Calling all TNs

Suze35

bkj - I'm definitely going to bring it up with my doctor.  I am very interested in doing SOMETHING novel - I'd love to be part of the group of women that brings better treatments and cures to TN, as well as ALL types of breast cancer.  I still have some time to go myself.

OBXK

Is anyone dealing with chemo induced neuropathy? I had to stop my treatment because of it. I see the neurologist tomorrow. My feet are killing me, neurontin only helps so much.

Thanks, Karen

Huskerkkc

I didn't have to stop treatment, but my Taxol was reduced two different times because of neuropathy. I take Neurontin 3 times a day and L-Glutamine powder three times a day too. I tried accupuncture twice but didn't have much success, although I think it was the doctor maybe, not the treatment itself. Am considering trying that again, with a different doctor. 

Maria_Malta

Hello all... have recently started to read these threads and am finding them very informative but most of all very supportive...I (I am 56 yrs old) was diagnosed with TNBC about 3 months ago, large tumour almost 5cm, Grade 3, started neo-adjuvant chemo straight away, 4 courses of FEC every 3 weeks, and last Friday started Taxotere..mostly FEC side-effects controlled, but suffering quite a lot with Taxotere, since Monday very achy knees and back and ankles and extreme tiredness, can't seem to be able to do anything and feeling very low... so it's good to read about what all of you are doing and planning and researching..... all the very best thoughts and wishes to all of!

TifJ

WOW- Gone 6 days and it has taken me 30 minutes to catch up! Congrats to all with good test results and/or finishing rads or chemo!!

Took the kids (5 and 9) to Disney World! We had a wonderful time. A couple of times I just sat watching my family knowing how lucky I am and realized tears were running down my face. I wondered if I will ever get the opportunity to have another vacation with them. I hate, hate, hate the constant worry associated with this damn disease! I then pulled up the big girl panties and thoroughly enjoyed our vacation. I also got to reconnect with some old high school friends from Florida.

Now, on to the million loads of laundry I have to do!! Happy Wednesday everyone!!

tnbcRuth

obxk- I stopped chemo 10/2010 and my feet are still killing me.  I have to wear soft flip flops even in the house.   I haven't taken anything but am seeing my onc tomorrow for 3 mo checkup.  Will see what she says.  Makes you not want to do anything!  I could be persuaded to walk on the beach tho:)  Its flipping hot and humid here, so visitors be prepared!  On the beach is the place to be.

sukie10

Maria Malta. I just finished taxotere #2. I know it's different for everybody but my first one was pretty awful. I spent a couple of days completely curled up in a fetal position and my feet hurt so bad it was like there were pieces of glass stuck in them. It took almost the whole three weeks to recover from that. I was pretty scared going into #2 but I'm happy to say that this time I didn't have all of those problems. Half the body pain and no neuropathy. My mouth feels gross and my taste buds are shot but it's still so much better than the last time. I did get a major low for a couple of days with both. I've read a few times that the SEs are often a bit better after you get through the first one. Fingers crossed this is you also.

MBJ

My first TC was awful and I was down for almost 2 weeks but after that, it was much more maneageable. 

MBJ

TiffJ: I find myself crying at certain moments especially when I realize how lucky I am to be alive!  Big hugs!!!

dlcw

Hi All - back after a break of a week or so and wow - was I behind!  I took the last 2 weeks and just had a non-cancer life.  Went to all of the end-of-year stuff at my childrens schools, worked, shopped, watched some movies, etc.  It was great.  I started chemo again today - going to do 12 weekly Taxol followed by DD A/C.  So far so good - sleepy from the benadryl, but up from my nap now and headed to a swim meet. 

Hope everyone is doing well!

dlcw

Babs37

dlcw- After my 3rd Taxol infusion, I asked to change Benadryl for Claritin. Worked just as well but without the drowsiness.

Titan

Tifj..I LOVE Disneywordl..we took our kids there when they where 9 and 11..my son wore his Mickey  ears the whole time..even to bed..He hates that we remind him of this now (he is 20)..You took them at a perfect age...My DD was 11 and she really thought she was a little to cool for the Minnie ears so I wore them...what a place to go and forget about things!

Doesnt matter if you have cancer or not..the laundry is always there for you..isn't it?

Yes..the emotions of BC...My DD is getting married in 3 1/2 months...haven't bought my dress yet.....was waiting for my May appts. to see that all was well..it was..but I still haven't bought it yet.....

Ya know..I feel GREAT..I almost feel normal ...(pre BC)...but..there is something inside my brain that says..don't get too confident about your health...I can live with that....

Seriously though..to you going through treatment and just beyond....it really, really does get better..I consider every day that goes by without any issues (ie. weird pains etc)..a good day

I'm not sure how to describe this..but really...I'm almost to the point where I'm actually just living....and not freaking out anymore about things...I figure if something happens..well I will deal with it....

katfinn

I haven't hears much talk of sleep issues?  I'm super tired but when I try to go to sleep, I  can feel my heart beating (or is it just anxiety) and often need to take something to get to sleep.  I also wake up often.  I don't think I'm getting a "restful" sleep.

My other issue is this "pit" feeling in my stomach.  I feel like I want something to eat to fill the void but nothing tastes right and the feeling (can't describe it) comes right back after each little snack.  I'm guessing that is the taxotere.   I guess it's a form a nausea.  I have treatments every 3 weeks (T/C) and can't wait until week # 3 to feel normal again. 

I am thrilled that I haven't experienced the neuropathy (knock on wood).  I'm hoping that keeping my fingers and toes in ice water is doing the trick?  Does anyone else do this (just for the time I'm getting the taxotere during treatments). 

TifJ

Titan- I am so anxious to get to the point of not worrying constantly. I really feel pretty good, but every ache or pain- well, you know!!

I have never seen a smile as big as the one on my daughter's face when Daddy brought her out from getting autographs and pictures with Belle, Cinderella and Sleeping Beauty! We made some wonderful memories this past week!! Your right, the laundry is always there-come hell or high water (wish I could remember where I got that saying from!)

Congratulations on your daughter's wedding!! You'd better get dress shopping soon!!

MBJ- Thank you.

Titan

katfinn..hm..sleeping issues..it will be interesting to see what others have to say about sleeping..I still don't sleep that well...wake up several times during the night...I can't remember when I have slept entirely through the night...it has become routine to me now...wake up..take a drink of water (always keep it by the bed) and go back to sleep.

I know during chemo and shortly after it was due to the drugs.. I don't know what it is now...

TifJ

Katfinn- I had the same experience with TC. I did eat a little something whenever I had that yucky, empty feeling, but it didn't really help for long. I am almost six months out and still have sleep issues which I attribute to a dependency on Ativan and a frozen shoulder (very hard to get comfortable). I really did need it during treatment though because of the racing heart and mind issues! I have had other issues come up since finishing chemo and I guess I used them as an excuse to keep taking Ativan. I too did not have any neuropathy issues and had one big toenail get a small black spot on it, but it is almost grown out now.

How many more treatments do you have?

riley702

Titan, I've had insomnia my entire adult life, so I can't blame it on the SEs of chemo or cancer. But I have a Rx for it now, and that helps.

Suze35

Had that pit feeling on AC, like I was literally starving, but couldn't eat. I hated it, I would force soup or something down. I lost weight on AC.



Did anyone get headaches from radiation? I've had a lingering headache for over 2 weeks now, not severe, just there. I wake with it, and go to bed with it. I know my brain is clear, so not mets there. The only other cancer-related thing it could be is too scary to think about, and very rare, so I'm not going there. Dropped the Prevacid, still weaning from Ativan...



Feeling down, Elizabeth's passing really hit me hard.



My car arrives tomorrow though, so I hope that lifts me up. I'll post pictures.

Anonymous

I'm getting ready to take my horses to Blowing Rock next week for a week of carriage driving.

I'm cranky though. I am depressed/tired over all these joint aches that I have. I guess I figured that they were normal during chemo and expected for awhile afterwards, so I just kept chugging along, waiting for them to go away.

But when my onc told me last week they were "permanent" that really took the wind out of my sails. All BC aside, I've felt pretty lucky so far, but the thought of *barely* being able to get up after squatting down for the rest of my life is a bitter pill to swallow.

I am (was?) a very active person and this physical slowdown puts me at greater risk for injury working around boats and horses. My mind still wants to go, but my body is in rebellion. And now, so is my mind, I guess, since I am just now starting to have to struggle with the lingering side effects of chemo.

How are others handling this? I hate popping pain pills all the time, since I do so often anyway due to headaches. The pain isn't excruciating by any means, but I sure hate the GD daily reminder of BC and it's after effects when my mind is ready to tuck *that* ugly memory away.

Thoughts?

MBJ

Heidi:  I have been doing research on low body temperature problems after having chemo.  I am now convinced that we are in pain because our body temp is no longer operating at 98.6.  I found a great self help website called fixlowbodytemp.com and there is also a support/blog bodytemp.eu.  I am learning to "reset" my body temp to it's optimal 98.6 set point.  After chemo my temp at nite would get as low as 95.5 and I could barely get my daytime up to 98.0.  I did  the "reset" and found I could no longer take Melatonin (it works by lowering body temp at night so you can sleep).  I slept like a baby last night, had zero night sweats (I had horrible night sweats while being this cold) I woke up with a normal body temp this morning, 97.7 and I wasn't in horrible pain!  In fact, I woke up feeling quite rested, even though I couldn;t fall asleep until 12:30 am and woke up at 6:30 am.  My aim is to get my body to stay at 98.6 for most of the day after eating.  I have zero pain at 98.6 F and slight pain at 97.4 (sleeping temp).  I am in severe pain at anything lower.  Not sure if you want to go this route, but I have been researching this for months and my friend with BC in the UK did this reset and her hair and eyebrows and nails all started growing in nicely, her skin became soft again, and she is no longer in any pain.  I was becoming crippled by the SE's of chemo and I am hoping this will address my issues.  I hope this helps anyone dealing with pain issues and SE;s from chemo.  Hugs!

minxie

Constant pain here as well, 2 years out from the last chemo this month. Of course I had BMX and reconstruction as well. But I feel like I have the body of someone 20 years older.

Percocet helps. But I know it's a fine line between pain relief and addiction, and I've crossed it before and withdrawal is no fun. I wish there was an answer for us! 

Anonymous

MBJ- interesting info on the low body temp. Mine was a bit low at my onc appt last week. I also started taking Melatonin several months back (5 mc?).  It *does* help me sleep better, but are you saying I'd be better off without it?

I don't like taking sleeping pills every night, as they quickly lose their effectiveness anyway. This morning, I took a Xanax @ 5:30 to ward off a headache (I often wake with one but am hoping my next Occipital Nerve Block regains its effectiveness <think it was negated by that Botox injection for my neck>). My GP had suggested Xanax for morning headaches and it did help.

I just hate taking a lot of pills! I don't want to overtax my liver since, after BC,  I now know I am a mere mortal. Off to take my temp now...

MBJ

Heidi:  Because I did a reset I no longer need the Melatonin.  Prior to my reset this was the only way I could sleep.  Once I did the reset Melatonin wreaked havoc with my body temperature!  I started out by taking my temperature all of the time.  I found when I was in the most pain, my body temp was very, very low, too.  Melatonin made it worse at night and interfered with my rest making it impossible for me to get up to 98.6 until very late in the day as I imagine it took this long for it to wear off!  I never could get up to 98.6 unless it was in the 80's outside after chemo.  I found a bunch of posts on line of this being a common complaint after chemo but it is never addressed by doctors which I find appalling!  It's a known fact that the lower your body temp the more pain you are in--think of the elderly with severe arthritis-all of them have lower body temps.  Anti-depressants also lower your body temp, and people with depression often have low body temps to begin with so that is why they are depressed.  Once you reset your body to 98.6, the depression and pain should lift.  Since I am right at the beginning, I can't tell you much more then this except that I am determined to not have BC again and to not live in constant pain.  Doing this also re-sets your sleep patterns so that you operate at the right temp at night so you can sleep and the right temp during the day so you can function normally.  It's such a simple thing but the side effects of low body temp are really severe and life threatening in my opinion.  All of us are suffering and if this is a way to undo this suffering, well, I have nothing left to lose at this point.

ksmatthews

I cant remember tha last time I had a good nights sleep.  Always waking up to get a drink, or pee.  When I am sleeping I have such crzy dreams, alot of times about roller coasters?  I usually do not take anything to help me sleep, but occasionaly have took Tylenol Sleep Aid pills.

My dr. has never mentioned anything to me about my temp or about my nails.  Is this something I should be concerned about?

LRM216

Hi to everyone.  I don't post too much since the death of my daughter in late March, but please know that I do come on to read the posts and stay abreast of how you are all doing.  Probably the only good thing that has happened to me since Tiffany's death has been that my cancer no longer takes top place in my existence and everyday life.  It is what it is, and whatever happens with it, is certainly not within my control.  I kind of like thinking of it this way.  Not happy that it took the death of my daughter to get to this point, but I don't seem to have that overbearing "fear" any longer.

Having said all that, I got to wondering over the last week or so about some of the gals that I don't see posting much anymore.  Has anyone heard from Laurajane and Mitymuffin?????  I'll just hope that they are just busy andhave moved on with full and happy lives.

Want to say hi and keep you chin up to all the newbies that have come on.  I hate to see that they are here, but want them all to know they came to a great place and can depend on absolutely any type of help or comfort they will need.

Love to all,

Linda 

tnbcRuth

I am still feeling crappy all over.  I had my 3 month onc visit today and my temp was 96.0.  Its always low and I've had thyroid tests, blood tests, etc.  so upon MJB's advice, I checked into the relatonship of body temp and feeling good.  There is one page that requests $50 donation to be a part of the forum.  I also found this link as shown below and some of text is posted  ...I am determined to raise my body temp. I am so tired of feeling tired and achy.  Heidi, sounds like you are in that lingering stage too.  It doesn't seem fair after all we go through to get well to continue to be sickly.    

http://www.mall-net.com/mcs/coldbody.html 

Core Temperature Raised By:

Molybdenum has helped some feeling warmer. (Metabolic catalyst)
Coenzyme Q-10 (Mitochondria support)
Antioxidants (See CFIDS/CFS)
Adequate amounts of sleep. Melatonin may help, both with the sleep, and with the pineal gland that controls body cycles.
Adequate amounts of water and mineral salts (not just sodium chloride) as found in leafy green vegetables.
Yogic Breathing -- four equally timed cycles:
Inhale fully: first with belly, then rib cage
Hold breath
Exhale: first with belly then with rib cage
Hold lungs empty
Some reliable sources report that several ten minute sessions per day restore body temperature to 98.6. After some time (weeks) their candida, etc. was cured. Again, may not work for all; but it costs nothing to try.
Yakko-Therapy(tm), coming soon to a whoops page near you!
Sustained Laughter, best if about something good you did or lived through as it builds confidence.
Aerobic Singing, but often the mind is not as fully engaged as in talking. Note how professional OPERA singers (E. G. Placebo Domingo,) work their entire bodies into resonance to produce their incredible voices. (Forget rock stars! They are on an adrenalin high and crash when it runs out.) Note the gesturing opera singers use to create the inner effects.
Physical activity, ten to fifteen minutes each day. Does not have to be sweat provoking, just moving. A good walk every evening after dinner use to be fairly common in parts of the country.
Alpha Lipoic Acid / Thioctic Acid has helped some raise body temperature. Comment made about using L-Lysine if cold sores appear, and addingmolybdenum, niacin, Co Q-10, and choline
Red peppers, chili peppers, jallapinios and other hot foods can raise body temperature in many individuals. Some old wives tales relate to this as a cure for some chronic ailments.
Salycilates, anti-cholenergics, etc. Ref: Toxidromes
Wearing a hat may raise head, and thus brain, temperature...
Cyclical thyroid supplementation protocol (cytomel)
Repetitive sounds or blinking lights having a beat in the 6 to 9 beats per second range have helped some... It is the beat frequency that does it. You can build your own from Radio Shack parts. (Ref their 555 timer IC projects book.)
Drumming, or imagining oneself drumming, with a beat in the 6 to 9 beats per second range. Raising the beat frequency as one goes may help.
Thyroid Extracts, such as Armour Thyroid and Cytomel.
Salt and Vitamin C to combat microfilliary worms lymephotos.com has helped some.
See also Dangers of Glandular Extract Based Therapies
Truly Bizarre Methods: Curious note on eating rat and dog meat in China. (Ref. Wall Street Journal May 31, 1991, by way of alt.folklore.urban.) (Note: fever and heat may also be a symptom of some kinds of allergy/intolerance...)
The point is that one needs to rev up one's metabolic processes. That can be via both physiological, and psychological methods. Simply putting on warmer clothing is usually not enough, and in some cases may make things worse due to metabolic reductions the body may make in effort to maintain the low body temperature. This is what causes hot days to be so difficult for such people.

sukie10

Hi Linda. When I was waiting to get diagnosed, still in panic mode and surfing the net for any kind of straw to hang on to, it was something you posted that led me here. I honestly don't remember anymore exactly what I stumbled upon but I remember your picture and whatever it was I knew I had found a good place. Later when I learned I was a TN I found you on another site that I don't currently post on but find very informative also. I'm sorry about your daughter. It's terrible the things that give us strength. 

The body temp discussion is interesting. I breifly looked into that also awhile ago. I read a study about it's relation to TN breast cancer.  My body temp has been low for years 97.3 as an average daily temp. and as low as 93 when I wake up. It was one of the things that caused me to make such a drastic diet change after my diagnosis. I do feel better when its a bit higher. I hadn't thought about chemo SEs and body temp before but that makes sense also. I'll definatly be paying a little more attention to that as well. 

Titan

This body temp thing is interesting..I too have had low body temp..and low BP...lately though..my temp is just where it should be....I'm hoping that is good...actually I am HOT..all the time..not that "good" hot..but hot...I hope that is a good thing.

Linda..I've been wondering about Laura Jane and Mity also...

Titan

I still have body aches as well..creaky neck..some shoulder blade burning..sometimes my legs just kind of hurt...I sit at a computer all day and I attribute some of these pains to that.

I run or walk 2-3 miles per day also...it feels good..not out of breath or anything like that...I'm thinking that I'm ok..but dang you never know..

Suze35

Mity posts at TNBC.org, from what I've read all is good.



New chemo start date - July 6th. This one is firm, no ifs ands or buts. It may move up, but it won't be later than that. I can wait 20 days...I don't think an extra 7-10 days will make or break me, and the radiation is working, so I don't want to quit that to start chemo. But my doctor promised me that date, come hell or high water, lol.



I need to get back exercising, but I'm so sick of these headaches - probably Ativan - and my stiff joints, it's hard. Time to just take a walk.