Starting Chemo, November 2013 Group

Brioche78

I don't see a rash but my eyes have been so itchy for the past few days and I haven't even started taxotere. I have a magic bullet and I use it every morning for breakfast. a nice one is : 1 banana a handful of raspberry ( frozen) same amount of blueberry half of almond milk half of orange juice and spoonful if psyllium. Starting taxotere tomorrow... I don't feel like it but I know I have to. I'm so nervous. I asked my family dr for something to help me sleep and she said to ask my MO so I called the nurse at the cancer Center, she said my family dr is supposed to do that. I'm frustrated I just want to sleep, I'm tired of the "of with the covers its so warm and then on with the covers I'm freezing"  I hope these hot flashes go away after a while, menopause is not fun at 35... Sorry just needed to vent but try the smoothie its really good and the only time I didn't have it I got mouth sore so I think I might be helping for that.

Wishing everybody a se free day.

Palameda

Chemo, How do I experience you?

Let me count the ways. Tingles in my fingers,

Heart beats that thunder, dizzy that lingers.

My gut wrenches with pain, moves slow or fast

Senokot or Imodium the two

Ends of the pendulum I find I'm on.

Far too often I sadly see the dawn

After I toss sleeplessly, and feel flu-

Like exhaustion. Muscles cramp

Without warning. My mood hovers near blue.

My ankles have swollen, and look so fat

They bulge above my sorry, painful feet.

But my hair, that I miss. With wig or hat

I can get by-- to grow it back--how sweet! 

(Apologies to Elizabeth Barrett Browning)

Now that I have "finished" chemo (my body sure isn't finished dealing with it), I find myself impatient with all the SE. I have to keep reminding myself that I'm not quite 2 weeks out from my last tx. During the thing I was resigned and stolid. Now I keep expecting to feel good, to have it all over. Psychologically I'm finding this period quite difficult. I know the effects are cumulative, that this cycle the SE are likely to be more severe and last longer, but that's on an intellectual basis. Emotionally I feel like I've been patient enough! I have been sick now for 6 months, and do so want to feel good again! To use a gross analogy, it's like when you're on a walk and need a bathroom. It's the last 1/2 block that is difficult, whether you have to go a block or a mile to get to that last stretch. All I have left is one lousy month of rads and I'll be through, but I want it over today!

Quirky, my rash is on my arm, the back of my head, and on my forehead. Fortunately, only the bit on my arm itches.

I'm starting to look at hair regrowth odysseys posted on the net. I'm steeling myself for the loss of my brows and lashes in March. It looks like round about 4-1/2 months to 5 you can pass for perhaps having chosen a butch haircut, instead of being a cancer patient. I envy those of you who have the bravery to appear in public bare-headed. I just don't think I can handle people's pity. So often when they "see" cancer people jump to the conclusion that we are walking dead. Ugh! I guess I'm just so private that I can't stand the idea of, in effect, sharing my situation with the world.

By the way, thanks so much to all of you. During this really really hard time, having this outlet to complain, compare miseries, get pep talks, and mostly feel "not alone," has meant so very much to me. Without our community I would have spent far too much time curled up in a miserable, confused and unhappy lonely ball on my couch, crying my taxotere tears. I have to repeatedly tell my DH that I'm not crying because I'm sad or emotional. Poor guy.

Brioche78

Pat, 

Did the tingle in your finger started on the first treatment or after a few? Is there a way to prevent neuropathy?i finished 3 round of FEC ( I had a rough time with it) now I hope taxotere is not has bad. Thanks for sharing you se. It's better to know what to expect.

jab

Great 'Ode to Chemo' Pat. Elizabeth Barrett Browning would approve,  I'm sure.

When I use to run long distance, I would  play some mind games that really help me get to the finish line and keep pace, and peace. One that I'm using right now, is the 'reward' game, meaning what amazing thing am I going to do to celebrate this hell coming to an end. It helps me keep focused on the end and more positive stuff. So far, my reward consists of eating amazing Italian food, some great scenic hiking and some amazing sex (sorry but had to include that - Not feeling the vibe these days, if you know what I mean, poooor hubby).

What are others doing to 'reward' themselves for succesfully completing Chemo?

Paulette - I know what you mean, the Chemo rebound effect with Lupus. Somedays are better, some are worse. DO you find it much worse? I;ve had a vew bad days lately that have been pretty scary.

Amazon - I'd be scared to do retail therapy with you! But if you make it Saint John, let me know, we can give it a whirl!

Regarding diet, I have been a very very 'clean' eater, up until chemo. Lots of fruits, veggies, (lots of variety), very little gluten or milk products and limited meat. I could go on about this for pages, as it was/is very  important for me to help my body 'deal' with inflammation caused by the arthritis but what helped me the most was I saw a dietician monthly who kept me on track and helped with getting rid habits that were not good for me. I would recommend starting there if your going to make any really big diet changed.  I found that there was a lot of mythology regarding some foods effect on the body which is where good dietician will know the real 'scoop', and what is helpful or not. I will say that since I've been on Chemo my diet consists of a lot of carbs and milk -  What my stomach can handle is what I eat, and I am a believer that our bodies do tell us what they need, if we listen. I still eat as much fruit and veggies as possible but they have a super strong taste right now.

I hope all are limited SE today.  2 more days until I start my first Taxotere. Sarcastically, I can hardly wait!

VirginiaNJ

Jab- I will be going to Tiffany (to "reward" myself) 

FairyDogMother

PatAlameda Love the Chemo, How do I experience you?

I'm getting impatient with the treatments. We go back for mammogram Feb 6, 2014. The last chemo is kicking my energy level.  I ran more when I was actually on chemo then when I'm off chemo. 

I love the idea of "rewarding" oneself from completing chemo.  Now I should research what that reward should be.  Tiffany sounds nice. Right now I'm rewarding myself with cheesy movies.

Thank you for helping me get through chemo days.  I just have to keep reminding myself to have patience with the remaining treatments. 

audra67

inks- quirky- I got rash the first time on hips and hand, 3rd time on hands and this last time just super red and sore feet and hands...nice!

Inks-  I made a smoothie today with our blender...it's a nicer / food processor/blender so I'm thinking I don't even need a 'juicer'...it worked..

I used 1 kale leaf, cup spinach, 1/2 cup oatmeal, flax seed, blueberries, blackberries, banana....and OMG it was good!  It made a HUGE cup and I could only drink 1/2 for breakfast and now froze it and having last half for snack!

That is more than I have ever had before noon, vegie wise !!!  So I think the juice/smoothie is on to something there!

I have no idea why my color changed...I am very confused with computers

audra67

OK I missed this page!

Pat- That was perfect!!! LOVED the chemo poem!  SO TRUE!!!  I am trying to be 'normal fast' too and this end is taking a long time...my SEVERE stomach pain ended day before yesterday but I have been careful with soup and easily digested things yesterday..now I'm having little shooting pains in my neck that tingle...more neuropathy?  I have it in fingertips...

I went out today to two appointments...showered, make up , wig...just got home and took the wig off and it felt like I had been wearing a rubberband around my head...just tingling and throbbing and pulsating like it had been strangled!!! I wonder if it's too tight??!!!! wow!! I've never worn it that long!

I called my MO today and left a message begging to get my port out sooner than 4 weeks he had said...no response yet....that nurse annoys me...they have a MA putting patients in rooms and not sure what she does except tell me discouraging things and act like I'm the only BC or cancer patient on earth to not like chemotherapy or have any side effects or 'be anxious'....!!!! 

Virginia NJ- LOVE the Tiffany

I got a Louis Vuitton bag for my 'reward'...actually got it at diagnosis as my husband was beside himself...and I got a way bigger one than I had been wanting!!!  I LOVE it! I have always wanted one but never wanted to pay that much for a purse...so this was probably only way I would've done it...Yay me!

Jab-  about the amazing sex!!!  I had it once this whole chemo time (poor hubby here too) and I got bladder infection the next day!  When I went to gyn yesterday I told her that and asked about the menopausal changes and sex and would I get more bladder infections etc...she said there is a transitional time where your vagina works its way back to normal and you are more prone to infection.  She gave me Macrobid (antibiotic) to take every time after having sex...and said that would help not to get infections when resume the amazing stuff

My husband paraphrased it by 'when you get a callus built up again from having sex'  Nice, huh?  LOL

VirginiaNJ

oh and a cruise to Bermuda this summer for sure

VirginiaNJ

oh lol RE the Louis Vuitton bag that was my reward for finishing chemo in 2007!

Amazonwarrior

I feel like cr*********p today!!!!

My temperature keeps spiking to 39 C and then dips down again to about 37.5 C when I take some Tylenol for it. I'm packed and ready to go to the ER. But should I go? I am still conflicted. I am going to wait and see if my temperature will actually stay low or shoot up again. I have been feeling weak, achy, headachy, having chills on and off, with excessive gas, bubbly stomach and nausea. No cough, no sore throat or other identifiable hotspots of infection. 

Well, I'll have to wait and see. (Sigh)

Brioche78

Amazonwarrior,

Hi, have you thought of calling your PDN nurse or if you are in Ontario you can always call CCAC. I found they are very helpful.

Take care

lisa137

holy shooting taxotere pains all over, batman!

audra67

Lisa137- So you're saying you like it? LOL, hope it gets better!

Amazon- YES call someone!

lisa137

lol no, it's killing me. i wasn't prepared for it; my pains from neulasta during AC were minimal but man this is something else. Just took half a hydrocodone, and if that doesn't help I'll take the other half. And if that doesn't help I have a giant bottle of percoset that my over-achieving surgeon gave me some time back. I may never have a bowel movement again, but this pain has got to GO.

Brioche78

Amazonwarrior,

My Mo and PDN nurse told me that if my temp goes to 38 to go to emerg. They also said they don't like Tylenol cause it can mask the temp. I would not wait and see I would go to emerg. Better be safe then sorry.

All the best

Bec65

Amazon, the instructions I received from my MO were chills + 100.5 and above = emergency.  I would hate going to the ER too, but it sounds like you should go.  

audra67

Lisa137-  If it helps. mine were the worst the first time, then it hurt/ached less each subsequent time...hoping yours does too

Praying you are OK Amazon!

lisa137

Audra, thank you, that does help SO much!  I was just whining/crying to my husband that if they were all going to be like this I didn't know if I could do it.

smrlvr

Amazon, I am experiencing the same SEs as you, except I don't have a fever. I am very cold, so,I am hunkering down under many blankets.  I would call.

Bec65

Pat, I love your poem!  Aren't you in accounting?  You definitely have a strong creative side. 

Lisa, is the pain any better?

Audra, does your wig have velcro adjusters you could loosen a little?

Paulette, thank you, thank you.

Lisa, Smrlvr, Wallymama, I too spent some time reading on the ILC board you all mentioned in earlier posts.  I agree with Lisa about there being a definite need for better diagnosing.  Too few doctors are savvy about ILC.  With more education on everyone's part, so many of our ILC cancers could be found earlier.  

Wallymama, how are you feeling?  Your progress and MRI results are exciting!

Smrlvr, how are you doing after your treatment?

JAB, thanks for the good reminders about perspective.

I see in some of our posts that some of us know they are having their ovaries removed.  I'm wondering how each of you came to that decision. I'm game to have anything and everything that could cause me trouble removed.  I don't have the BRCA mutation, and the geneticist said she didn't think it was common practice where I'm being treated to removed ovaries prophylactically.  I think I remember my NP saying I'd be tested during radiation to see if I've really gone through menopause.  I guess I'm gearing up to ask my MO her thoughts on whether tamoxifen-to-AI or oopherectomy-to-AI is more effective to prevent recurrence/mets for ILC.

I've been hanging on the couch for nearly 5 days with too many aches to move.  I think I might be feeling ever so slightly better this afternoon.  I hate how Neulasta makes everything so much worse.  On the other hand, it works.  Just this morning I got the actual numbers from my last pre-chemo labs when I hadn't taken Neulasta, and they were soooooooo low.  If I'd known the actual numbers last week, I would have felt worse.  I might ask if I can do Neulasta after my last chemo after all, just so radiation won't be delayed.  

Re neuropathy....my thumbs and first two fingers still hurt, but they're not worse.  I saw a website refer to neuropathy causing difficulty with "fiddly" things.  Yup.  I have pain-related difficulty opening the ziploc on the Costco sliced cheese, changing earrings with posts, buttoning jeans, and texting on my old slider phone.  I could live with it like this, but not any worse.  I think if it gets better over the next week, I'll stay on track to do my last dd Taxol.  If it doesn't improve or gets worse, I'll need to consider reducing the last treatment.  C'mon body...only one more!

I hope everyone gets cozy or cool and has a good night's sleep.

QuirkyGirl

Lisa - I had the same horrific pains the first time and then they got easier.  I also take a lot of ibuprofen to keep them at bay in the days following the shot.  I also take a Colace and some Miralax during those days to counteract the steriods.

lisa137

Thanks, Quirky.... I really do feel better knowing it might not be this bad next time. For the time being, at least, my half a hydrocodone has calmed it down considerably; I'm not ready to run down the street through the snow screaming anymore at least. Like everything else, I guess this too shall pass. Just in this case, it's gonna pass with a lot of painkillers.

You guys are lifesavers. Truly. I don't get on the ledge very often, so thanks for bringing me back.

jab

Hummm - I must rethink my reward! Louis Vuittan and Tiffany eh? And all I want is some good sex?! I don't know if I'm aiming to high or to low!

Amazon - here in NB we are given a yellow card and told if our temp goes over 38 to go to emerg. The yellow card allows us to bypass the emerg crowd to avoid potential infection. I went after my second infusion and the er staff was amazing - even if your not sure, don't take any chances as things can get nasty fast and I'm sure the ER will get you through ASAP

Lisa - sorry to hear your feeling crappy. Did this come on pretty fast? Is it bone pain from the Neulasta or the infusion? i hope your feeling better soon!!

Have a good night ladies

lisa137

@jab it's the infusion, I'm pretty sure, because I had the neulasta shots with all four A/C treatments, took the claritin, and had a very minimum of pain. This didn't really come on all at once, but it DID just get a lot worse today and tonight. My hubby called my doc's office and they said that since I had enough pain killers on hand anyway to pretty much kill a horse (lol) that I should just see which one manages it best and go with that, and I could expect the worst of it to be over in about two days. Definitely feeling better now with just the 1/2 of the hydrocodone, so gonna take the other half before bed....should make me really SLEEP tonight, so there is a bright side to everything. 

On the other side of it, my hubby had to go to the doc-in-the-box today and get a z-pak and a shot in his butt; he's had a nasty head cold or sinus infection or something, but his throat is also really sore. We're just crossing our fingers that I don't catch THAT as well, especially since it's snowing cats and dogs here and we live over an hour from my doc and hospital. So far so good with that though; my throat is sore, but it's always sore for the first few days after chemo, so I'm not alarmed *yet.*

jab

Take care Lisa - no kisses from hubby tonight. My parents had that cold and it went on for two weeks. Not good. Hope you feel better tomorrow.

lisa137

Thanks.   And yeah, I think everyone I know except me has has that cold... it's a real epidemic around here, at least. Hubby had been sick with it since I think Saturday, but only got round to going to a doc today. He feels a LOT better tonight though--he even baked a cake this afternoon, so he's on the road to recovery, at least.

Amazonwarrior

Thank you all for your kind concern. So far I have not gone to the ER because my temp is staying low. Fingers crossed!

Pat, I really like your poem! You inspired me to write a few myself. 

I am dedicating these poems to my loving husband of 20 years to this very day!!!!

Here it is...

CHEMO HAIKU

Hot flashes, cold sweats.

Moonless night passing by.

Sleep escapes me.

**************************************

Dexamethasone.

Constipation, my new mate.

Will you leave or stay?

**************************************

Body aches and pains.

Temperature soaring high.

Boo hoo, I cry.

**************************************

Chemoland's welcome sign!

Hydration is essential.

Drinking ditch like water!

**************************************

Painful, itchy scalp.

Hair falls out like autumn leaves.

Liberating bald!

*************************************

Haunting side effects.

Chemoland scares me so much.

Crying a wolf's cry.

**************************************

Severe nausea.

Mouth sores decorating my tongue.

Like little pearls.

lisacm

hahaha! Love the poems. Thanks ladies. I'm so happy that there are creative people in the world. You truely make it a better place.  

wallymama

Not having such a great morning. Oh, nothing to do with SEs or any other nasty related thing. In the 2 1/2 hours since I got up and turned the heat up, the temp has only risen 1 degree so it looks like I'm going to have to call someone out to look at the furnace.

Pat, nice poem. Keep telling yourself that it's over and it can only get better from here.

Jab, I'm with you on the taxotere, but I still have 3 weeks before I start, so I hope to know more about it from all you guys.

Audra, some of my hats make my head feel like that if I wear them for more than an hour or so. I think it's just the fact that there's something squeezing the head. It's one of the reasons I don't wear them at work much. Better bald than have that headache.

Virginia, what line are you cruising on? I loved the NCL one we took to Burmuda. It's a great place.

Amazon, how are you doing this morning? Sounds like you may be a bit better. Hope so.

Lisa, I hope your pain is better. And I hope that other things can help with the pain. Hydrocodone makes me terribly sick. Actually, most RX painkillers make me sick, food or not.

Bec, hope your pains really are getting better. Doesn't sound good that you still hurt 5 days out.

Funny, my MO has me take 1 dose of steroids on the day after infusion, then 2 doses on the next two days. During the first 2 infusions there was no reaction at all. After the 3rd, my face swelled a bit by the time I took the last dose. This morning, after only 2 doses, I look like a chipmunk!

Hope everyone that has been doing good, stays that way. And really, really hope that everyone who has not been so great, gets that way fast!!