Calling all TNs
Comments
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Lovelyface - I am echoing what the others have said - be kind to yourself. I started chemo with the mindset that I would get certain things done, eat only organic foods, nothing processed and exercise everyday. That changed when all I wanted to eat was instant mashed potatoes, followed by a few days in which I couldn't walk further than the driveway. There were the good days that I walked for a few miles and ate everything the right way, but there were the self pity days and bad days. I was really hard on myself at first, then realized I need to rest and I would be able to cook something homemade later. It was more important that I did what my body needed at that moment.
Tomorrow I am off from work and will be going shopping with a group of friends from work. I'm not a big shopper, but I do enjoy the group of friends - they are really fun to be with. I should end the day with a few good stories to tell..........
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i could only eat corn lol
it seems ages ago
this too will pass
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Lovelyface: Welcome to the board. I know AC is very hard. I was miserable and very hungry. I was supposed to have 4 Taxol but thankfully I was allergic to Taxol and they swichted to Taxotere. Last last 4 rounds were really mild. I felt ok . Don't freak out thinking you cannot sit for 3 hours , instead take a airplane pillow, a blanket , close your eyes and imagine you are on your way to getting healthier. I kept doing this exercise with my mind and the last 2 chemo I woke up and the machine beeped.
So hang in there. Soon you will be done with that chapter of your life. Hi ladies, so sorry I haven't posted. The last 3 days I have been feeling pain from my MX. Everything is so tight and they haven't even filled yet. It has been bothering me. I finally took my drains off yesterday. Thank God! I was very annoyed by that. So today I was able to take a nice shower. Yay! Hugs and kisses to all of you. Good night.
Lynn18 and Laurajane : How are you ladies?
Have a great night .
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Hey everyone! Good to hear from you Monika! A nice warm shower can do wonders! Sometimes I think I fall asleep when I'm showering!
OK..Paulding Mom..I've been thinking about things...seriously..if you can't get in a trial in Georgia try for one at the Cleveland Clinic.or at the James Cancer Center in Columbus....you can stay with me...I'm only an hour away from both cities and I will help you out..I'm very, very serious about this...We are all ticked off at your doctors but we have to move on and get those mets under control. I have plenty of room for you...really, really, really... think about it...
Oh..I remember the AC and the FOOD! I loved Kentucky Fried chicken and mashed potatoes..I couldn't get enough of them...KFC gags me now...the bland comfort foods seem to be the thing when you are taking AC...eat them if you want them...worry about the weight later...I figure there is a reason why we crave these kind of foods during chemo...
Thanks for your kind words Fighter. Am I doing better..putting cancer out the door? Sometimes..but it is always there.. I don't feel like I'm far enough out to be too excited yet..maybe at 30 months out..you know me and that dog eared chart!
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during AC I ate Chick-fil-A... and I was a vegetarian! LOL!
PauldingMom- Listen to Titan... I think we can get you in under "compassionate care"... same for LauraJane. Do you want help with a letter of medical necessity?
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Michele:
I wrote to Paulding Mom in a post above that I am about 1/2 hour from her and that my onc is using Parp under the Compassionate Care program. I don't know what the ramifications are, but I offered her the telephone numbers so that she could call. God, I hope she has switched doctors and has put herself in more diligent hands. She had no scans prior to her treatment either and was Stage II. I wonder if all this stuff was just sitting there and spreading all this while. It just makes me sick thinking of what she is going through, and all the wasted time she was going to different doctors trying to tell them how much pain she was in and how she wasn't feeling well. This just shouldn't be happening in this day and age. My heart breaks for her. I wish I could just go find her, and drag her off to my doctor.
Linda
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Ladies, thank you all very much re: exercise. I am relieved to hear that it is okay to eat like the way I have been eating, at least until I finish chemo. I am really getting ready to start taking short walks, at least a few times a week.
I just wanted to tell you something which I have begun to do. I take coconut oil and try to massage my body with it everyday. Coconut oil is supposedly very nourishing for the skin. I massage my legs, thighs, breasts (yes, breasts), abdomen area and arms, while watching TV. If there are any knots, like the ones I usually have behind my knee, I notice that they get softer after a few days. Massage is incredible, try it. This is a good way to keep a close relationship with your body. In the East Indian culture, we use massage for healing various diseases and start massaging our kids since the day they are born. I had stopped doing it all these years as there was no family members to do it for me, but I find I can do just as good a job by myself. Try it ladies, you will see a difference in the acceptance of your bodies especially after cancer. You sort of feel a closeness with the different parts of your body.
Michelle - I totally agree with you re: Pauldingmom, how could her doctor have neglected her like this. It breaks my heart to learn that there are doctors like this out there, even in this day and age. I know a few myself. That's why one needs to be smart, research, and demand certain tests. Based on what happened to Paulding mom, I called my onc. office today and demanded that the doctor talk to me about how he will monitor me after chemo. They gave me a longer appointment with him on Dec. 1st. We have to learn from each other's experiences. I suggest we all get a very clear plan for our monitoring with our doctors, which I am sure most of you already have.
Vina
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Lovelyface: That is interesting what you said about massage. About it being used in India to treat disease. It certainly feels good. I am going to try it.
I pigged out during chemo also. I think you should eat what tastes good to you, within reason.
Linda: It's good to hear that your onc is using Parp. I also wish you could take Pauldingmom to your doctor. Hopefully she will get the Parp from hers. I am seeing my onc next week and will ask her about it.
Monika: I am glad you got your drains out. I am still enjoying being able to take a shower. Do you have pain meds to take? I have been taking them but I am starting to feel better and taking less. Will you see a physical therapist? I was referred to one.
I hope everyone sleeps well, good night.
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Senior Moment as experienced by the dinosaurs:
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Ha ha Heidi! So that explains why dinosaurs are extinct! Now we know!
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You women are just to great! Thank you for all the offers. My Onc. is in on the study, but it's still a lottery, one in three women are choosen. Today I do plan to check into what the Cancer Centers offer. I don't know if there are any close by. We live west of Atlanta. I would really like to be close to my family at this time. Understandable. But the fact that you have offered you help fills my heart to overflowing.
God Bless you all ((((Hugs))))
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RE: Massage.... my sister has always been a firm believer in chiropractic care and massage therapy. She actually avoided having to have surgery to remove bone spurs on her heels using deep massage and manuel techniques to break up the spurs (painful, but better than surgery). She also seemed to avoid sugery on her neck after an accident when ALL of her doctors told her she was crazy and she stuck by what she felt was right. During chemo my sister treated me to a massage in which the therapist was experienced in working on cancer patients, she knew not to to massage deeply into the muscles, it was more relaxation. OMG it was the best massage I'd ever had!!!! I was like a big jellyfish when it was over. I do believe massages help you to relax not only the body, but the mind, which in turn helps the body to heal itself and reduce some of the aches and pains.
LJ/Lisa (((hugs))) just wanted to let you know I'm thinking of you.
Monika - glad to hear you were able to get those dreaded drains removed.......and take a hot shower without having to fumble with drains. I know it's hard, but do the exercises they gave you to loosen up the area and I hope you feel better soon.
Heidi - as always LMAO......I've gotten to where I look forward to your daily funny.
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Finally... headed out to drive my horses by the water! I have been so busy teaching Naturalist classes they were beginning to think I'd forgotten them! Never...manure clean-up is too good a reminder.
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Sorry I have been MIA the last few days and I am again rushed this morning! Guess it's good to be busy and not think about cancer for a few hours a day.
Pauldingmom: We are all hoping that you can get in somewhere. Please put yourself first and take the offers of help. That is why we are all here--to lift each other up the best we can. I will say the same to Laurajane: Don't give up hope! I had a lousy first dr and he made me upset to the point that the thought of him doing surgery on me put me in a state of complete panic. I joined a bunch of BC support groups and I asked everywere I went who was good, what was available to me, what were my options and those ladies came through and I found, eventually, great care and great doctors. You will too!
Laurajane: Thinking of you and hoping you find a more compassionate Onc. Never give up hope as there is always something out there! I had my appointments this week and all is good so far. Back to check again in 3 months.
Heidi: I too look forward to all of your funny posts--Thank you for the dinosaurs explanation! LOL!
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Lovelyface: I too ate like a pig while under chemo--nothing smelled good, nothing tasted good and all I wanted to eat was eggs! Massage is so great! When I first had my MX I had one PT appontment and a lovely woman from India massaged my MX area and I just cried with relief it released so much! Very healing. I get to see her today again and I so look forward to it.
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My PT appts wee the highlight of my journey. People couldn't believe i actually looked forward to going.
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I love PT!
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LauraJane: So sorry for your roller coaster ride. Hope the meds are helping keeping you calm. I'll PM in a few days and give you another life story (hopefully a funny one).
PauldingMom: We will be keeping you in our thoughts. Hope you get into the trials.
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Ladies, although this maybe going a little out of subject, I must ask you all for your advice as we are all TN's and this is the best place to find experienced women. And I cannot find literature anywhere which will help me truly understand everything before I decide to give up my own breasts and consider BMX and reconstruction. I am going out of my mind. By the end of December, I have to decide what I will be doing with my breasts. I don't know where to go for information, who to talk to, in order to make this very difficult decision. Different Docs are saying different things. Even the Tumor board recommendation is hardly assuring.
I had an invasive tumor (3.3cm, GradeI II) in my left breast. In addition, there was a small satellite nodule behind the nipple, which was InSitu, intermediate to High Grade. All this was taken out during two lumpectomies, by a clear 3 cm margin in the left breast.
There was no cancer in the right breast, but they did an MRI guided biopsy and took out a nodule which was highlighted in the MRI. The Biopsy revealed that there are "residual columnar cell hyperplasia with flat epithelial atyipia and focul atypical ductual hyperplasia extending to the surgical margin" (this is still there today). One surgeon says this is microscopic, they cannot see this with naked eye, so no more surgery. They put a marker in this area so they could find the place in the future. I am still trying to ask my surgeon to go to this area, and give me clear margins, take all those atypical cells out. Not sure if they will do surgery, since this is not cancer yet.
My Onc. says the 4 steps leading to cancer, atypia is 4 steps out. Yet he says that if I was his sister, he would not recommend that I have a BMX. Possibility that this stuff in the right breast could never turn cancerous or maybe it could, no one can tell.
Reading up on not so good outcomes of BMX and Recons. I am trying my best to keep my own breasts, but my life and safety is my paramount concern. However, I also know that some women have complications from BMX and Recons. and end up taking their implants out. What then? Be flat the rest of your life? Some women's bodies rejects their implants (I have a feeling, mine would do it) and they end up taking them out after a few years. I spoke to two PS and they both did not impress me. Tram Flap would be a huge consideration, major surgery, can't even think of it.
I have also heard in my support group that MRI's reveal too much info. When they say "mild scattered nodular foci" - is this common for all breasts? I also had language in MRI such as "mild scattered nodular foci with intermediate plateau enhancement". I also read up on the Govt. ruling on how pathologists should read path. reports. It almost feels like the path reports are not uniform and could depend on independent pathologist' opinions, sometimes on how they present their reports.
Tumor board recommended lumpectomy and radiation with dose dense chemo. Before radiation, my surgeon wants me to go see her. She seems to be recommending BMX for most women, as we found out in support group. She is BMX hungry.
I am thinking, do women really know the exact nature of their cancer, before they give up their breasts? Or do they do it out of sheer fear? This decision will affect your whole life, i.e. giving up your breasts. Doesn't chemo kill all these atypical cells? My tumor in left breast was invasive (total score was 7, which I am not sure how it compares with others or what it compares with). The Insitu was a grade 2-3, scary. I had one sentinel node taken out which was benign.
One other thing - I had weakly positive 2% of tumor cells progesterone receptor with weak to moderate intensity. They consider 2% as negative. And fewer than 1% estrogen receptor positive, therefore, regarded as negative. I am TN, no doubt.
What kind of doctor can explain line by line of my MRI and Path report to me so that I can make a 100% informed decision, ladies? Can you please help me. I don't want to BMX out of sheer fear and have any regrets later in life. Please help me, if someone out there went through a similar experience. And I am a TN, should I stop this nonsense of trying to keep my breasts and just do BMX, without any question?
Thanks all for reading my long post.
Vina
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Lovelyface: So, if I understand correctly, the tumour board says Lx etc., your onc doesn't recommened BMx, and your surgeon does. Meanwhile, you are trying to balance your fears of recurrence versus a bad PS outcome. I can understand your anxiety. You need more information. One of your doctors should go through your path and MRI line by line and explain. That is their job. Please press for that.
Did you see my earlier post with links? Leading trip neg doctors say that a trip neg diagnosis is NOT (in and of itself) a factor in their surgical decisions. There may be very valid reasons for doing a BMx, but it seems that hormonal status isn't one of them.
As for MRIs, my surgeon warned me that MRIs do light up a lot of stuff (that previously we never would have known about, or gone to our grave with at a ripe old age). There is a lot of discussion in the medical community about MRIs leading to unnecessary biospies and even over-treatment. That's not to say, they aren't extremely valuable as a diagnostic tool - they are. But you need a doctor to fully inform you about what your scan says and how that affects prognosis, if at all.
Finally, I would say, if keeping your breasts is important to you, keep asking questions. Of course, you won't risk your health or life for your breasts - none of us do - but you want to be satisfied that whatever your decision, it was fully informed. All the best.
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Hi Luah. You understand it exactly, yes. I did go to the links you provided and read everything there was to read, and yes, understand that "trip neg diag is not (in and of itself) a factor in their surgical decisions. You are very informed, Luah, that is wonderful and thanks so much for understanding me. You can imagine my anxiety, I can't relax. I am going through a tough time with chemo, but I want to see some light at the end of the tunnel. Will I be doing radiation after chemo or not? if I do radiation and later decide BMX, the PS says the skin will become not too good to get a good outcome, complications could develop. I am just so very sick of this. I HATE this disease with a vengence, and wouldn't wish this on my worst enemy.
There doesn't seem to be any breast experts in my community who would really explain all this to me. But I am going to try going to several, before I give up my breasts.
Thanks again.
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A little fun distraction: (not checked for accuracy)
Trivial Pursuit
Can you guess which of the following are true and which are false?
Answers are below.
1 . Apples, not caffeine, are more efficient at waking you up in the morning.
2. Alfred Hitchcock didn't have a belly button..
3. A pack-a-day smoker will lose approximately 2 teeth every 10 years.
4. People do not get sick from cold weather; it's from being indoors a lot
more.
5. When you sneeze, all bodily functions stop, even your heart!
6. Only 7 per cent of the population are lefties.
7. Forty people are sent to the hospital for dog bites every minute.
8. Babies are born without kneecaps. They don't appear until they are 2-6 years old.
9. The average person over 50 will have spent 5 years waiting in lines.
10. The toothbrush was invented in 1498.
11. The average housefly lives for one month..
12. 40,000 Americans are injured by toilets each year.
13. A coat hanger is 44 inches long when straightened.
14. The average computer user blinks 7 times a minute.
15. Your feet are bigger in the afternoon than any other time of day.
16. Most of us have eaten a spider in our sleep.
17. The REAL reason ostriches stick their head in the sand is to search for
water.
18. The only two animals that can see behind themselves without turning their
heads are the rabbit and the parrot.
19. John Travolta turned down the starring roles in 'An Officer and a Gentleman'
and 'Tootsie.'
20. Michael Jackson owns the rights to the South Carolina State Anthem.
21. In most television commercials advertising milk, a mixture of white paint
and a little thinner is used in place of the milk.
22. Prince Charles and Prince William NEVER travel on the same airplane, just in
case there is a crash.
23. The first Harley Davidson motorcycle built in 1903 used a tomato can for a
carburetor.
24. Most hospitals make money by selling the umbilical cords cut from women who
give birth. They are used in vein transplant surgery.
25. Humphrey Bogart was related to Princess Diana. They were 7th cousins.
26. If coloring weren't added to Coca-Cola, it would be green.
(Scroll down for answer.)
They are ALL true ..... Now go back and think about #16.
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More fun stuff for the trivial pursuitists amongst us: (again, not checked for accuracy)
Where did Piss Poor come from?
Interesting History
They used to use urine to tan animal skins, so families
used to all pee in a pot & then once a day it was taken &
Sold to the tannery.......if you had to do this to survive
you were "Piss Poor"
But worse than that were the really poor folk who couldn't
even afford to buy a pot......they "didn't have a pot to
piss in" & were the lowest of the low
The next time you are washing your hands and complain
because the water temperature isn't just how you like it,
think about how things used to be. Here are some facts about
the 1500s:
Most people got married in June because they took their
yearly bath in May, and they still smelled pretty good by
June.. However, since they were starting to smell . ..... .
Brides carried a bouquet of flowers to hide the body odor.
Hence the custom today of carrying a bouquet when getting
Married.
Baths consisted of a big tub filled with hot water. The man
of the house had the privilege of the nice clean water, then
all the other sons and men, then the women and finally the
children. Last of all the babies. By then the water was so
dirty you could actually lose someone in it.. Hence the
saying, "Don't throw the baby out with the Bath water!"
Houses had thatched roofs-thick straw-piled high, with no
wood underneath. It was the only place for animals to get
warm, so all the cats and other small animals (mice, bugs)
lived in the roof. When it rained it became slippery and
sometimes the animals would slip and fall off the roof...
Hence the saying "It's raining cats and dogs."
There was nothing to stop things from falling into the
house. This posed a real problem in the bedroom where bugs
and other droppings could mess up your nice clean bed. Hence,
a bed with big posts and a sheet hung over the top
afforded some protection. That's how canopy beds came into
existence.
The floor was dirt. Only the wealthy had something other
than dirt. Hence the saying, "Dirt poor." The wealthy had
slate floors that would get slippery in the winter when wet,
so they spread thresh (straw) on floor to help keep their
footing. As the winter wore on, they added more thresh until,
when you opened the door, it would all start slipping
outside. A piece of wood was placed in the entrance-way.
Hence: a thresh hold.
(Getting quite an education, aren't you?)
In those old days, they cooked in the kitchen with a big
kettle that always hung over the fire.. Every day they lit
the fire and added things to the pot. They ate mostly
vegetables and did not get much meat. They would eat the
stew for dinner, leaving leftovers in the pot to get cold
overnight and then start over the next day. Sometimes stew
had food in it that had been there for quite a while. Hence
the rhyme: Peas porridge hot, peas porridge cold, peas
porridge in the pot nine days old. Sometimes they could
obtain pork, which made them feel quite special. When
visitors came over, they would hang up their bacon to show
off. It was a sign of wealth that a man could, "bring home
the bacon." They would cut off a little to share with guests
and would all sit around and chew the fat.
Those with money had plates made of pewter. Food with high
acid content caused some of the lead to leach onto the food,
causing lead poisoning death. This happened most often with
tomatoes, so for the next 400 years or so, tomatoes were
considered poisonous.
Bread was divided according to status. Workers got the burnt
bottom of the loaf, the family got the middle, and guests
got the top, or the upper crust.
Lead cups were used to drink ale or whisky. The combination
would Sometimes knock the imbibers out for a couple of days.
Someone walking along the road would take them for dead and
prepare them for burial. They were laid out on the kitchen
table for a couple of days and the family would gather
around and eat and drink and wait and see if they would wake
up. Hence the custom of holding a wake.
England is old and small and the local folks started running
out of places to bury people. So they would dig up coffins
and would take the bones to a bone-house, and reuse the
grave. When reopening these coffins, 1 out of 25 coffins
were found to have scratch marks on the inside and they
realized they had been burying people alive... So they would
tie a string on the wrist of the corpse, lead it through the
coffin and up through the ground and tie it to a bell.
Someone would have to sit out in the graveyard all night
(the graveyard shift.) to listen for the bell; thus, someone
could be saved by the bell or was considered a dead ringer.
Now, whoever said History was boring!!!
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http://www.snopes.com/language/phrases/1500.asp
Sorry if I'm being a spoilsport.
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riley702- It didn't have to be *true* (like I said, not checked for accuracy) it just had to be *fun*.
I'm also a Snopes junkie and did consider checking the stuff out. In the end though, I just posted it for its distraction value.
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Does this mean I don't have to keep gagging every time I think of #16?
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Paulding Mom - we are getting a Cancer Center of America in Newnan, GA - but the damn thing's not even broken ground yet. Some insurance covers the cost of flying to one - check with your insurer. I know a few other triple negs that have progressed and have flown to one and have their treatments there and have had excellent care and results. If you need anything at all - please, my offer still stands - just pm me any time - day or night.
Linda
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Lovelyface: The decision you face is difficult, and there is no right or wrong answer. Each decision has pros and cons and "what if's". Some women decide to do bmx in order to have a better outcome with reconstruction... in order to avoid radiation. However, sometimes you still need radiation. We just don't have all the answers, so we just do our best to make the most educated decision we can. Have you been BRCA tested? When I had to make the decision, it was a little easier. First, I was small breasted and the BS said I wouldn't like the result of a lumpectomy (which he would have been completely right), so I determined to have unilateral mx. Then, my BRCA test came back positive. I'd decided if it was positive to have bmx, so that was the end of it. I had nipple sparing bmx Oct 7th with immediate reconstruction and have no regrets at all. Do what you feel you need to do in your heart, and once you make your decision, go with it! You'll figure out what you want to do. Sometimes more knowledge makes the decision harder to make. It's confusing. I will say that statistically speaking, studies show no difference on survival between lumpectomy and mastectomy.0
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cc4npg- Well said!0
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PauldingMom - I've been thinking of you and hoping you get to do the PARP trial.
LauraJane - let's hope you get the PARP, too.
Heidi - I always look forward to your humourous (Canadian spelling) posts.
Lovelyface - I had a lumpectomy so I can't offer a lot of advice regarding Mx.
I took a vacation day today and lined up at the passport office to get our's renewed before we go to New Orleans trip after Christmas. The best thing that happened today was I could go shopping, out for lunch, etc, etc. while my daughter and husband were at school (he's a teacher).
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