April 2013 Chemo Group

shipsgirl

Congratulations Anne!  Welcome to the "other side".  You made it!!

Jen987

Woo Hoo Anne.  Now onto healing from all that chemo.  Take it easy on yourself.

6cats

Since September 5th I have put on ten pounds! (was on weekly taxol) MO kept telling me to watch what I eat and exercise. Finally, my legs started swelling this week. When I saw my MO, she put me on a diuretic. Three days on and see what happens. Three days off and see what happens. I pray that a significant weight loss will occur. I see her again in three weeks. (Interestingly enough, my blood pressure was also going up.)

Received my first Herceptin only infusion today. The MO said it would be like receiving an infusion of water... Hmmm... drugs in my body vs. water in my body... gotta think about that one.

Jen987

So I ventured out to dinner without a hat for the first time.  It wasn't as bad as I thought it would be.  My kids didn't even notice until we got back in the car.  They are so used to me wearing nothing on my head in the house. 

I had my follow up mammogram last week.  She took alot of films then I was asked to come back in for more, before I left.  Ugh.  Eventually I was told I was good to go.  Then in the mail I receive a letter that reads:Your recent mammogram examination showed an area that we believe is probably benign.  However, a six month screening is recommended.  The area of concern should never be ignored despite a normal mammogram.  REALLY, you're gonna send that kind of a letter to someone who just underwent treatment for cancer.  I wasn't freaked out but I did call the nurse and she said thats kind of a standard thing because now that I've had a lumpectomy and radiation the breast looks different than the last mammogram.  This is my new normal.  I told her that they needed to reword the letter because someone who isn't as calm as me could really worry.  haha

Tamoxifen has been an experience.  I have had sleepless nights, body aches, fatigue and plan just not feeling great.  I hope the SE's subside as my body gets used to the drug.

I have been trying to get a hold of the girl who schedules the appointments for my port removal and she's not returning my calls.  I'll try again on Monday.  I want it out.

I hope all are healing and starting to feel alittle more normal.  Enjoy your weekend.

anne11595

Lynn,hope your doc. Is right about the water in your vain. But as we know its not water. Just we are so tired of SEs.



JENN,very happy that your mammogram is good. I know I would of gone crazy if I got that letter also. But great news that you will getting your port out!



Im telling my self every day is getting better. But i have to take it slow. When I see my doc.I want to find out if I can start taking vitamins and if there is any thing that I can take to get my energy back sooner. Its funny I think of all I have lost over the last 8 months and now they will be coming back to me!!!! But if I over do things it will take longer. I am on the othier side now and loving it. It will happen to all of us.



So I hope every one can start putting our lives back were it belongs. Those that cant yet ,you will soon. It is a very long road!

6cats

Can't tell yet if Herceptin is like water or not... Its only been a couple of days since infusion and I'm only 11 days pfc. But seriously folks, I go through 20 weeks of chemo, and now that I'm done... I catch a cold! I'm going to blame it on the fact that my church has quit praying for me!

annie11595 -- I agree, it is so hard to pace yourself... but I try each day to do a little more. Yesterday, it was a little longer nap -- I napped three hours! Does that count for doing more?

Have a good remainder of the weekend ladies!

Jen987

Just had to share what the cashier at Walgreens said: "I love your haircut" I didn't have the heart to tell her why my hair was so short and just said thank you. So if any of you are nervous about going "topless" just do it. You'll feel liberated and less like a cancer patient.

lgkgde13

Hey all,  I am starting chemo over the next few wks and wondered if anyone has results with the brian joseph's lash & brow conditioning gel. The nice woman at the wig shop told me that it saves the eyebrows and lashes through chemo but wanted to check with you ladies before purchasing.  Thank you!

MsPharoah

Lg...I used Brian joseph products and it was ok. I am 8 weeks pfc. My eyebrows are scraggly but I have enough to fill in. I have lost quite a few eyelashes, but not all of them. Not sure if Brian Joseph is the reason I have some scraggly hairs. Maybe some of the ladies who didn't use anything can tell you their experience. Their products are very expensive and you will need more than one to get you through chemo,

Best to you,

Sandra

PamelaKay

Lynn, I was having swelling in my ankles and feet too, probably from the chemo. I found that if i propped up my feet on pillows at night so that they were higher than my heart, the swelling would go down at night, which would reduce the swelling during the day significantly. 

I have to say that I haven't had any SEs from the Herceptin so far. The worst part seemed to be during the infusion. After they give me the Benadryl my feet and legs feel so strange and restless I can hardly sit still. Next time the nurse suggested reducing the amount of the Benadryl.

Still have some annoying neuropathy in my feet: feels like walking on hot sand all the time. MO says most should go away in six months, but anything lasting past two years is permanent. One good thing the chemo did for me is to get rid of all the calluses on my feet. Towards the end of my Taxol treatments, the skin started coming off my feet in clumps. I freaked out until I realized it was just the dead, callused skin flaking off. They may feel bad, but my feet look better than they have in years!

Jen, nice to hear that your hair is coming back and looking good. So far my fuzz looks even worse than the baldness. That letter about the mammogram is seriously flawed. Really, is that the best they can do? Probably written by lawyers. 

I did not use any conditioners on my lashes or brows. They were the last to go, and I have just recently lost the last few straggly brow hairs and only have a few thin lashes left. 

I still fatigue easier than before, but see steady improvement.

I'm looking forward to a trip to Mendocino in October. Hoping everyone has a lovely first week of fall.

6cats

For those that are HER2+, how often do they check your heart (ECHO, etc). I had a 9% drop in EF between beginning of A/C and start of Herceptin (I am now low normal). I started seeing a cardiologist and was ECHO'd again at 6 weeks into the Herceptin (no change), and now go to 12 weeks. I worry about the swelling, and worry about permanent heart issues. Pamela Kay, I'm not sure that your method of sleeping will work for me. I have acid reflux and have to sleep with my head elevated. That would mean I'd sleep in a "V" position... not very helpful in dealing with the mojo issues! But, thank you also for sharing that you had issues that went away. It helps ease my mind.

I too had peeling feet... thought mine was from blistering as my toes and heels hurt really bad before the peeling. I then blamed it on neuropathy... but maybe it was just peeling!

My eyebrows were the last to go... started losing them the third or fourth week of Taxol, lost them completely, didn't do anything special to stop them from shedding. Eyebrows were the last to go, but like PamelaKay still have a few stragglers left.

Just finished my first three days of a diuretic. I lost 5 pounds! Now, I'm back off them for another three days to see what happens. I feel like I'm going from blimp to normal(ish), and maybe back to blimp!

MinusTwo

6cats:  I had an Echo before the start of chemo (taxotere, carboplatin, herceptin & perjeta), an Echo after the first 3 of 6, and an Echo once I'd finished the heavy drugs.  Luckily my Left Ventricle stayed the same so far.  Because Herceptin & Perjeta still have risks, I assume he'll keep testing regularly.

Surgery tomorrow.  Axillary dissection in addition to the tumor & whatever else she finds.  I'm not sure how many levels of lymph nodes she's planning on taking.  My 43 year old son arrived this afternoon to be my caregiver.

6cats

MinusTwo -- prayers... let us know how you are doing once you are able.

anne11595

Good morning everyone. My answer to the eye lashes are they have been falling out and growing back off and on. Its fun trying to put on mascara. My eye brows are the same. Thanks to makeup it doesn't look to bad. But never use any thing on them. Would love to have them back. I know sooner or later they will be.



I had a muga test done before i started A/C and one before taxol and herceptin. Had no changes in them. I am having another one today.plus I am having my first herceptin alone today. The muga test shows more then the echo test. I have had no changes yet and hope I can say that after today. But get tested every 3 months.



Neuropathy has been one I really dont like at all. Feet and finger tips are not good. But if I stay off my feet they dont hurt as much. But we all know how hard that is! So now its a waiting game to see what comes back.

My son came to see me yesterday and was so happy to see my hair is coming back. I can grab it with my finger tips now. Yea! It was funny because my son rubbed my head when he walked by me like I used to when he was little. Its the little things in life that make me smile.



Good luck with your surgery today Minus Two. Hope all goes well and you are home before you know it.



Hugs to all.

PamelaKay

Minus two, hope the surgery went well. Let us know how you are when you get a chance.



Lynn, I figured the peeling was because of loosing a layer of skin under the callouses, but really, I have no clue! I have an Echo every 3 months; the first was in April before I started chemo. Just had my third one last week. No idea of the results; guess they must have been OK or MO would have called.



I have to say, my brows and lashes are starting to grow back, and they look hysterically funny: five o'clock shadow eyebrows and stubby 1/8 inch lashes. I think the nose hairs are returning, but it's hard to tell. Of course, chin hairs are experiencing luxurious growth! No sign of hair below, and my head is covered with black and white fuzz (for some reason, the grey hair came in before the darker hair). All-in-all, I look quite ridiculous at the moment. Good thing I'm not planning on entering any beauty contests.

MinusTwo

Thanks everyone for your good thoughts & prayers. I'm home from 2 nights in the hospital & healing and my son flew back to CA today.

The surgeon took all Level 1 and Level 2 lymph nodes.  She left Level 3 for radiation to deal with  - thank heavens since this is my dominant right arm and I already have some lymphadema on the left side.  What they thought was the largest tumor may turn out to have been a "ball" of "fused" lymph nodes.  Will have to wait for the biopsy reports next week but at least for now she's calling it mets to the lymph nodes and not a chest wall recurrence.  I came home with Tramadol but haven't had enough pain to need them - just quick stabs now & then when I forget and move my arm too high.  My mouth is full of sores but nothing was new except the Keflex antibiotic I had in the IV for 2 days.  Since the sores are similar to my reaction to eating walnuts, I think it's an allergic reaction and I'm taking benedryl.  It doesn't feel like the taxotere related mouth sores I had with the first tx.  I'll call Monday if they're not better.

Anne - yes the neuropathy is just awful.  We can only hope we're not in the 5-10% that turns out permanent.  So frustrating not to be able to even do up my buttons.

Hope everyone has a good weekend.  I plan to sleep the days away.

6cats

OK, April Chemo Group! It is time for a role call! On September 29 it was six months since my lumpectomy... so, despite rads, despite chemo, despite ongoing herceptin, I am technically cancer free! I just celebrated my six month cancer-versary! (That means tomorrow I go for my first follow-up mammogram)

daffyc

Waving "hi" to 6 cats and all our lovely April chemo ladies!!

I'm about 12 weeks PFC and 5.5 weeks post bilateral skin sparing mastectomy and 1 lobe of my thyroid removed. It turns out I did have a small papillary cancer in my thyroid, too. WOW, crazy! Luckily I am able to keep the other lobe for now and we will just do some extra surveillance. It's really not even a blip compared to the breast cancer beast.

I'm healing pretty well from surgery and will do my radiation sim tomorrow. Have another MRI on my liver on Friday (still trying to figure out what is/was going on there...possible met???).

Chemo brain and fatigue seem to be my lasting side effects. Hair is growing, slower in the front and down the middle on top (ughh). I'm still wearing a wig or scarf when out, but usually 'free' at home. Eyebrows are growing in well, but fairly light colored. Eyelashes are thin, but growing. Getting used to the change from my full figured shape to almost flat (will get fitted for prosthesis soon).

I hope you all are enjoying the change of seasons (if they change where you are-ha ha) and are starting to feel better both physically and emotionally.

HUGE HUGS to you all!

indenial

Hi all! I am still around but kind of distancing myself from this site lately, attempting to get on with my life -- certainly easier said than done! I'm 4 months PFC now. Pretty much all my side effects have vanished or at least diminished. I still get tired very early in the evening and still have some pain leftover from my BMX but for the most part I'm feeling pretty good. My family is dealing with a huge battle right now that is an emotional rollercoaster (not to mention all the practical/logistical issues and me trying to parent by myself while I'm still weak & tired from all the cancer treatment!) so I'm a bit frustrated feeling like we are continually trying to keep our heads above water. Hoping one day we will get a break from all the stress & sadness. At least I am (supposedly) cancer-free and more capable of dealing with things than I would've been a few months ago!

I'm also struggling with Pinktober, finding it difficult to have so many constant reminders of cancer and frustrated that there is all this hype around "awareness" and not much effort/funding into finding a cure. It feels like everyone thinks breast cancer is a pretty, happy, fun disease or something. Obviously we know better.

In other news, my hair is about an inch long and as curly as it ever was! Not a fan of this short hairdo but at least it's hair, right?! And I only have 3 ridges left on my nails!

Jen987

Well I'm 4 months PFC and starting to feel "normal" again. Hair is growing in nicely but very curly. Not really liking it too much but it's better than the alternative. Eyelashes and eyebrows have all returned. I finished RADS at the end of August with not too much skin damage. The fatigue was rough though. I've been on Tamoxifen for 5 weeks now and have been able to tolerate it with minimal side effects. I got my port removed Friday. Still a little sore but glad to get rid of it and it's reminder of chemo. Now if I could only lose the 10 lbs. I put on since diagnosis things would be great.

6cats

My 6-Month Mammo went well -- no evidence of any problem. I am just 4 weeks PFC so still am foggy, tired and plain old grumpy... did you know today is National Grouch Day?!?

I don't know what you call it when you're still on Herceptin, but done with chemo. I'll be glad when that finishes next June!

MinusTwo

6Cats - congrats on the clean Mammo - and I think I saw a clean ULS too on another site?

I'm trying to heal from surgery so I can start more rounds of chemo on 10/30 with A/C this time, but picked up an infection at the drain site. One step forward, one step back.

PamelaKay

Good to hear from everybody. I had a left thyroid lobectomy on Monday and am recovering well from that without too much pain. No word yet on the pathology report; they said I should hear something by Friday.

DaffyC, glad to hear you get to keep the other lobe. I really hope that I too can keep the other side.

It's funny about the national grouch day. After my surgery, they kept asking what my pain level was. The worst part of the surgery was having the IV. It hurt going in and didn't stop hurting the whole time it was in. I was mad that they wouldn't use my port. So when they asked for about the 20th time, I told them my pain level was annoying and extremely grumpy due to the pain of the IV and refused to give any other answer. I expect I came across as an unpleasant whiner, but I just didn't care. Finally the nurse offered to take out the IV, but said it was against medical advice. I said just take it out! I was a much happier camper after that.

My hair is also coming back at different rates, the front is definitely sparser and shorter than the top and back.

Herceptin is not bad so far. Echo is normal. Lynn, technically, when you are on Herceptin it's called targeted therapy, but because most people have no clue what that is, I just call it chemo.

6cats

MinusTwo -- yes, clean ULS also... I made them do an ultrasound because of pain in the breast where I had the lumpectomy... all they saw was a seroma which eventually will be absorbed. So sorry to hear about your infection, how frustrating (probably a mild term). FWIW, I had a fairly easy time with A/C -- so praying it will be easy for you too.

daffyc

Chemo brain/fog anyone? If you can remember:)

Seriously, is anyone struggling with this? It's bothering me more than I realized, esp when I'm tired. I mentioned it to my MO a couple months ago, he reassured me it's all normal and should get better in the next year. In the meantime, I guess I will be using a lot of sticky notes to write things down so I don't forget. I do love sticky notes:)

6cats

Yes, yes, yes, Daffyc..... I don't know what is worse, my brain fog, or my distractability! I start something, get distracted and move to something else, remember I should have been doing something, but for the life of me can't remember what, go back to whatever project is most visible and work on it till I get distracted again.

It takes me forever to get anything done!

I think the thing that really bugs me though, is that it seems like my brain moves in slow motion... everything I do takes longer than it used to.

But, honestly I'm not a good judge of normal any more. Last April I had esophageal surgery. In October, I had cellulitis in my elbow (5 days in hospital, then home with twice daily antibiotics). Then in December I had bilateral total knee replacement. I completed my physical therapy in February and the same week was diagnosed with BC... so... what is normal? I'm just sure that the way my brain works now IS NOT normal!

btw, I folded a load of clothes while writing this email and got myself a cup of coffee! But I did remember to come back and finish this!

PamelaKay

There are a few books out there about Chemo brain. I read "Your Brain After Chemo" and found it somewhat illuminating. Basically some have chemo brain, some don't; some get it worse than others; and some recover better than others. There's no solid answers here; they suggested that exercising your brain can help. My weirdness is that I keep reading and hearing things wrong. Makes for some odd moments.

Lynn, seems like we have more parallels: I had an ankle rebuild/Achilles repair last October and had just completed my PT when I found the lump and was diagnosed in January. I've also had three surgeries on my right knee since 2006.

Had my left thyroid lobe removed on the 14th. Preliminary results from the path report are that it is the follicular variant of papillary carcinoma (previous biopsy was indeterminate). No word yet on staging, which will be what really determines if the other half comes out. Unless there is something indicative that this is a "clinically significant" cancer, I'm leaning towards keeping the other half. I'm feeling done with medical care., and another surgery and more treatment just does not appeal, especially when there is such a low mortality with thyroid cancers of this type.

I hope to hear from some of our other April Chemo Sisters, although I am glad to think that many have finished treatment and moved back to a more normal life.

anne11595

So good to hear from you guys! I really missed everyone! Its  crazy how we all started back in April and its October and still going strong.

6 cats ,great news on your 6 months mammogram. Don't know when I should have one. And I do mean one,only one breast left!! Lol I will be done with the herceptin in June also. Had to skip this weeks. Been having a lot of double vision. When a wake up from sleeping mostly but know when I bend over or some time when I'm just sitting. Told the doc and with in a half hour I was in having a MRI on my head. He got the results with in a hour. But it was the longest hour of my life.  But it came back clean. Yea!! 

Daffyc, I started rads last Tuesday. No problems yet. It goes so fast!  I hope you can find out what is going on with your liver.  I think I have some chemo brain left . I thought it would all be gone by now. My last chemo was August 25 th. To hear it might last a year is just crazy!  My eye brows are  just starting to come back . One side is ahead of the other.  Only a few eye lashes. It fun trying to put make-up on.

Endinial, so sorry to hear that you are going thru so much! Its hard enough to be going thru every thing we have to go thru with the damm C word!  But try to stay strong and know we all are thinking of you.

Jen 987, wow you have finished with rads. That is great news! Plus you got your port out double wow. It most feel so good. We all will be there one day soon. I'm with you on the losing weight but mine is 15lbs that I would like to lose.

Minus two,good luck when you start A/C. I found it a lot easier than taxol. Just remember to take any pills that they give you . Sorry about the infection you have. There has been so many foward and step back for most of us and it sucks!! But we get thru them!  I hate the roller coaster ride.

Pamela Kay, I glad that your echo is still good . That the one thing that scares me with the herceptin is what it can do to your heart. Mine was 67 for to test and the last one was 62. But they said that was still good. I dont like that it went diwn 5 points since  I started herceptin. But I will just keep doing what tbey say until it goes to low.

So once again great hearing from every one.  Big hugs to all!!!!

MsPharoah

Checking in ladies.

I finish radiation next week and have done well. Was even able to attend my grandsons 1st birthday party in Chicago last week.

My hair is growing, sort of. I call the color "skunk" and the texture like a hair carpet. Very unattractive and i am in the wig for the forseeable future. I got my chin whisker back, but fortunately it is still blonde. My eyebrows are back and I wore mascara for the first time yesterday.

I started femara late August and I have the femara shuffle. very hard to start walking when I get out of bed, stand from sitting or get out of the car.

I find myself so much more emotional lately. What the hell happened to me this year? I know,I should be happy, but I don't know how to get there yet.

What happened to us? (sigh)

MsP

monkeymom

Hi Ladies!

I go through phases where I let cancer in my life- some days I check this site and other days I just want to pretend I lead a normal life that cancer isn't part of. Same with my support groups- some months I go to the meetings, others I skip and spend the evening with my husband.

I'm almost 3 months PFC and eagerly waiting on more hair. Since I'm continuing on Herceptin until next April, I think the hair growth will be slow:( I had my exchange surgery 2 weeks ago and really like my new "boobs." I got the gummy bear implants- since I nursed 2 kids, these are much perkier than what I had before! I also started Tamoxifin about a month ago. Main SE is hot flashes. Otherwise, I'm back to my busy life as mom of two small children.

I'm glad to to hear everyone is doing well and I hope everyone will continue to update occasionally as we get farther out.