the name at virginia mason and let you know. It was Dr. Beatty, my surgeon, that recommended Dr. Welk.   It seems that surgeons don't do both reconstruction and bmx. I have the same attitude as you, and I am 11 years older! I can't see not having boobs, although there are many on these boards that say they actually like it better and that it is kind of freeing. I saw your other post and wanted to say that the surgeon said I needed to be down to a certain weight for diep, so I need to lose another 20 pounds, I have already lost 30.

Mcrimmon and MamaV, that is how it was with me the first time I went through this. I was a perfect candidate for lumpectomy and that is what was suggested and I just went with it. Lumpectomy was kinda nice though, easy recovery and no recon. 8/9 years ago it seemed like more were doing bmx and I was one of the few doing lumpectomy, now it seems more like half and half.

blondelawyer

It seems strange that there are so few options in a city this size.  I talked to someone who went to NY for breast reconstruction the other day--I wonder if it was for DIEP.  Considering the extended recovery for it, if I have to go that route, maybe I'll look into going to either Denver or Miami so that I can have family to take care of me

bak94

I agree Blondelawyer that there should be more options in seattle.

I am bored and it is a beautiful day in Seattle. Hubby is at work and I have been laying in bed with the dogs all morning. I don't feel like putting on my wig to go anywhere and I don't want the sympathy stares I get when I wear a hat. I think I will  go for the wig anyways and take the dogs for a drive, go to starbucks drive thru and get a green tea. Doesn't that sound exciting-not, but at least I will get out of the house, maybe it will motivate me to take the doggies for a walk at a trail. I shouldn't complain, at least I feel good enough to be bored! I had a good day at work yesterday and even went to costco after! Had to have help getting the 50 pound dog food in the car, but oh well.

I can't believe we are about to send MamaV and Cyborg off to the rads boards! I hope you will still visit here often, some of us will be here for awhile! You both are reaching the light at the end of the tunnel! And remember, there is a light, even with the fears. The fears will lessen as time goes on. I can't wait to hear about hair regrowth!

DebRox

Great idea bkj66. Go for a Starbucks, take your dogs with you. Once you are out with them and look into their eyes, you can't but help take them for a walk. It will e therapeutic and you will feel better. I know when my dogs give me that look, I can't resist taking them on a walk.



Right now I'm itching to go for a walk, but it is too hot and sunny outside, have to wait until after 3. I'm thinking of moving up to pacific northwest next summer. Want to get out of CA.



Yeah for mamav and cyborg, nearly finished. I could be joining them on rads boards, not sure when. Please drop in here every so often to let us know how youre doing. So happy for you guys, end of chemo right around the corner.



Blondelawyer: I think youve thought your decision through and it is your body. I don't think doctors will persuade you other wise. In your position, I would opt for the same decision. Hopefully you can find the type of recon you require and a surgeon.

blondelawyer

Thanks for the encouragement everyone!  I think that I will feel better tomorrow after I talk to my oncologist.

bkj66:  enjoy the Starbucks with the dogs.  Sometimes it is the little things!  The maid (I'm at a hotel) just spilled my latte all over the floor  

I am about to have my photo shoot and am terrified.  I feel so ugly and fat and did I say ugly?  Ughh...I am praying that the photographer can work some magic and make me look decent and hope that I don't regret this.  I have been on the verge of tears all day.

 Okay, and this is SO unimportant in the grade scheme of what we are all going through, but does anyone have a good idea to get rid of a HORRIBLE farmer's tan?  I got a horrible sunburn at my fundraiser and the lines that it left behind are horrendous.  As it is getting warmer, I would love to be able to wear a tank top--but literly look like I'm wearing a white tee on my shoulders.  I know, vain and unimportant, but I am already bald and scarred, is it too much to ask to be able to wear a darn tank?  Any suggestions?

Patriotic

Ladies, I am also considering a DIEP. Yes, it's major and getting up the courage to do it is tough. But, I have talked with and seen two that have done it and they look great. It's a very specialized surgery with only about 50 docs nationwide that do it consistently. Here's a list:



http://www.diepbreastreconstruction.org/diepdocs1.htm



Congrats to MamaV and Cyborg!!



Blondelawyer, try sunless tanner. The cloths work good with covering some areas while avoiding others.

bak94

Patriotic, thanks for the link. It list Dr. Isik of the Polyclinic, but from what I understand he does not do diep, or maybe he just wasn't recommended by his coworker:(? The ps surgeon I saw at Polyclinic did not mention him, and also did not recommend the dr at scca. I really can't believe it is so hard to find a diep surgeon in seattle.

Today turned out better than expected. I took the dogs to a dog park and ran into a friend. We hung out for awhile at the dog park and then I went shopping. FOund a floppy hat for summer!