Starting Chemo, November 2013 Group

lisa137

Wallymama, as of yesterday I was 4 weeks PFC, and I can tell you that most of those four weeks were tougher than the entire rest of the chemo experience put together. I have no idea why, but it seemed like THIS time I was NEVER going to bounce back. I had read that the effects of chemo were "cumulative," but it was really like the effects of every treatment I'd had all hit me at once. Just two days ago I was too weak and tired to walk around in my own yard, and I was seriously starting to wonder if I was ever going to get better.

Today I left home at 7:30 in the morning with my husband because he had an appointment for a physical at 8:45, and then we had hours to kill before my 3:40 appointment with Dr. Rockstar. (Both doctors are in Raleigh, which is just over an hour from our house, so we didn't want to come home and go back again.) One of the things we did during all those hours was to go to the mall and just walk around, and although I did have to find a bench and sit down for a bit about every 20 minutes or so (lol) I did just fine. I could NOT have done that two days ago.

I'm betting you will be the same: You'll feel perfectly awful and then just all of a sudden you'll REALLY start getting better. I hope it doesn't take you four weeks to do it like it did me, but just know that it will happen, so TRY not to get too discouraged.  I know (from experience) that hearing "It will get better" is easy to doubt when it's NOT getting better... I doubted it myself... but these other ladies were correct. It really does get better.

QuirkyGirl

Just finished radiation!  After almost a year, I can't believe I'm done.  Wow

lisa137

Congratulations, Quirky! You did it!

QuirkyGirl

Thanks!!  I'm astonished its already over with and was a gazillion times easier on me than chemo.

lisa137

I'm hoping that will be the case for me too, since I'll be starting radiation (IMRT I think) very soon. Do something good for yourself to celebrate. You've EARNED it! 

QuirkyGirl

. That's what my sister said, too.

Hey radiation ladies, what happens with the burned leathery patches after radiation is complete?  Do they peel?  Mine hurts but that's it so far...

Bec65

Congrats, Quirky!  Woo hoo!!!!!!!!!!!!!!!!!!!!

My skin got leathery, then weepy, then dry and peely...all better now and I'm 4 weeks PFR.

inks

Congratulations Quircky! I hope your skin heals up fast.

Amazonwarrior

I had my genetics councelling appointment today and I am going to do the bloodwork ASAP. They said it's going to take about 6-8 weeks to get the results here in Ontario. Also today I finished my 7/25 rads. I am feeling tired already, kind of dizzy and weak with spells of pulsating sensation in my ears, very weird. I had my blood preasure taken by the radiation nurse at the hospital today and it was on the lower normal range.

I am experiencing some redness and tenderness on the treated skin as well as my cording in the axilla came back. 

My leg muscles still feel sore from my last chemo.

As far as hot flashes, I am not getting many of those lately. I feel that in fact I am starting to feel hormonal again. My skin is getting oily and generally feel pre-ovulatory. 

I guess Mother Nature is going to decide on my behalf. And as I heard one lady comment on this a couple of days ago: Mother Nature is going to do what she wants, and she is hormonal!

Other than that: I'm feeling great!

Wally: I am 5 weeks+ PFC and still feel that burned feeling on my tongue from chemo. It seems to really take its time for the SE to clear up. I too wonder if it ever will get better. 

Smmvr: Yay, you are done!

Quirky: Congrats on finishing rads! And yes, treat yourself!

What's the usual progression for the radiated skin?

Jab: Good luck with your surgery? Are you having recon with or without mastectomy?

All: When are we going to have the virtual end of chemo party?

smrlvr

Quirky, congrats on finishing rads!

I am still feeling really tired. I come home from work and lay down.  Lucky it has been raining like crazy or I would feel,guilty for not walking.

I haven't started tamoxifen yet.  RO said to wait until I am healed.

Bec, I am interested to,hear what your doc says about the pain.

My skin is peeling under the arm and raw.  My chest skin is starting to peel and feels leathery.  I am glad to hear from Bec that that gosh away.

QuirkyGirl

amazon, my skin got pink then red and the sun damaged areas on my chest got rashy looking and itchy.  Only around week five did I start to develop peeling raw-ish spots.  The chest burn area also hurts when I lie down as it seems to not like crinkling up when I'm on my side.

Phebe38

hi again: thanks for all your encouragement. Since the end of August it has been a rough year. Jab? When you have your surgery ask them to give you a needle behind your back where the surgery is going to be. When you come out of it it wom't hurt as much, also talk to them about compression sleeve. When I go for long trips I still put that on. It's to prevent lymphotema. I don't believe I spell it right lol. It's to prevent swelling, some even buy expensive ones. I just use the one they prescribe. I also appreciate a soft small pillow underneath my arm where the operation was. I will be thinking of you. Remember to do those exercise they recommend but don't overdo it. 

Phebe38

I really appreciate all of you. I know we're all going to make it. Staying positive and strong is the key. I find that when I don't go for my walks my ache and pains on my legs act out more

lisa137

Phebe, I'm going to say it again: I really do admire how committed you are to staying active. I need to be more like you.

Right now I am wearing a tee shirt with a picture of a sloth on it and it says "Live Slow. Die Whenever." Pretty much sums me up perfectly, lol. Of course it's a parody of the biker shirts that say "Live Fast. Die Young." But I love it. It's my favorite shirt.

I'm gonna try and do better though!

inks

Lisa - I love your  "Live Slow. Die Whenever." tshirt! I did get to the gym twice this week and noticed that when I exercise I don't feel my muscle and joint pain. Today is going to be halfway mark of my rads.

Bec65

jab -- I'll be thinking of you all day today!

lisa137

inks, I got the t shirt at zazzle.com. If you get it on the "value tee" it's less than 20 bucks. That's what I got and it's a perfectly fine tee shirt. I love it so much.

Let me see if a link works: tee shirt

Amazonwarrior

lisa: Love the slogan on your shirt. Lol!

Inks: Yay for midpoint! How are you doing as far as SE? Do you find the curcumin and emu oil helping?

Jab: I am thinking of you today. 

Phebe: You seem a very committed person. 

I too like you have been having leg pains that are slowing me down and on top of that I have been feeling dizzy and that makes things even slower. So much slower that I had to resort to using my umbrella as my walking stick when coming home from the hospital today.

I spoke to my RO today regarding the dizziness and pulsation in my ears/ head, he thinks it's positional hypotension possibly caused by lack of hydration or anemia.

I know what I could do about hydration, but what about anemia?

Bec65

Amazon, I'm anemic without my daily iron supplement.

Lisa, I'm in your t-shirt fan club too!

Yay, inks....home stretch!

I saw my MO today and had a lined sheet full of questions for her.  She's so good....always makes me feel like I'm the only thing she has to do all day.  She said tamoxifen isn't the cause of my joint aches and stiffness, that they're most likely from Taxol and should resolve by August.  She said that even though I don't like to take anything for them, to try taking Aleve for 10 days just to see if it helps.  I might; we'll see.  

I asked again about how insufficient routine lab work seems to be going forward.  Love her -- she agreed but said it's all we've got.  She said tumor marker tests aren't reliable.  Apparently research is being done on reliable tests for circulating tumor cells, but they're years away from being available.  She was really blunt and said that lab tests are all we have and that they either tell us most everything is fine, or that things are terribly bad.  

It seems like all there is to do is accept that, right?  

We also talked about it some more, and we are all on board for the clinical trial for everolimus.  I'm signing the paperwork and getting started with the qualifying tests Monday morning.  Lisa, I know you're given us the recipe a million times, but would you tell me your mouth-sore-preventing potion again?

lisa137

Sure thing, Bec.

It's 4 cups of water, 1 tablespoon of baking soda, and 1 tablespoon of salt.

Put it all in a quart sized - or 1 liter sized - bottle, and keep it in the bathroom along with a little cup you can use (I swiped the one that came with a bottle of Scope) and rinse out after each use. 

Rinse with it every time you go into the bathroom - for ANY reason, and ESPECIALLY right after you eat. In other words, rinse with it LOTS of times per day. The more the better, I think. Sounds like a pain in the butt, but it really worked for me after having had a truly horrible time with mouth sores after chemo #1. 

After the quiet 4 weeks after my final chemo, I feel like I've entered the whirlwind again. I had that appointment with Dr. Rockstar day before yesterday. I have an echocardiogram on Monday (ordered by my RO in preparation for IMRT radiation.)  I had a meeting with my surgeon today to schedule my deportation and I'll be saying good-bye to the port on Tuesday, and radiation should start sometime soon after that. I'm tired and stressed out just thinking about it all, lol, but I guess once I get into the routine of radiation it will all go by pretty fast...and I am definitely looking forward to getting rid of the port. 

Funny thing: My surgeon knows me well enough at this point that he didn't even TRY to convince me to have the port removed under local anesthesia in his office, so I'm going to (as he put it) have a "margarita in my IV" on Tuesday. He knows I'm a wimp.  

audra67

all-

I'm 2 pages behind and too lazy to read it all...I've been following another thread group I was on - on facebook and it's much easier to follow and respond and for me to look at so I've been doing that and not looking here!  So very glad you are getting to facebook and I'm signed up with smrlvr!

Bec- I've been taking Tamoxifen since February and the only new things were' extreme volatile outbursts' , night sweats better and hot flashes slowed down after a month or so and now occasional body aches...but interestingly, I stopped taking it for flying per MO while on a trip and my hot flashes were worse off of it for a few days so now that I've been back x 2 days they are just a couple per night...those are only effects I've had, and the violent anger things have diminished lately too (lucky)

jab- SOOOOOOOOOO happy your  PET scan was normal!  phew!

My update is had a new lump that scared me to death was checked today and fibrous and OK, I also have two more bumps - these are all in line from where port was up to vein in neck...I am seeing a vascular surgeon tomorrow to see what's up with that.

We went to Germany and then Malta last week and it was wonderful!  Hardly thought of this BC thing!  The flight was brutal on each leg and I had to walk every hour per MO since Tamoxifen can cause blood clots which was sortof uncomfortable for other passengers I'm sure...as 10 hour flight and I was up 9 times!!!  Just super fun to get away and be away and maybe take a vacation from my troubles...:)

Getting CT scans on Monday of liver, lungs, abdomen, these are repeat from diagnosis since they had little areas they didn't know what they were.  Praying negative and then I can REALLY move forward...

Excited to talk to you all on facebook!

My hair is about like yours Pat!  growing in a weird fauxhawk look with cowlicks all over!  At least it's hair...and I ditched the wigs after the trip...it was cold there so nice to wear for warmth but here in Texas it's hot already and much comfier au naturale!

Wishing you all great sleep and peace and recovery...

audra67

LOVE having hair...even a little...grow grow grow

inks

Jab - I hope your surgery went well today!

Amazon - that is terrible that you had trouble walking, you poor thing. I get dizzy when I get up too quickly. As far as rads SE I feel something every now and then but I have nothing visible other than slight pink and minor itching. They gave me Radiaplex gel (main ingredients are allantoin and aloe) but I have not been good about using it, I did go crazy with the lotions over the weekend and take the curcumin.

lisa  - I am glad to see that you are getting your appointments lined up for the final stretch.

Audra - sounds like you had a good time on your trip and nice cancer free time. I hope your CT results are great.

QuirkyGirl

11 weeks PFC and still having aching hips, legs and feet. Guess chemo is the gift that keeps on giving. Feeling like an old, old woman this morning.  

Nice hair, Audra!

Thinking of you, Jab!

jab

Hi Ladies,

 Thanks for the good wishes. xoxo to you all. Surgery seemed like a breeze compared to chemo. My DH keeps saying to me 'you did just have a body part removed, you know, and you've got a bag of blood hanging off you so perhaps you should sit'. Anywho, I am now flat chested. I don't think I have seen the rest of my abdomin from this angle since I was 18, and now am acutely aware of my protruding belly. Odd, really.

I went off Tamoxifen for a few days for surgery and the hot flashes have slowed, and the leg pain is much better. In the literature is says that after a few months your body does adjust so I guess I'll need to get back on Tami soon. Yuck!

Audra - Good to hear from you. Your hair looks great too. I'm so glad you had a good trip. All of us need an escape from BC. I said to my DH when this started that I didn't want my world to be about BC, and guess what, it is, but no fault of mine. It is unavoidable, but great  trips are great for distrations.

Wally - I agree with everything Lisa wrote. The last one, when on Tramadol is the worst, and it feels like it will never end. It also took me about 4 weeks PFC before I could say I was making progress, so get comfy and get some good books and crosswords or whatever will distract your mind from the pain and snuggle in. Otherwise it can be an emotional time fighting it and wanting to be better. Know that we are all here for you, so if you need a good rant - go for it!!

Amazon - I think the big 'Last one out of chemo party' should happen when Wally is on the upswing. Say June 1st? How does that sound for everyone. Now, how do you do a virtual party? Amazon, I'm glad your feeling better!!

Lisa - Good to hear you have turned the corner - Love you t-shirt too. It sounds like things are going well with radiation too.

Bec - is that clinical trial in place of Tamoxifen? Sounds interesting. What your hearing from your doctor regarding testing is pretty much what mine said.

Congrats Quirky on the end of Rads!!

Phebes - I'm with you. If I don't move, my muscles and joints hurt much more.

I'm trying to get back to pre cancer levels of exercise, but can't maintain it for more than a few days and then I crash big. It is getting better though, with each time I can last longer. I compare how I am feeling now to three weeks ago and I have come sooooo far. I hope I can maintain this through Rads.

Have a great weekend ladies

JAB

smrlvr

jab you sound in good spirits, so your surgery must have gone well!  

Wally, I hope you are feeling better soon!

Amazon, my MO says it is normal to be anemic from chemo and it takes a few months for it to get back to normal.  I eat prunes and seafood to increase my iron.  The nurse at my insurance company recommended a supplement called floridex that help with iron.  She says it is made from black cherries.  I haven't tried it.

Lisa, I remember being so happy to get my port out.  I am so happy for you. My surgeon doesn't even offer general anesthesia, but if wouldn't want it any way.  I am a chicken too.

Audra, I am glad you had a nice vacation.  I will be praying for good results in your scans.  My hair looks like yours.  Were your tamoxifen induced outbursts like PMS?

Bec, thank you for sharing the information from your RO.  It makes sense that taxol SEs would linger.  

Phebe, you also sound in good spirits

  I need to walk also.  I really do believe it helps.

audra67

jab- you sound great and perky!  I'm glad you are doing so well now so soon after surgery!  woooohooo!!! You will get a vacation before you know it! and BC will NOT be your life! 

quirky- hoping the pains go away soon!  Are you on Tamoxifen?  Could it be that?  I have aches...and on Tamoxifen...

Lisa- the tshirt sounds great to me too!  You are a hoot!

Wally- praying for you to get through this and feel better!  I KNOW it sucks!!!

Phebe, Bec and Amazon- praying for you both as well!

How on earth do you do a virtual anything?  I wonder if us computer challenged people will be able to swing that?  Not sure if I will....help...!

I went to the Tangerine Spa today / Aveda hair place...I bought gel to help me little twigs of hair stand up more to look 'fuller'- am I insane???  But it is growing at weird angles like a faux hawk and I want it to not go that way!  Anyhow also bought some nice smelling oil as my scalp seems dry lately...I LOVE the way their things smell!  I'm sure everyone thought it funny to see me in there with hardly any hair !  But it honestly makes me feel better to be doing 'something' with it!  weird!

Also saw the vascular Dr-  he said I need an ultrasound of vein , he thinks the port injured my vein or I have a blood clot???  He said I am pretty much OK of not having it give me an aneurism since it's been this long...whaaatttt???!!!!!!  I about died...he then said every day longer causes less risk of clot going to my brain but probably not a clot...I don't think he knew how my panicked brain works after this BC, that was so not the speculative kind of things to say to me!!  so supposed to get ultrasound next week.  Nice.  that stupid port has caused me so much trouble!  I knew I didn't want one!   

So I have that and my scans on Monday...hard week it will be, but after that, then I might really be able to move on...(praying)...hoping.....

Happy weekend to you all my sisters in this !

 

smrlvr

I'm back.  Had to take dog out. 

I am feeling really exhausted.  I think it is a combination of rads and work.  Ellen described radiation sleep as being really deep; well I am finally getting into a deep sleep after 22 years. I am looking forward to sleeping a lot this weekend.this is my last weekend before kids come home from college.  I am in pain under my left arm and skin is peeling. I am hoping that heals soon.

Have a great weekend ladies!

lisa137

JAB - that's the first thing I noticed after my BMX -- that my belly is now the first part of me to enter a room. At least, that's how it looks from my viewpoint. My husband says it's not so bad as I think. He's a smart guy. 

Amazonwarrior

I had quite an emotional day yesterday. First I felt too exhausted to even go to my radiation. Then the school secretary were my son goes to school offered to drive me there and stay with me for support.  I took her upon the offer because my husband was on a 3 day school trip with his class. My exhaution made me cry at the drop of a hat or at least whenever somebody tried to talk to me. My RO assessed me and concluded that I needed some bloodwork and a MRI of the brain done due to my dizzy spells and pulsation sensation in my head. He was supposed to call me if there was 'something' in the results. I didn't hear back so I take it as a good sign. I'm going to see him again on Monday, so I'll know more by then.

Jab: How are you feeling after the surgery? Are you going to have any recon? I am totally flat on one side and the other is not much better. After 2.5 years of nursing the remaining breast looks more like a sock. 

Aurda: Good to hear that you had a nice trip. I am glad you have a specialist   who is trying to figure out what's causing the swelling.

Your hair is looking great.

I wish I had some hair to talk about, but right now I am still in the 'reverse male baldness' stage as described earlier by ellen. My hubby called my hair: 'widicuwous' and commented that the 'shine on top of my head really hurts his eyes'! So it's going to take some time for it to cover my whole scalp. 

My hair is coming mostly in white, kind of thicker on the sides, so I do look like an old man. Well I feel like an old woman with all the pain ( like you, quirky), so I might as well look it! (Lol)

Smrlvr: Enjoy your deep sleep! Your body needs it to rejuvenate!

Jab/audra/all: I think that June 1st sounds like a realistic date for people to be up to a party. We can set it up in a way that we can perhaps contribute/ reflect in a fun way. We already had a couple of screams so I'm not sure if that would be the way to go. I think we need to brainstorm for a bit on the idea. 

Bec/smlvr: How much iron do you take a da?

Wally: I hope that you soon will turn a corner in how you feel.

Lisa: The 'margarita in your IV' sounds like a good idea! Lol I am happy to hear that you are getting your port out. For me it was a day of celebration!