January 2013 chemo group

LeeA

hope49, you described the leg heaviness so well that I copied your post and sent it to my husband.  I was trying to describe it to him earlier this evening.  

I'm really looking forward to be able to walk my 30 minutes a day without that burning/heavy feeling.  

ablydec

I've been off for awhile, but wanted to connect with all of you again.  I finished #5 a few days ago.  As you've all said, the leg pain is one challenge.  But what's driving me most crazy lately is the problems with taste.  It's not that I don't have an appetite.  I'm plenty hungry. It's that everything tastes awful.  So I'm asking you as experts...

WHAT CAN I EAT?  that won't taste like metal or gross to me.  Any ideas???

SeattleMama

Hiya ablydec - from what I've heard and experienced :
1 - make sure to use plastic utensils...I don't use the disposable plastic sets, but I had some hard plastic left overs from daughter.  "THEY" say if you don't use metal utensils, then that might help with metal mouth taste.  I never really got metal mouth, I am more just TASTE NOTHING and severely sore mouth.

2- Get some organic powdered ginger - sprinkle on EVERYTHING you can't taste.  It supposedly helps reach some particular buds on the tongue that heighten taste.  It worked for me sometimes.  I also have seen an uptake in my salt, but I have low, steady blood pressure so, I'm ok with a little extra when the buds are gone.

3- force feed?!  Yep, been there - done it.  I cannot tell you how many meals I sat down and had to take a poll around the table.  "Do you taste this? Does it taste good? Is it salty enough?  Is it sweet?"  To which I would load up my spoon or fork and shovel it in if my mouth could handle it.

Now that I am having a bit better time with the eating/tasting, I am juicing A LOT.  And LOVE IT. I wish I did it when my mouth was so bad and when my taste buds were out of commission for WEEKS at a time. 

ablydec

Thanks so much.  I'll give it a try.    I sure will be happy to be done with this scene.  Giving myself three weeks to "recover" from the last round, I count myself as having six more weeks to go.  I know I'll still have to do Herceptin, but I'm hoping that won't be as hard.

Zorina

Yeah Shannon!  I cannot bring myself to plan any major trips yet but have a few smaller ones.  Part of my issue the lack of vacation time I have, but I just cannot bring myself to plan anything major either.  

I was in Quebec City last fall--felt like I was in Europe. Well, at least it looked like pictures of Europe.  I haven't been to Europe yet. I want to go back and spend more time there someday.

cancernoway

Bryona - I cracked up laughing and you are right, it will pay for pissing me off, rat bastard. 

I have a question, for the last two days I have an intermittent "twingy" pain in my affected breast.  I've had two spots that have had lumps since my surgery.  The MO told me that they weren't concerned because all of the previous scans didn't show anything in those spots and they felt it was from the surgery and it would go away.  Well those lumps are still there and the pain is in one of those spots.  It's not on an incision line so it hasn't been numb but it is on the side where they took the lymph node out (which was clear).  Has anyone had anything like this?  It's making me nervous, but then I think, hells bells I'm doing all this freakin' chemo and they got clear margins when they removed my tumor, but .........  It's freaking me out a little bit.  Thanks guys for any input.

Anonymous

Cancernoway~~Is the twingy pain almost like little electric shocks? It may be the nerves regenerating. I had that several weeks after surgery. They weren't long lasting pains. Just quick & sharp.



Paula

SeattleMama

I'm with Soteria205, even though it wasn't in the area of the incision, if it was near it, regeneration causes some weird pains....and travels all around.
Did you have pain at your initial diagnosis?   My initial tumor and new crazy mass was painFUL! Unlike what they say "bc usually doesn't hurt" Yea, right.

LeeA

SeattleMama, do you have a recent new mass?  

cancernoway, is it possible that you have seromas?  I just found out that I apparently have two in my axilla region.  They dug into that area and removed one lymph node during my surgery back in November.  

SeattleMama

LeeA (Blondie oh, no; my 'crazy, new' one came to the party while I was doing neoadjuvent chemo.  Sorry if that was confusing. :P

Bryona

Lee, I thought of your m-m-m-my seromas when I saw cancernoway's post, too. Do yours hurt at all?



SeattleMama, hope the Navybeans treats you well tomorrow! (Crazy English teacher just stared at that statement for at least 30 seconds trying to decide whether to treat "Navybeans" as a singular or a plural. Gah!)

SeattleMama

Bryona ROFL  - yea, I hope "they", "it" is handleable :P

duckiedee

When I went back for a diagnostic mammogram recently on lefty (my lumpectomy side), I saw the breast surgeon. They looked at the films and did an ultrasound and told me I had a seroma there. They said I could come back and they could drain it if it is bothering me. But it really hasn't. However, I notice now that the area feels harder and less mobile than the rest of my breast. I finished chemo on April 1st, and on MOnday I see the radiation oncologist to do our "simulation" and plan my radiation treatment.

Now I'm starting to wonder if the seroma will cause problems with radiation. So maybe I should have it drained? The surgeon said that eventually my body will reabsorb the fluid. But good grief, I've had this since my surgery in October! How long can it take? I didn't think to question how it might affect radiation, and I can ask the RO on Monday. But does anybody out there know anything about this? Will combining radiation with a seroma make my breast feel even harder? I know that a side effect of radiation can be a loss of elasticity in that area. Just curious...

LeeA

Bryona, nope, no pain and the radiation oncologist could not palpate it nor can the lymphedema massage therapist.

SeattleMama, was the second mass benign (I hope!!!)? 

duckiedee, the radiation oncologist said that, if my tissue expander is actually leaking, it should be removed prior to radiation (if I end up having radiation, that is).  He said the changes in fluid level could mess up the radiation points.  I would check with your plastic surgeon about the seroma as it's my understanding that they can go down in size (or fluctuate in size) post-surgery. 

MandyNJ

Hi everyone. I hesitate to post this..you're all gonna think I'm a hot mess. But here goes anyway!



So my first DD Taxol went off swimmingly on Monday. I felt so damn good on tuesday that I was skipping and giggling. But at the same time, my hands started getting pretty funny. Figured it was neuropathy even though it was early. Took my vitamins and glutamine. Drank my tonic. By yesterday, I couldn't use my hands at all. They were swollen and burned. My nails were lifting. My skin looked burned..fingers so swollen you couldn't see my fingerprints. It was terrible! I couldn't pee alone because I couldn't lower my pants! Forget changing a diaper! Oh and my face around my mouth was numb.



So! Delayed allergic reaction to taxol! No more taxol for me. I'll be going to abraxane for my last 3. My MO says I'm her side effect girl. And it's true - I always get the weird or rare side effects. I must be so delicate haha



So I'm feeling better and can now text and pee with less pain. Sitting with ice packs on my hands almost nonstop. Can't touch anything hot/warm. and I have all the nerve and muscle pain from taxol.



BUT...I'll still take this over my A/C nausea any day of the week and twice on Sunday.

LeeA

Mandy, how scary!  I'm so happy to hear the side effects are receding.  

Skigirl72

Mandy- HOLY CRAP! So sorry this has been a difficult ride for you. I am totally nuts on Tuesday from the steroids. I cleaned EVERYTHING. My cats even got a double brushing. I had to stop or they would have been bald too. I don't know much about abraxane but I hope that is the one that works!! Keep going and keep fighting!!

SherylB

Mandy,

Bless your heart all these crappy reactions must make you fearful everytime you get a new medicine. I am lucky in that I don't seem to react to anything. You could probably give my cyanide and I would laugh. On the flip side of that though it takes so much more of anything to work on me. I told my MO she should double my doses but she just laughed like I was crazy. I even take 800-1200 mg of ibuprofen to hope for any relief, (being a nurse I always self-medicate). You can actually take up to 3200 mg of ibuprofen daily but not recommended. I don't even have to have food on my stomach. Oh well enough about my resistance to everything.

When your hands can tolerate warmth, try it because warmth increases circulation and will decrease the swelling while the cold kills the pain it decreases circulation. One way to get gentle warmth is to wash dishes instead of using dishwasher. I sure hope you are better immediately, enough already with the SEs.

Hugs, Sheryl

jocanuck1951

Mandy, I had an anafalactic reaction to taxol, tongue, throat closing etc.. All the staff showed up to watch....glad you didn't go into respiratory failure! Abraxine is my fav poison!

MandyNJ

Aw thanks for the support! I'm doing ok. I know the pain will go away so I'm tolerating it fine, just a few moans when no one can hear me. I wasn't kidding when I said I'd take pain over nausea!



Joanne- you're not kidding! How terrible you went through that. My ear got very red and hot during infusion but they couldn't determine what that was about but that was the only oddity during infusion.



I'm blessed to still be fighting after all my quirky problems. Having you guys to understand is priceless.

SeattleMama

Oh Mandy, I am so sorry you are having to go through all this on top of everything else that we endure. JoCanuck, our scenarios sound similiar, though mine was with Taxotere.  I became the show-and-tell of the Oncology Floor.  LeeA, new mass was not benign but its GONE.

LeeA

SeattleMama, thank God for that and this: "1/14/13 NED"!!

SeattleMama

Yes, thank God - I few months back I remember reading on another thread about "dancing with Ned". I was like, who is this guy and why does everyone want to dance with him?

Lee, how is your halo-wig with your weather?  Does it help in warmer climates?

LeeA

SeattleMama, I alternate between the halo wig under a variety of different hats/caps, a short wig that looks like it was lifted straight off the head of Nancy Grade and a long wig that's closest to the color my (highlighted) real hair was prior to diagnosis.

It hasn't been that hot here yet so I don't know how things will go as the weeks/months progress.

What are you doing for head coverage?  I'm always looking for new ideas! 

SeattleMama

Navybeans: in and done......Oncologist said my wbc was actually higher than last time.  Seems the affects from Taxol and Adria (1 month out) on my blood production have finished up.

LeeA, oh, I thought you had 70s/80s already?
Me: I have some gorgeous, high end scarves that my friends gave me (and nowhere to wear them), bandanas, I got one freebie wig (excellent quality, donated, just don't use it much).  I had some cute knit caps that my gmother made me, but its almost too warm for those now.  I guess my fav is a cotton, triangular-cut bandana.  Its cushioned on the forehead, not an obnoxious print (kind of spring-y) and large enough that it covers. Not too hot, not too cold.
I don't wear anything at home.  Almost always have to rip off whatever I do have on at the Dr's, due to hot flash.  I ask my daughter to remind me before I answer the door or go outside, to put something on my head. 

She and I forgot once, when the FedEx man came by.  She and I threw open the door, started a conversation about the delivery, was examining his MULTIPLE facial piercings and sent him on his way.  As I closed the door, WOOPS, my bare, bald head in all its glory.  To which I giggled, FedEx man probably thought I was just cool like that. :P

Nicole503

Mandy You amaze me with your ability to roll with the unexpected and unfortunate.  You are one of the most Capital R Resilient women I know!!!  Hope your allergic reaction subsides soon and you have smooth sailing from here.  If anyone deserves some smooth seas, it's you!

cancernoway

The pains don't last long and are sharp.  I did have pain with my initial diagnosis and what was weird is I woke up in the middle of the night and had terrible pain.  I thought it was heartburn and it was the week before my diagnosis.  I took some Tums and went back to bed but that pain lasted a few hours before it subsided.  I had occasional pains here and there and in hindsight I know that it was related to my tumor, but at the time, I just thought I had heartburn all the time.  My breasts are lumpy bumpy naturally and very dense so I didn't find my tumor on my own.  It was found on my annual Mammogram.  Nothing ever felt different to me and my tumor was low in my breast and on the inside.  My surgeon asked me if I did monthly exams and I said I did, but obviously I wasn't very good at it, lol.  I don't know if they are seroma's or not or if it is nerves coming back to life.  I'm hoping that it is something like that and not the alternative.  I go back to my MO on the 22nd and I'm going to bring it up again and see what they say.  I really don't like being paranoid about any pain that I have.  It's beyond irritating.  Thanks for your input, I really appreciate it!

Mandy - Girl, you have been through so much and you just keep smiling.  You are an inspiration to us all.  I think you are amazing!

Lee - I would love to have the weather that you have had so far.  We had a teaser of good weather this week and now it is cold again.  Good grief.  I guess it will get here when it gets here. 

SeattleMama - You are a Rockstar and your attitude is the best! 

Everyone have a great weekend.  I wish you all the best, always.

Skigirl72

Taxol#3 coming up this monday... I am so very sore today. I have general aches and pains in my legs, hips, lower back and arms. UGH. I took 2 advil and I hope it subsides. Heading into the hot shower to loosen up. I hope this is not a trend...

martha323

I've tried my best to get caught up on posts this morning. Thanks to everyone for sharing various symptoms, information, and experiences.

Congrats to Mandy for finishing what sounds like a difficult AC experience. So happy it's over for you  and I hope that you find Taxol less debilitating. A few others are coming to the end of chemo soon, if I remember .. best wishes to all!

Bryona- I've had Taxol #3/12 this week and I find the same thing - fatigue on days 3 and 4. Loved your treat tale … you are a smarty, all right - inspite of your chocolate jones!

I must have had a virus after #2 because I had a wicked headache and a low grade fever for 3 or 4 days, Although now I wonder if the relentless headache could have been related to photosensitivity from Taxol. I wear sunglasses outside, but the large room that we added on several years ago doubles as a sitting area as well as my studio. I love the amount of light in the room (no curtains on the many large windows), but last Sunday I felt like a vampire in distress and tacked up a large sheet over the largest window and immediately felt a difference. I started noticing subtle vision changes while I was on AC .. MO said to wait for new glasses until after chemo …ok, that could cause headaches as well!

Shannon - great that you start your summer vacation schedule right when finishing chemo - you're almost there! Beautiful photo -

Skigirl - Magic Mineral Broth - Thanks for the link. Are you on DD Taxol or weekly? Hope you feel less sore by tomorrow!

Great big wishes for a peaceful weekend, Bellas, - Hugs and always prayers, Martha

Bryona

Mandy, you do have something like magical SE powers. I'm sure that's the superpower you alwasy hoped for, right? Big hugs to you, sweet muffin! And I'm not sending you any good wishes for Abraxane, but that's not because I don't have them; I'm just starting to think my good wishes to you are a jinx...

Skigirl, how long have you been sore? Did it just start today? I hope the advil and shower help.

SeattleMama, I laughed at your FedEx man story, but it also made me think we need to head to the hipster neighborhoods; it would be way easier to deal with the baldness where everyone is too cool to give me a second look. I think I'll go hang out on Capitol Hill this summer...

This is what people hanging out on Capitol Hill look like. Who's gonna bother staring at my bald self?