Calling all TNs
Comments
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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.
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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?
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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
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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.0 -
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.
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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...
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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..
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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.0 -
Hi there. I am 56. I had my annual mammogram in Mid-May 2011 and was called back for a look. Spot they looked at was fine but radiologist saw another spot and wanted to do an immediate biopsy. I have rheumatodi arthritis so I had to wait 5 days to get the NSAID's out of my system.On May 25th, 2011 had biopsy and knew the radiologist saw something and he virtually confirmed it by his language but couldn't actually state it.Got a call from my PCP 5/26/2011, small invasive cancerous lump with intermediate to dense nuclei.
Saw breast surgeon 5/27/11- they work fast in Boston.Had lumpectomy 6/8/11, 2 post op surgeries for hematoma over 2 days (6/8 and 6/10) due to need to remove some of muscle at breast wall. Results invasive ductal carcinoma, triple negative, 1.1 cm, clear margins, grade 2, lymph-vascular invasion indeterminate. 4 days in hospital due to hematoma and those 2 extra surgeries- I am 57 shades of red!.
Saw oncologist Tuesday (6/14/11).Plan to start 4 courses of taxotere/cyto on July 7th with steroids night before and post infusion and neuplasta(?) injection 24 hours later. Then on to a 6 weeks of radiation.
Will get 2nd opinion at Massachusetts General Hospital on June 28th as they are doing a lot of research there and the oncologist nicely encouraged me to take advantage of the Boston Cancer Centers research possibilites and to make sure I was feeling comfortable with her recommendations. Tried on wigs today with a friend...shocked to find I look good as a blonde!
Scary being triple negative and so glad I found this forum. Wonder if anyone has gone this route of treatment and have any suggestions. Thanks.
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I don't enjoy walking anymore...feels like a chore and leaves me even more tired. I need low impact "exercise", like swimming. I stay active, but seem to pay the price. Not sure what the answer is. Curves closed here and I use to do that. I don't know, I just am living a Catch 22, I guess. We're opening our pool soon, so maybe I'll try swimming again...except that I hate cold water, our pool is very big and I don't even want to think about the heating cost to keep it at 86. Retirement has made me a cheapskate....3K for a season of heated poolwater? I don't think so....would rather put that towards a trip! Plus, we "gunkhole" a lot in our boat and the bay/river water is usually quite pleasant. Gosh, I feel like such a whiner... need some cheese to go with it, I guess.
Time for bed...been doing lots of physical stuff getting horses & RV ready for our trip to Blowing Rock for carriage driving. Need some rest!
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Saw the neurologist about my neuropathy, he put me on Nortriptyline - an old anti-depressant, for the pain. I'll let you know, if it helps.
Tomorrow, I see the anesthesiologist, who will be working with my eye surgeon next week, when I have my cataract removed (a little cancer treatment gift). I feel like the only thing I do, is go to the doctor!!!!
Healing thoughts to everyone in treatment.
Wishing you all well.0 -
Paintingmywaythru - welcome to our thread. You'll get a lot of support from the wonderful women who post on here. I also had Taxotere/Cytoxan with Decadron steroids and Neulasta shot the next day. Chemo is no picnic but it's doable. Glad to hear things are moving along quickly in terms of diagnosis and treatment. Take care and don't hesitate to ask us any questions you may have.0
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I need to work. I am a therapist and se individuals and couples and worry that I won't be able to keep my schedule. I don't want to disclose my Rx as I don't think it is appropriate but I am concerned there will be days I won't feel well. I hope to get chemo Friday...go to work Monday int he afternoon for 6 or 7 hours but many of my days are 9 or 10 hours long...is this do-able?
Thank you...it does feel so scary and overwhelming but I am doing well given everything and my daughter marries July 2nd!
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Paintingmywaythru: I am sorry for what you are going through, you are right, triple negative is scary, however, it sounds like you have found some good doctors and good that you are stage 1.
I had my chemo treatments on Fridays. I would feel pretty good for a couple of days, but around the 3rd day I wouldn't feel that well. It seems like many people are able to keep working though.
Heidi: Hope you get rested up for your trip--sounds like fun.
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Hello LInda,
I just wanted to say that I was very sorry to hear about the death of your daughter.Take great care of yourself at this very difficult time of your life.
Best Wishes,
Sylvia.
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HeidiToo,
Enjoy Blowing Rock. The trails there are beautiful. My DH and I were hoping to take our horses there and ride now that I am through with chemo, but I have re-excision surgery sceduled for July 8. Still trying to see if I will feel like fitting the trip in.
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Heidi - enjoy your trip! I wish I had some advice to offer you :-(. All I can say is I empathize.
Painting - my worst days were 3-7 on AC. Maybe schedule your chemo mid-week and see? They can always tweak your schedule by a few days if needed. Welcome, I am so sorry you are here :-(.
OBXK - ugh, such a rough time! I hope the neuropathy improves and that your eye surgery goes well!!
If I missed anything or anyone, my apologies. This thread moves so fast!
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What an awful week! My washing machine busted yesterday, and it's a cheap fix, but the part is in California, so not until Wednesday. Ugh.
And even worse, we have freaking BED BUGS! OMG, I am so annoyed! DH travels for a living to NYC, and so... 1500 to treat my house. ARGH!!!
I can't start my chemo until July 6th...19 more days, and I can't believe I'm counting down...
All this with a stinking Ativan withdrawal headache.
But I don't care because... My car is here, my car is here! It is so pretty, I love it!! I will post pictures later!!
Have a great day everyone!0 -
Hi, just catching up after a week away in St. Lucia, with family... rare opportunity for us all to be together.
TifJ: Can completely relate to your emotional response. Sometimes I just glanced over at my 2 sons (21 and 18), and think... wow, what did I do to deserve such wonderful men in my life? Saw some stunning scenery while in St. Lucia, and thought, I am so glad to be alive to see this! And last night, flying home at 40,000 ft., a full moon outside my window... all I can say is, the world is full of staggering beauty that simply takes my breath away. And I observe and appreciate it much more since my diagnosis (the silver lining).
Congrats to those with uneventful scans and check-ups and welcome to all the new ladies here... sorry you have to be here, especially at such young ages, but yes you will find excellent support.
And last, Titan, wtf... you of all people got "moderated"? All I can say is, you go, girl!
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Hi ladies, I am back. Its been quite a ride this go around. But only one more to go yipeeeee. I just wanted to pop on and thank all of you who kept me in your thoughts and prayers.
Hugs
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Thank you Suze35, I am a Susan too. They have scheduled my chemo for Fridays as I am off then but now I wonder what to do...I think that I will play it by ear. I just don't want to have to keep cancelling patients for therapy (I am a counselor) , because they need a healthy therapist, we need the money and because then my clients will begin to wonder what is going on.
I hadn't thought about post chemo sickness, thought it would be shortly after and had originally asked for Thursday but the oncologist isn't there then and so they wanted it on a day she was there and Friday was the day I picked. I might want to think about picking Wednesday...appears no matter what I may be feeling ill more days than I thought.
So are you saying that the zofran and compazine and ativan don't help enough with the nausea, yucky feeling and you just have to get through a few horrendous days a few days after CT treatment?
To everyone I know we walk this with courage but I appreciate knowing you are all there and this is a place that we can let it all out.
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Ah St. Lucia... The Body Holiday at Le Sport....
Here's "The Black Pearl" (yep, used in Pirates of the Caribbean) shot from the beach showing the famous phenomena known as the green flash:
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Heidi: That is just beautiful!
TnbcRuth: If there is a $50 donation request, I have never seen it nor paid it! The moderator does spend lots of time with you on bodytemp.eu and once my reset "takes" I will probably pay him for his time as he puts in many hours helping people for free.
Suze: Bed bugs suck!!!! I hear all of your clothes have to go in the dryer, beds and furniture have to outside in the sun, all sorts of time consuming stuff. I am so sorry to hear about that but I AM SO HAPPY YOU HAVE YOUR NEW CAR!!!!!!!!!!
Titan: Here is the really weird thing I have discovered about low body temp: you can feel really, really hot at 95.6, 96.5, 97.2 and in fact 98.3 and 98.9 fee very similar and the only way to know what your temp really is is to get a good Vicks thermometer with an instant read.
This is what I think about body temperature and TN's: I think the reason excercise helps us is it can raise your body temp so the more you excercise the better you do. However, this isn't true for all of us. There are many ways to raise your temp but it takes alot of effort and being concious of it and the benenfits are no more pain and brain fog (fixlowbodytemp.com). The dr's don't even take notice of this and just blow it off but the body works at it's optimal at 98.7 and none of us are operating at this temperature. My feeling is if we can just get our body temp up all of these SE's will go away and we will live a good long life. Sounds simplistic but my brain no longer works, I can barely walk and I can no longer use my hands at low body temps. I plan to fix mine because it's the only thing that has given me any hope.
Linda: Thank you so much for coming on here and saying hello and letting us know how you are doing. I lost my little brother many years ago and I cannot imagine the pain and loss when it comes to losing a child. Big hugs!!
All of the Newbies: Welcome to this thread and you will find great support and help here!
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Heidi - the green flash!! That is a portent of good luck, I see good things for you down the road :-).
Painting - another Susan :-). Everyone's experience is different, and I'm not sure about CT, as I did AC, then Taxol with Carboplatin. What I can say is that my nausea was very well controlled, that wasn't the issue. I did Neulasta shots, which had flu-like side effects for me that kicked in around day 3. Also, I felt very drained and fatigued until my WBCs started to rebound, usually around day 7. It was cumulative for me, so by my 4th AC, it was harder to rebound. I can't quite describe the feeling, but I don't know if I could have worked those days. I know others have.
The Taxol/Carbo was much easier on me, and I didn't need Neulasta. I probably could have worked through that if need be. I also did a longer course of treatment - two months of AC, three months of Taxol/Carbo. If I recall, you have 4 treatments...it might be a bit kinder to you.
I'm so sorry you have to juggle the two. Maybe someone who worked or is working through your specific regimen can give you a sense of what to expect.0 -
Heidi: Beautiful picture.
Luah: Would you recommend St. Lucia? We are looking for someplace to go with our kids this summer. It looks very nice.
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Katfinn, I will be having the same treatment as you and seem to be similar in stage, etc. How was your treatment? What were your side effects and how did you manage? I start July 8th.
To everyone out here, it is so good we have each other.
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Paintingmyway,
I have had six cycles of TAC which is considered one of the strongest regimes - I am self employed and have my own small business - I have worked all but 8 days following chemo. The first two cycles I went back to work a little sooner than that, but for the most part I have rested for a week following each treatment and then worked every day thereafter. I've had to dip into what tiny little retirement funds I have but at least I had them to rely on. I'm worried about finances and keeping my health insurance constantly - but thank goodness I am finished with the chemo now and just have surgery and radiation to go!
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Thanks for the info on Mity - glad to hear all is well.
And to Sylvia and MBJ - thanks so much for your kind words. I am hanging in there, some days I laugh a lot, and smile a lot at all the memories, and other days - I still can't believe it happened. Normal, I'm sure - but hard nonetheless.
Sending love to you all,
Linda
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Painting, I hope you are able to find just the right time to have your chemo, without upsetting your practice too much. I started to feel the worst, the morning of the 3rd day.
Heidi - great photo!!!!
Good news, the anti-depressant I started taking, has decreased my neuropathy pain!
Karen0 -
I was diagnosed in February 2011 with TNBC--I am 59 years old. I have had five doses of TAC, every 3 weeks, with one to go. I will have a double mastecomy in July. I made it through my daughter's wedding in May, and I have a son getting married in September. Life does not stop when you get cancer! My chemo treatments have not been too bad--fatigue and weakness have been my biggest issues. My eyes water a lot (the Taxotere has narrowed the tear ducts), and my taste buds are altered. I would like to hear from other women who have chosen not to have reconstructive surgery. My reason for not doing it is my age, plus I am very small-breasted, so wearing prostheses will not be that different from wearing padded bras (and my husband is fine with my decision). Any regrets from anyone who has chosen this option?
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Thank you LMT and OBXK. I talked to a chemo nurse today who said that they want me to try the Friday start..they want me to start right after our daughter's Wedding and that was the day they had that the oncologist was most free. They sound flexible but suggested that I see how it goes and consider taking Mondays off as that would be day 3. I asked about Wednesday but then I would be moving all my Wednesday clients around. I think I can just tell my clients I am taking long weekends as it is summer and try to work through it but I think the wig will be a give-away to any client who isn't too self involved. everyone's info is so helpful.
Last summer I had a knee replacemetn and so many of my clients were thrown off and had a hard time with my absense so this won't be nearly as bad as that for them.
I know I will just be playing it by ear based on how I feel and I will have to work at taking care of myself rather than be ingthe caretaker.
Thank you everyone.
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