Sept 2012 chemo

jojo2373

Yes Marian, you and I are the oddball grade 3 er+'s. As my MO tells me that is a unique kind of cancer as er+ is usually grade 1 or 2 slow growing. Ah, to have unique cancer!

Timbek2

Really?  I never knew that Grade 3 ER+ was odd.  I think mine is the same.  But I do know that it was sneaky and almost didn't get detected when it did.  Oh the joys.....

jojo2373

Yes Becki, that is another reason hormone therapy works well as er+ is typically a slow growing cancer. Grade 3 will most likely require multiple hormone blockers over the years as it will find a way to adapt quicker than slower growing cancers.

jojo2373

Question, has anyone discussed post treatment scans with MO? I asked yesterday and my MO said I would see her every 4 months but would not be scanned often. She said radiation risks of frequent scans outweigh benefits. The more radiation could increase risk of leukemia. She also said marker results in blood work is not accurate assessment either and I should just monitor any new symptoms. That left me worried, anyone else hear their long term plan?

butterfly14

Marian - Here's to our numbers staying high. I am hoping and praying that nothing else happens between now and Tuesday so I can get chemo #7. So far on schedule to be done by Dec 31...

Jojo  - my MO has not said anything about long term screening yet.

I hope everyone is having a good weekend with no SE's 

bearcub

About long term screening I was told it would be normal yearly mammograms, that is it.....unless I had some SE. Scary...

Cocobean

Jojo- My MO kinda of indicated that we wouldn't to be doing many additional scans. He talked about self monitoring sysmtoms and his feelings on the inaccurary of scans, meaning I could have a scan in 6 months and cancer could pop up a week after that and not be caught on a scans, plus the risk of additional radiation. This conversation happened after my surgery and before I started chemo, which seems like forever ago, so I am definitely going to revisit it and get more clarity on what post chemo follow ups will entails. For me, I know I will need to work on dealing with fear and moving on when this is all over, but one step at a time. I'm not even done with chemo yet, but man, I wish I was!!! Getting there. 

Hopex3

Jojo: have they scheduled your surgery date yet? Mine is jan 24th. I met with my PS two weeks ago and was hoping we could do the nipple sparing surgery. I took my shirt off and he quickly said, Oh your not a candidate for that at all. You hang down too low. Well, I had to laugh at that...so I guess I get the tattoo's done. I've never had a tattoo before!



Had Taxol last Thursday and not having as much bone pain this time but fingers are sure numb. One more to go....then MRI on Jan 2nd.

Hopex3

I also asked my onc about scans after all is said and done and she said the same thing as some of yours. I will see her every three months for two years. I said what about scans and she said they don't do that. She told me if I were to have a reoccurence , my body will tell me by having strange aches. Well, my body told me about this tumor. It does scare me not to even have a pet scan at some point though. But I guess like you said, cocobean, that is our fear and we have to work on that with time. I can't wait to move on either but I'm still facing a masectomy with reconstruction so I still have a ways to go. And growing my hair back.....

Toastiecat

My doc said the same thing, no routine scans. I was surprised, because with my husband, he was getting PET scans every 3 months, then 6 months, now yearly (he had lymphoma). It does make me worry...I'm the sort of person who clings to empirical evidence, lol. I'm wondering if being in a clinical trial like metformin will mean getting imaging as part of it?

QueenKong

Hi Everyone,

I survived my surgery yesterday and am home recovering. I am very sore. My pee is blue and I've still got some blood coming out of my throat. My neck hurts like hell. The arrival time was 8am and I was the last one to leave the recovery area at around 9pmish, no over night stay. Because I had such a good response to the chemo, the doctor removed tissue surrounding the clip that was used for my biopsy and some nods for testing. The pathology reports will be back by next Friday. He said that it looked good when he went it and that he doesn't often see such a good response. I am hopeful and waiting for the results to come back. I have this giant bandage wrapped around my torso. He cut into the side of my right boob so I suppose it's a lumpectomy. I am lucky considering that the tumor was over 6 cm in August. I'm so sore and miserable. I can't imagine what a post mastectomy surgery must feel like. The surgeon assured me that the pain I will suffer will be a good thing because it means that the nerves weren't cut and I wlll be better off in the end to have feeling left in my side.

I got so sick after the surgery when I tried to leave, I felt like I was going to vomit and had to go to toilet about 10 or more times. It was so unpleasnant. It took forever for the doctor on call to get me a nasuea pill. I couldn't leave and just an hour before I had wanted Chinese food. I eventually got the pill. I never did throw up and I am so glad because my muscles are already so tender from the pneumonia and with the surgery, it would have been so painful. Mentally, I was begging my body to not heave. I think that pill they finally got me worked. Those nurses were so damn nice.

I hadn't eaten since the day before and my the time we got back to Brooklyn, I wanted the Chinese food again. We got a bunch of take out and I was eating it at 11pm last night by the time we got home and settled. Of course I didn't sleep even with the meds. The pharmacy next to the hospital shorted me five (5) pain pills. I called today and the pharmacist was really weird about it. That's the first time that has happened to me. 

I gained a lot of weight during surgery. How could that be possible? I'm 8 lbs heavier. It must be water retention or something. I didn't eat that much chinese food. It was super good though. That's the first time I enjoyed food in a long time. 

I wanted to go out today but didn't. I hurt so much and didn't want to walk down the stairs. Both of my eyes are black and blue like I have been punched in the eye. What did they do to me in surgery? It makes me wish there was a film of it. We should be able to watch a video of what happened while we are knocked out. I hope tomorrow is better. I get to take this bandage off.

My daughter is 7 and she told me seeing me with the bandage wrapped around me that she feels scared and cold inside for the first time. She told me twice today. I had her at friends for a sleep over last night and today DH kept her busy. It was heart wrenching to hear that. I tried to reassure her that I was going to be okay.

I am going to go read the rest of your posts now. I wish threads were staggered so we could post on each one.

One great thing I have to tell you all about, a hint I found here. I had bought slippery elm that was recommended and happened to have it in my bag. I never used it but thought of it because my throat was so sore after the surgery. It help SO MUCH. It was one small miracle. 

QueenKong

I read all your posts. Reading them calms me, makes me laugh and cry. You all are such good writers and have so much courage. Thank you for sharing here. It helps me so much to know others are going through the same, even the steriod rants and the bitching are all good. 

The medication is telling me I can not respond to each of you individually as I am too confused.

I think this may be strange but I am wondering if I missed the boat in getting a boob job paid for and reducing my risk as so many of you are getting double mastectomy and I didn't opt for that. I have really big breasts and was always thinking I'd get a lift and a reduction after child baring days were behind me. 

There was one point when I was super depressed, I found this website with the women who had a masectomy and then had a giant tattoo across her chest instead of reconstruction. I found that site when I was not sleeping for days and was pretty depressed. She had a great attitude and took a lot of half naked pics of herself modeling clothes she redesigned while she went through treatment and was gaining weight from chemo. I haven't been able to find that site again. Seeing her doing that when I was just starting out gave me hope. I could deal with having both my breasts removed and getting a tattoo like that if I could survive. Now, I am wondering if that was a real tattoo. I can't find her site again. Does any one know this site?

So much thinking and I can't sleep even with the meds & no steroids. So many hot flashes!!! 

Mariposa123

Queenkong:  It sounds like the surgery went super well and I am so happy that the doctors said that the chemo worked its magic!!!  That must feel like such a relief.  It is understandable that your daughter would be scared, but she also at this point knows how strong you are.  What a wonderful role model you are for her.  My daughter asks me sometimes if I am going to die.  I tell her that right now, none of my doctors nor do I feel that will happen.  I tell her that I am strong and that I am doing everything I can to fight this.  I also tell her that if anything were to change, I would let her know.  I don't want her to feel anxious that I wouldn't tell her something.  I want her to feel empowered that she has all of the information that I have.

I laughed when you said you gained eight pounds in surgery - just because I swear,  I go to bed at night and wake up and gained six pounds.  And I am like, what the crap happened???  Did I get up in the middle of the night and raid the refrigerator?  It is ridiculous.  And then two days later I will lose five pounds for no apparent reason.  Depending upon the day, I have gained either 10 or 15 pounds since beginning chemo.  Does not make me happy.

As for the double mastectomy, I think alot of it is fear based for me.  But I am also super afraid of the idea of losing all sensation in my chest.  It makes me incredibly sad.  When I was young I was always a bit disappointed by my breasts- I guess I wanted them to be more exciting, bigger and better.  Than I had kids and breastfed both of them and all of the sudden loved my breasts:-)  I loved how they could calm a crying baby and put him/her to sleep within seconds.  Now, I feel sad to lose them... but like I have said before, they are dense and have always been suspect.  I had a biopsy on the other breast when I was in my twenties- so it seems like a good idea to just say good bye and move on.

I hope you are able to get a good night sleep.  Thanks for letting us know how it went.  I am glad you are home safe and sound:-)   Hope the pneumonia pains have lessened too!  I can't imagine having surgery with those kinds of pains. 

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QueenKong

Thank you for your kind words Mariposa. 2:30am ans still not asleep. Maybe you are up raiding the fridge? I'm reading your blog, I love the drawings. Too bad you are not boring, it would help me sleep.

jojo2373

Queen - so happy the surgery went well for you and praying the path report is a ok!  You didn't have any drains?  What did they say your recovery time will be? 2 -3 weeks?

Was going to start a semi diet yesterday, but instead ate more than ever. UGH!  The other me said "you fiinished chemo live it up".  Mental note - try again on Monday and say it's all steroid bloat anyway.....

Amy4978

Taxol se`s have not been fun this week.... And I feel like I cant take the time to just relax and rest with 2 small ones in school having christmas parties, field trips, finishing christmas and traveling to see family.... this coming week may just put me outof commission...



My legs feel horrible and my energy is no existent at this point! I am dreading chemo the day after christmas.... One of those days where I want the old energetic me back!

Cindi74

Hi Amy,  I had my second Taxol last Wed, and have one the day after Christmas also.  So far the pattern has been,  Chemo on Wed., feel ok until Saturday morning--then shoulder and hip aches and no energy until Tues--when I was a litttle depressed at the idea of feeling wrung out with no energy for 11 more weeks.  Now I suspect that I will feel ok the day of chemo and two days afterwood.

I weigh every morning with almost nothing on--and the pattern is that I gain 4 lbs the day of chemo (all the infusion bags and the two to four bottles of water I drink that day.)  Then I lose those four lbs over the next four days. 

When I had the first A/C in Sept, even with the nuesta, it wiped out my WBCs, so I had to have five nepogen each of the next five days.  I talked the Dr. into a prescription for the nepogen  (a set of 10)--and then never had to use it because the Oncologists reduced the A/C dossage.  Then. no need after the first Taxol, but did need nepogen after the second, and DH got to give it to me at home.  (no hour wait at the cancer clinic.  I figured before that each shot cost me half a day going to clinic or hospital and waiting.)  Home much more convenient and easier.

The Taxol is definitely easier than A/C, but I still have no energy.  Am still learning and enjoying The Emperor of Maladies from Audiobooks. All you young moms, hug them tonight.  And all the rest of you,  Hugs to you brave Superwomen-you working moms.  Hang in there.  We will get through  this.

Hopex3

I want to reply to some of your recent posts but I think I've already answered them previously so I scroll up to see what I've said. And sure enough, i have the same stories going on a couple of threads. So please excuse me for constantly repeating myself. Lol. Chemo brain at its finest.

jojo2373

Hopex3- here is my sad example of chemo brain. DH and I get ready to leave yesterday to shop and he says where are ur keys? I said you drove last so please find them. We looked everywhere and I got mad at him. After about 10 min of searching, I look down to see they have been in MY hand the whole time. Never remembered grabbing them or even holding them. Crazy!

Amy4978

Cindi.. The day of chemo and after I feel like my old self again all hopped up on steroids but as the weeks progress the bone and body pain are def increasing... 16 treatments is a lot!



I dont prefer either chemo but at least with the ac I had a period of normalcy. This weekly taxol feels like I have no time inbetween.... But on the plus side only 5 more togo!



Today I finally just said screw it and watched 5 episodes of parenthood... Still in season 2

Hopex3

Amy...I'm hurting today with the bone pain after having taxol 4 days ago. I took a pain pill but it really does nothing except makes me hot! Ugh! Hope tomorrow is better. We can do this!!!



I was going to start watching parenthood today too but there is a lot of episodes to catch up on. Do you know which one it is that she finds her cancer? Maybe I will just start there.

Timbek2

Hope. You can just jump into this season. She found her lump just 4 episodes ago I think. Hope your pain subsides. Today is my worst day usually for taxol. It's only up from here. Hoping I have more energy to bake some cookies tomorrow. . No se's to all of us. Xo

Cindi74

Amy, the steriods explain why I felt better for two and a half days.  Yuch.  Oh well, only 10 more to go.  Hugs.

Hopex3

Timbek2...thanks...I will just start from this season then! Gives me something to do at 1:00 am!



Does anyone get restless legs too at night?

Amy4978

Its official im an addict... Lmao already on season 3 of parenthood I think I have become one with my couch....

Toastiecat

Amy I love your new pic!



Ladies I'm going in for surgery tomorrow...troublesome TE has to come out and get replaced with a new one. I'm pretty nervous, more nervous than I was for the BMX. I think before I was too busy being scared about the cancer to be scared about the surgery. On my second Ativan, having snacks and water before the midnight cutoff.



Hope you all are well!



xoxo

Cherioo

Amy cool picture. Hey as anyone's eye lashes come out yet eyebrows . Mine came out fast . My loved my lanes hoping they come back quick . My head looks like a major chia pet . All fuzzy and white

sherbab

Amy, you and I are on the same schedule.  Counting down the 5 that are left!  Congratulations to all who have finished their chemo treatments!

Chemo brain is definitely in play.  I even sent some of my closest co-workers the article about chemo brain to make sure they were all in sync with what is going on.  I wonder how long the side effects take to go away - anyone have any feedeback in this area?

Cheerioo - my eye lashes and eyebrows are coming out now.  It is a bit of a downer since I only have 5 to go but I have talked to a lot of people who actually lost both after they were totally done with chemo.  Very strange to me!

Mariposa123

Toastiecat:  Good luck tomorrow.   I am sending lots of positive energy and prayers your way.

I hate to say it for fear of jinxing myself, but I still have my eyelashes and eyebrows.   My eyebrows are shorter and my lashes a bt more sparse, but they never completely left me.  I started using Ovation Hair a few days ago (Christmas present from my father in law).  I do have more growth than I did last week.  We will see how it goes.

Hopex3:  I have terrible restless leg syndrome.  That mixed with the neuropathy makes sleeping super hard.  The new med I am taking for neuropathy seems to help a bit with sleep luckily. 

Hope all of you ladies on Taxol start feeling better soon.  I don't know if the muscle pain is the same as taxotere, but it is horrible!!!  I still have it, and I have not had an infusion in over a month!  I think mine could be more neuropathy. 

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QueenKong

Toastiecat: Wishing you all the best tomorrow. You will be in my thoughts. 

Cheerioo: My eyelashes and eybrows started falling this week, was so hoping I'd keep them.  I'll need to learn how to draw eyebrows and glue on eyelashes. I have no skills in these areas. I hate losing them. 

Hope: I started watching Parenthood this season on the recomendation of a friend. We text while we watch everyweek and she catches me up on some of the story lines but you don't need to see the previous seasons.

Jojo: no drains. I don't know how long recovery will be. I think my healing will be slower because it seems like since the chemo, everything takes longer to heal. I need to look into some supplements. I've been doing a bit of peripheral massage to stimulate that healing and get some blood flow into the area. 

Today was the day I could remove the bandages and stretchy thing they wrapped and taped around my torso. Taking those off was a harrowing experience. I thought I saw a hole in the side of my body next to my breast and I yelled for DH. I was over-reacting. It was the blood on the sutures that are holding me together on further investigation. I have two sealed up incisions, one on the side of my breast and one in my armpit. I took pictures. There's bruising, a lot of swelling. It's rather gruesome. The breast is swollen. 

I need to figure out some kind of bra or different clothing. I don't have clothes that fit me properly any more. I wish I had a lot of camisoles made from silk or soft cotton with a bit of support for my breasts and more zipper things. 

We went to a friend's house for a small Christmas party today. It was easier standing easier than sitting. The worst part was the car ride, I swear I could feel every bump in the road. 

Everyone getting chemo this week, try to keep thinking about how this will all be pretty mucch over by Spring. That's what I think about. The winter is going to be tough, really tough but by the time Spring rolls around we'll all be climbing up and over the ledge and there will be cherry blossoms. Unless of course you are in Australia.