Is There A September 2011 Chemo Group?

maggie, happy to hear the physical therapy is going good. HUGS to you,too.

Kimberly  - sorry to hear about your neutrophil count messing up your Thanksgiving plans.   I am thinking about you today (so you are not alone).  This is almost over for you just keep repeating it in your head.

CCJJ - I hear you about the recurrance forum (like we don't have enough to worry about already).  Every freaking skin blemish I think is a skin met, every pain I think is related to the cancer coming back.  Someone wrote a really good post on Thanksgiving 2 years ago on the Stage 3 board.  I cried when I read it but I felt pretty good after - it was very encouraging to me.

SPCMadi - I am 4 days out from my first taxotere (Monday) and feeling pretty crappy.  I hope you are starting to feel better now.  You had mentioned that you had gone for a genetic testing consult.  Did they tell you how long the turnaround was for the test in Ontario.  In Manitoba it is 18 months!  I think I may be sending my samples south of the border (apparently a 4 to 8 week turnaround).

Glad your PT is working out so well for you Maggie!  Sorry you feel so crappy for your Thanksgiving Belle - maybe SE will start to let up today.  

Everyone have as good a weekend as they can under the circumstances. Take Care

Karen

Kayrem- Sorry to hear you are feeling so poorly. I am now on Day 6 finally able to get up and moving. Still tired after minimal exertion. Still experiencing diarrhea so I am staying close to home. I have no taste buds tongue is white  think I may have Thrush I am waiting for the Doc to call back.

I had to postpone my initial genetic appointment due to scheduling issues with the chemo. I am now scheduled for March. Unfortunately they only do it in Hamilton and live in the Niagara Region. They scheduled me for a day 2 post treatment and the 45 min drive was going to be out of the question.The right hand does not talk to the left under any circumstances here.  Long wait times for initial they said they only have one counsellor for the unit. Apparently it can take up to a year for the full results. South of the border may be the way to go.

Happy Thanksgiving everyone! I have felt terrible for the past 3 weeks I called and they agreed to move my chemo back until after Thanksgiving. I actually felt great today all things considered and wore my wig for the second time. Felt great like I was out on a weekend pass for good behavior. It's terrible to start feeling normal and be counting the hours until my free pass is up and it is back to chemoville. Anyway I used my get out of jail free card today and had a great time with family and friends.



Belle: I hope you are feeling better today and you were able to enjoy Thanksgiving.



Babs: I am sorry for what you are going through with the SEs. Also, I just lost my son and today had some difficult moments I know even later on it will still be hard my heart is with you and I understand the double pain physically and emotionally.



CJRT: isn't it amazing how just a small break of feeling human again can be such a spirit lifter.



Maggie, Karen & ccjj: You captured my feelings exactly. I am having a few more pity parties these days. My husband tried to say as I was looking in the mirror in tears, " you look beauti..." I whipped around with fire sparking from my eyes and drool running "do not tell me that this cue ball bloated head covered with blotches is beautiful. "okay then" and he walks out. Geez could you have at least put in a little more effort, like you have nice teeth or something.

Everyone says wow you have a beautiful head and I go yeah God has a sense of humor he kept my best feature hidden under a head of hair all this time. Invariably they always add "I wouldn't look good because I have a bumpy head" Is that supposed to make me feel better?



Well I hope everyone gets to feeling better. This has been a hell of a ride and I can't wait for it to end so we can all get off and get our lives back. I never did like roller coasters they always made me sick.

Big Hugs to all my fellow riders!!!



Kimberly: I am so sorry you had to spend Thanksgiving alone but glad you were feeling well. Packers winning is always a good thing!

Rae--people say that to me too!  Hate it.  Another favorite line I hear is you have never looked better--great apparantly I looked like s**t before.  I now look at them and say "wow I should have gotten cancer sooner"  and walk away...why do people think they can just say anything to you while staring at your Pillow boobs??

I really am so sorry to all of you with these horrible SE's.  Physically I am doing good but it is emotionally that I cannot seem to get a grip.  

Maggie

So today is day 7. Considerable less body aches today but I feel generally yucky. Very technical term yucky but it is the best I can describe how I a feeling. I had a horrible nights sleep, tossed and turned, hot and cold flashes. My mouth continues to feel like sandpaper and is white. Onc. prescribe a script for a mouthwash which I am starting today hopefully it will help. I am thinking I need to force myself out of the house for an couple hours to see if the rest of the world still exists maybe it will shock my body into turning it around. I do however want avoid the Black Friday shopping sprees happening even here in Canada. 

Nurse came today to change my pic dressing and we went through the supply box to see what is left. Just enough for 3 more which puts a spring in my step. It is concrete evidence the light is coming. 

 Kayrem-I too am going to haul out the decorations this weekend. I am ready for a little festive cheer around the house. I want to get out my baking stuff and make cookies, even if I can't taste them I can smell them. I am trying to make Christmas as normal as possible for my kids. So hard when you have no energy or motivation. 

Happy Shopping to those brave enough.

Sarah

hi shelley, whine away! The LE thing is freaking me out too. I'm pretty sure i have truncal LE because my dog ear (anyone else have those lovely appendages?) on that side is larger today. I had alot of salty food yesterday and vacuumed/mopped...then my arm and dog ear just felt sort of heavier. I am going to deal with it by ignoring it! Stupid I know but I really don't want confirmation if I do have LE:( Good luck with the fingernails!

Hey ladies..just jumping in to ask if anyone has experienced hives after chemo during this lovely journey? I woke up this morning (day 8 after 4th and last chemo) with just a couple hives but my earlobes swollen to like 3x their size! Then a few hours later, I am getting more and mostly on my right side...which is weird. Now right hand and wrist are swollen...wth?  I took allegra this morning, but didn't call the doctor yet....any ideas?

Hello All

Jersey I agree with Kimberly, benadryl and call. 

I will say Thanksgiving was really sad for me.  I had everything arranged food wise.  Neighbor brought a turkey and gravy.  Costco stuffing and potatoes.... My 16yo son, 22yo son and a few of his friends, and my dear hubbie.  I was in bed almost entire day but decided I was going to join them at the table.  My son served me the most sad looking plate (I asked for very little) and we said a thanksgiving blessing.  I barely ate one bite and had some ginger ail.  I so wanted to enjoy dinner with family.  I lasted a little longer and then went to bed.  I left the door open and enjoyed listening to everyone laugh and play catch-phrase.  So mad not to be part of holiday.  I feel like a true invalid and I hate it!

Today I still feel really nauseous and achie.  Took a variety of pharmaceuticals and thought I would take a bath.  Oh my god, I saw my skin hanging and wrinkled on my legs and arms.  Added to other new oddities of my body I felt horrible.  I not only feel like s**t but look like it too.  Well, 4th treatment given and 2 more arrggg, not very reassuring right now.  That is probably enough for now.  I hope some of you actually tasted Thanksgiving dinner and had an enjoyable  time with your friends and families

Sara ♥♥♥

About nails, did someone have problems?  I never iced them.  I expected them to stop growing, thinking they were the same as hair.  I sometimes saw some weird growth near the cuticle line, some weird looking growth and thought....oh well,  Now the nail thing is going to happen, like the hair thing.  I moisturized them with hand lotion and still expected to lose them.  The nails are still growing like crazy.  The parts I thought I would lose definitely responded to just being moisturized.  Be a little careful with pressure on them.  Keep them moisturized.  Avoid hot water and harsh chemicals.  Good luck.  When lurking around, Lago had the worst SE with nails.  Ask her if she has any advice about what to do or what to avoid.  It's not a typical side effect but when it happens it's a bitch.

Belle - Ask your MO for pain killer if you have none in your arsenal for bone pain.  The stupidest mistake I made during treatment was to endure the bone and muscle pain like a masochist.  It left me a mental emotional mess by day 6, every freaking round of chemo.  I don't know if it was the chemo or Neulasta, but something just broke me with the SE.  I had leftover meds from surgery.  I should have used them earlier.  Use them if you have them.  If you don't have them, ask for them.  You should not have to hurt that much....I was an idiot and resisted using pain meds but that was so stupid because it just broke me down too much.  If it hurts... ask for pain meds.  This does not make you a wimp, just acknowledges the pain of the treatment.

Thanks Kimberly--realistically I know that but the emotional side of me has taken over right now.......

On another note...does any one have trouble with their port?  In trouble I mean pain that shoots out from the area of the port in the chest...like stabbing electrical shock type pain.  Last night when trying to fall asleep I had the worst one yet.  It brought tears to my eyes.  I asked the Doc last round about it and she says that it must be sitting on a nerve or touching a nerve somewhere and to just wait it out--3 left--and then they will get it out of there.  She said there is no guarantee that if the replaced it that the new one would not be touching a nerve so not worth an additional surgery.  Just curious if anyone else experiences this or am I just "special"

Maggie

mags, I had the same thing with my port and Onc told me exacty what yours told you. Mine isn't constant or anything, I think it just skooches around a little sometimes and ends up resting on a nerve...

Good Morning sort of,

Yesterday I woke up feeling good had plans to head to a movie with m kids to See Happy Feet 2. Was able to get all ready then BAM diarrhea and cramps return and I start to feel like crap. I was so determined to ignore my cancer yesterday that I took two Imodium and a gravol and went to the show. I got through the movie although skipped out on all the snacks and really felt better just for getting out. FYI- Hapy Feet Two is a renter.

Last night we finally hauled out the tree and got it out. We always make a big deal abut this brewing hot chocolate and playing Christmas Carols. I am an avid scrapbook er and always snap lots of photos of my kids opening all the Hallmark collectible ornaments and pushing all the buttons, and remembering who gave them. As I sat on the couch watching I was on the verge of tears even though it should have been a fun night. A very common thing these days I am so emotional. I feel like I have split personality disorder I go from okay to miserable to sad all in the matter of moments. My poor husband has to take to brunt of my craziness. I am not sure if it is because of just being so tired of being sick, or possibly a hormone thing as my cycle has stopped. I am defiantly feeling like Captain Cranky Pants and I am have a hard time getting past it.

I am definatly in the camp of be so tired of being sick. I just want to wake up and feel normal, enjoy the taste of whatever I want to eat, not have any hot or cold flashes, not have to struggle into a waterproof sleeve to shower, not have to slather moisturizer on 6 times a day to not feel dry, not have to blow my nose 100 times a day, not have to feel achy and sore enough to have to take pain meds. I want my hair back and to want to look in the mirror in the morning and not feel gross. I want to be able to eat and not get diarrhea. I WANT THIS TO BE OVER!!!!! 

So there it ismy little vent session. I am sick of being sick and I feel better for writing it down. That being said I will spend today finishing up the decorations. Cleaning up for the new week and getting the kids all set for school this week. Because the rest of the world is marching on around me and thank god because the faster it marches on the closer I am to the end of this nightmare. 

Sorry for the rant. 

Hope you are all in a better mood than me.

Sarah AKA Captain Cranky Pants

Evening ladies.  Some great venting. I agree with Debbie, it's much easier to have your therapy group on-line.  Don't have to dress for it, don't have to drive cross town, and it's available when you need it, not on third Tuesday of the month at 7:00.

Well, I am now in a similar spot to Jersey.  I have run out of my vacation hours and although I can still take off with FMLA, it is now going to be out of pocket for any time off.  Well, actually not because I do accrue each period, so there will be a little there, but the vacation hours are zippo right now.  Luckily the checking account is actually a little healthier than usual right now because I haven't felt up to shopping in, hmmmn, 5 months.  Besides the grocery store, I went to a sports store to get a pedometer, to the pool chemical store, and to the second hand store for some colorful t-shirts to make t-shirt turbans, oh and of course the pharmacy, way too often for this and that. Even grocery shopping was sometimes a white-knuckle experience.  Thank god for sturdy carts you can lean on when your back and legs are weak.  I can remember a couple of times that by the time I got to check-out, I know I had broken out in a sweat from discomfort.

The following is an excerpt from a message from LuvRVing that I received in case any of you are interested.  I wrote to her quite a while ago, asking what she took to ward off neuropathy, actual doses.  I didn't use it during chemo, was always afraid of anything interfering with chemo, but since I do have neuropathy in toes now, I am considering giving these things a try.  Gosh, I made it until the last round and thought I might escape that one.  Sigh.

So per LuvRVing, the below supplements are useful for neuropathy, or at least what she hoped would be useful.  I did cross reference it at the time and saw that it was being studied at a major university for just that purpose, avoiding neuropathy in chemo patients.

I asked for specific doses, because I didn't know.  So per her report, she said......

"I am taking 3 capsules of ALC each day - 2 in the morning and 1 at night.  It's a combo supplement that also has Alpha Lipoic Acid.  I am also diabetic and ALA helps there. 

I didn't start taking this supplement until I started Taxol...I managed to get through A/C without it. So far, I don't think I have chemo brain (except for the time I forgot to remove the plastic wrapper from the dishwasher tab...lol).  If your "T" is Taxotere, be sure to ice your fingernails and toenails. You might check out a couple of threads that talk about "Taxoterrible" under the Chemo forum.

I am also taking L-Glutamine (500 mg or whatever unit) and Vitamin B-6."

Hmmn, about getting depressed looking in the mirror.  Oh yes.  Don't we all know that problem?  It reminds me of when I was in my early 20s and had back surgery.  Afterward, I could walk again but was very sensitive to any bumps or jangling.  No motorcycle, cars without good shocks, and running, which was just too high impact.  When I told this to the surgeon he looked at me like I was an idiot and said "so don't run."  It was more complicated than that because I had put in 3 years of criminal justice in college at that point to be a cop and I needed to run to pass any physical, so it was a little more disappointing than he grasped....

I try to use the same common sense with the mirror, kind of like ....so why are you looking in the mirror if it makes you feel worse?  If it makes me feel bad, I really try to minimize it.  I know I could fall into staring at my bald head in the mirror every hour to check if any hair is coming in like an anorexic jumping on the scale to check if they are 1 ounce up or down.

And for you ladies experiencing chemopause and hormone transition zone...I haven't felt it with chemo because I already had TAH-BSO, but I know it because that is pretty much the same, fast withdrawal from your normal hormones.  However, the good point is I always had such mood changes from PMS, every month and maybe every 3 months a little extra worse, it was a huge relief to get rid of that rollercoaster once my body got through the initial shock, so there is an upside if it throws you into permanent menopause if you are at that age that you were close anyway.

For my vent, the leg edema has been horrible for me during this and it has not subsided all that much yet.  The legs feel like lead.  My heart rate runs 100s to 110s at rest. I look at my feet and calves and think I should be paddling like a duck, not walking.  The only thing that really relieves it is laying down with legs highly elevated, but after a few hours down in normal life and position, gravity just brings the same problem back.  One night a few weeks ago I dreamt I was a prostitute.  When I woke up, I thought no wonder with my legs up in the air this often for 3 months!!  I had a salt and drinking binge on Tuesday.  A few drinks and I forgot about the salt and had a cheddarwurst (sodium) binge and it took me about....6 days to get the swelling down.  For those of you following this thread all along, you have to be laughing at Kimberly and her sausage problem, the liver sausage, the cheddarwurst.  Poor idiot woman.