CMF Question
Comments
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Hi, Hope all had a good weekend. I had my 3rd. tx tuesday, I did not have nausa this time but bad pain after neulasta even with taking the claritin. By Friday I wasn't and still am not feeling right, I guess it is a feeling of light headed or dizzyness. I can't explain it I do have a weird taste in my mouth, i don't know if is metallic or not. Last weeek was brutal here with yhe heat in N.Y. and i'm trying to drink my water, havent been able to drink much maybe 32 oz a day. Today i did drink a 22oz ice tea, a 24 oz water and now a large coke. And my breast is sore all over, i don' t know why or what I did. This is not a good day here. My onc office called when I seen who it was I started yo shake, they only wanted go switch time of appt. Then while on a phone call RO office called, they prob want to know when I'm going there. Next my son's girlfriend broke up with him again, pray for him he is weak for hdr
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Sorry for ranting. Patty
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Patty, don't apologize. We are here to listen to you and to help when we can. Going through treatment is difficult.
I found that I could not drink water through most of my tx. I liked very gingery ginger ale (called ginger beer which I got at Whole foods) and the not too sweet Italian sodas--aranciata and limonata. If your breast is very irritated, you might call your onc's nurse to find out if something is going on---it may be your reaction to CMF (strange as this will sound, my forehead became very red and irritated after one of my tx's and it turned out to be a reaction to the methotrexate).
Others may have different suggestions so hang in there and we will be here for you.
Mandy
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Patty - Feel free to rant to us -- especially if it makes you feel better. Hope your SE's from the neulasta are about over. It took me a good 7 days to feel normal again. Good job on your water and fluid intake! It's so important and will flush out all those chemicals. You should talk with your onc about your breast tenderness, but it's probably from the tx.
Mandy - You are so helpful to Patty and I going through tx. Thanks for the good advice.
Cabmom - The mountains of NC are so beautiful! Know you will have a great summer. Did you note where we play golf at Myrtle? Have a great vacation with your grandchild! Our daughter lets us play golf a couple of times and then we sit with the children while she and her DH do skeet shooting. Mostly we just enjoy the beach though. We rent an oceanfront condo in the Crescent Beach area.
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Mandy-It's very sore, I'm trembling I'm so scared. But this happened a few weeks ago when when I wore one of my old bras. Also I was looking around the boards looking for a few answers to some questions and I found some posts from a wonan who's bc came back same profile as mine. Then I started reading some post from women who were preparing to... And that has got me real upset
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Patty, I am so sorry that you are so scared. I think most of us understand those fears all too well. My advise is to talk to your onc and HOPEFULLY it will be nothing major. Remain positive. I still find myself getting freaked out when I read to much so when I catch myself doing that, then I tried to refocus and remember all the things that I'm actively doing to stop this.....remind yourself of all the great things you're doing to stop this terrible thing that we're all dealing with. I have a very strong faith so when it gets to be too much for me to handle, I hand it to God and know that he will be there for me regardless of what I have to deal with. I guess I finally realized that I'm not fighting this battle alone. God's been with me all the way....that gave me great comfort.
golfergrandma, we are looking forward to going to the beach but it's actually our little boy not our grand-baby. He's only 10, however sometimes it feels like he's 16....He's a really good kid and I am so very blessed.
Mandy, so nice to see you back! Hope you had an awesome time.
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patty- Hang in there! We have all been in that scared, "oh my God" mode. I always found that diversion was my best weapon against fear. Did you know that the mind can not hold two thoughts at the same time? Go ahead and try, it can't. I have always gotten really nauseous and creeped out by gross things (think vomit on street, sorry too much info ). When I walk by, I immediately think of something beautiful (my son's face, the ocean anything). It is impossible to hold the two thoughts at once....and then the bad one passes. I used this strategy a LOT during treatment, especially chemo,rads, anesthesia. I usually visualized riding my horse as a young girl. The more details I could conjur up, the better it worked: the smell of my horse, the feel of his fur etc... I also watched really silly movies. Nothing like a couple hours of mindless escape to help shift your perspective.
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Patty - Both Designer Mom and Cabmom are a great inspiration! I try not to think too hard about what I'm going through right now - in fact, try not think about it at all! Thus, playing golf, and other activities to keep busy are getting me through tx with a good attitude.
Cabmom - Sorry for the mistake about your son -- since I'm a grandmother, I relate to others that way as well. Also, all my friends have grandchildren too. Have a great time at the beach with your son.
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Woke up this morning with my urine darker than yesterday. Any comments? My husband wants me yo call the Dr. Oh yeah right because I want more bad news, blood tests, needles and a possible hospital stay.
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Woke up this morning with my urine darker than yesterday. My husband wants me to call the Dr. Um. no.... I don't want more bad news, blood tests, and a possible hospital stay.
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Patty: My urine was all kinds of strange shades during chemo; sometimes really dark and with a really odd scent. So I suspect your dark urine is a chemo side effect of some kind. Still you should phone your onc with the symptom because perhaps she will have an idea of what you can do. If you cannot bring yourself to call your onc, get your hubby to do it for you. In the meantime, keep your fluid intake up--that can't hurt. But do call your onc. She is there to help you get through chemo though sometimes I realize you feel that they are on the other side of the fence and not that helpful.
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Thanks Mandy-I just called anf waiting for the nurse to call. The other day I had tuna and my uribe smelled just like the sandwich.
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Patty.....hope you are having a better day. Thinking of you.....
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Cabmom- Thank you, The onc nurse called and said to drink drink drink. I have drank 2 16oz glasses glasses of water and a cup of milk so far. I still have this weird light headed feeling, it could be the wrather here in NY. I don' t know. I think i'm just going to rest the day away. Thanks agIn Patty
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Patty: when we are going through treatment we have a heightened sense of awareness about everything going on in our bodies. There may be simple explanations for everything. My urine used to vary in color to during treatment. I had four treatments of AC before the CMF tx and the day of treatment, my urine would be pink from the Adriamycin. I had been told this would happen so it wasn't a surprise. Also if I didn't drink enough, my urine would be dark and foul-smelling. I would notice this particularly if I went during the night. Also we forget that we get some of our liquid intake from foods and if you are not eating as much as usual (I wasn't as I was nauseous) then we need to drink even more. Also with the hot weather we had until a few days ago, it's easy to become dehydrated. Drink whatever you can -- plain water if you can tolerate it, otherwise naturally sparkling water, soda water, tea. I think sodas should be a last resort if you find other liquids unpalatable. I did suffer a little with mouth sores during chemo and I know anything sugary will aggravate those.
I'm wondering if your sore breasts were the result of sweating in the hot weather and wearing a too-tight bra, maybe causing a heat rash. Try to go braless as much as possible. You will need to get used to that when you are going through rads. After years of wearing constricting bras it seems weird at first, but when you get used to it, it feels liberating.
Please don't panic when the onc's office calls. As time goes on, you'll be grateful that they are so vigilant and so responsive to your calls.
I found it useful to keep a diary of SEs during treatment. I soon found that no matter how weird the SE was, someone else on these boards was experiencing it too. Have you joined the thread for others going chemo at the same time as you?
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Thanks MaryNY- I'm drinking a lot of water but the color of my urine is not clear. The nurse said to give it a day or two . I'm just hoping this will not interfer with my next tx on Monday. That will be my hLf way mark. People don't realize just what a long road this is it all started with my mammo on New Years Eve day. A day I always disliked even as a kid. I took it easy today, but managed yo talk my dog for her evening walk. I don't know if it is the chemo or the neulasta kicking my butt? The secretary from ghe rad office called me and asked how long I was in tx for, then in the conversation I learned I have to get tattoos I think this is freaking me out too. I don't know where sll these woman get yhe courage. Sorry for going on and on, my husband asked me again about going to a sipport group at the hospital close to me. I really don't want to interact with people face to face. The truth is seeing sick people REALLY upsets me. Thanks for caring. Patty
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Patty: sorry you're having such a lousy day. I think it's the Neulasta that's kicking your butt.
I too didn't feel like going to a support group while I was in treatment, as I felt too emotional. Maybe it would have helped but I felt that I would just sit there and be a sobbing mess. But I did join Gilda's Club and found it enormously helpful ... and still do. I will PM you my phone number and you can call me if you want to talk any time. Remember you can always use these boards as your support group. I think you started chemo in May -- you could join the May support group - Chemo May 2011 (I'm having trouble inserting the link. If it doesn't work look for the may topic in the Forum: Chemotherapy - Before, During and After). There you will find many women who are currently undergoing treatment and most on much harsher regimens than CMF. I think you'd find it enormously helpful for suport and suggestions on how to deal with SEs, etc.
The tattoos for rads are tiny, about the size of a little freckle. And you will hardly feel it as they are doing them, I think it was just like a tiny pinprick. The tattoos are used to help position you so the rads are delivered to the target area.
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MaryNY gave you a good tip Patty. I kept a chemo diary of whatever side effects I had---it helped me to remember them when I spoke to my onc and that allowed the onc to help me. Also I sent you a private message about tattoos. I did not have them when I had rads. That is something you can talk to your rads onc about. So wait till you meet with the rads onc before you worry about radiation.
Take care
Mandy
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Oh Patty, how well we all understand the side effects, the anxiety associated with oncologists and other doctors, and the panicky feeling that confronts us when we notice things that are different with our bodies. Everyone has given you such good advice. It is so important to drink lots of fluids. We all found the special drink that tasted good to us when it was hard to tolerate the water. I drank lots of Crystal Lite and sucked on lots of popsicles. Try some different things if you're having trouble getting the water down. Hang in there, gal! Take it one day at a time and try not to worry about what tomorrow will bring. Before you know it, you'll be through these treatments and you'll be looking back at them.
Mandy, I also miss my grown son and his family. My son got a promotion and they are moving from KY to Mississippi. I'm not too fond of that because they're getting farther away from Illinois instead of closer, but they have to go where the job leads them. We're heading to KY this weekend to help them paint, clean carpets and get their house ready to put on the market. Hopefully they will be settled in time to get the kids enrolled in school.
Hugs to all of you gals!
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patty- Good tips from everyone. The tattoos really are like the teensiest freckles. I really can't even find mine now. Unless you have religious or other reasons for not wanting them (then there are other alternatives) I didn't find them bad... bothersome, but not painful. I agree that you would find enormous support in your "real time" BCO chemo group. In addition to the ladies here on CMF, I connected so closely with the women in my June 2010 chemo group. There is something unbelievably special about going through chemo side-by-side in real time. I equate it to how soldiers bond after being through war. I have become close friends with several of those ladies and we are actually planning a reunion get together so we can all finally meet in person. My linky thing doesn't work, but if you copy and paste this address, you will find the May 2011 chemo thread. I know those ladies will welcome you too if you introduce yourself. Of course, keep on coming back here too and let us know how we can help.
http://community.breastcancer.org/forum/69/topic/768029?page=36#post_2443328
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Hi.....how is everyone doing? The board has been really quite lately. Praying that everyone is doing well.
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Yes, let's hope that no news from the CMF gals, means good news! As for me, I'm fine. I have just been busy keeping up with the yard, my golf schedule, and the daily routines. We spent the weekend in KY helping my son get his house ready to put on the market. They will be moving to Mississippi as soon as they find a house. It was indeed a working-filled weekend but we accomplished alot. I must admit that I'm tired! I, too, hope that all you gals are doing well!
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Like RitaJean said, hoping no news is good news. Hope it means all CMFers are busy and well. I came across this youtube video posted by a BC survivor. It is a reminder that Vitamin D appears to be protective against cancer. It is a little long, but full of good scientific studies. I especially liked the study saying that keeping Vitamin D levels between 40-60 reduced BC recurrence by 50%. Here's the link
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Thanks for posting the link, designermom! That's reallly encouraging. It looks like I need to up my intake. My level was in the upper 20's when it was last tested.
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Thanks Designermom....that really is encouraging!!! I really need to check into this.
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It is good to have VitD levels in our blood over 40, over 50 is better
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HERE IS THE LINK TO UNIV. OF CAL. SAN DIEGO STUDY..
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SoCalLisa- thanks for the link. It confirms that 4,000 per day is safe and in most cases necessary to get and keep our levels up. Wow, only 10% of the population (mostly people who work outdoors) have protective D levels. They theorize cancer rates would go down if everyone would just get their levels higher.
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With Vitamin D, do realize that excess Vitamin D is stored by the body since it's fat soluble, so unless your doctor advises otherwise, it's better to stay within dietary guidelines. There are organizations out there such as the Vitamin D Council and Grassroots Health which advise taking huge amounts of Vitamin D, but remember they have a vested interest in the subject.
Remember, as with many things, more is not necessarily better.
Here are the IOM guidelines as included in the report Dietary Reference Intakes for Calcium and Vitamin D (Nov 2010):
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MaryNY- As a former nurse, I can attest to the pathetic knowledge most doctors have in nutrition (I think only 10 hours of study?). Most doctors will not recommend other than the USDA standards, perhaps because of liability. New studies show these findings are quite outdated. Most studies show there is not much danger of doses under 10,000 a day. As for the organizations promoting vitamin D having a vested interest, I can't quite believe that since vitamin D is dirt cheap, not a lot of profit promoting it. SoCal's article was very interesting as it referred to recent meetings of doctors re-evaluating vitamin D recommendations. They think the 400 per day will probably be increased soon. Government recommendations move slowly. If the science is good, I am jumping on it now. Here is some of the article from SoCal.
"Most scientists who are actively working with vitamin D now believe that 40 to 60 ng/ml is the appropriate target concentration of 25-vitamin D in the blood for preventing the major vitamin D-deficiency related diseases, and have joined in a letter on this topic," said Garland. "Unfortunately, according a recent National Health and Nutrition Examination Survey, only 10 percent of the US population has levels in this range, mainly people who work outdoors."
Interest in larger doses was spurred in December of last year, when a National Academy of Sciences Institute of Medicine committee identified 4000 IU/day of vitamin D as safe for every day use by adults and children nine years and older, with intakes in the range of 1000-3000 IU/day for infants and children through age eight years old.
While the IOM committee states that 4000 IU/day is a safe dosage, the recommended minimum daily intake is only 600 IU/day.
"Now that the results of this study are in, it will become common for almost every adult to take 4000 IU/day," Garland said. "This is comfortably under the 10,000 IU/day that the IOM Committee Report considers as the lower limit of risk, and the benefits are substantial." He added that people who may have contraindications should discuss their vitamin D needs with their family doctor.
"Now is the time for virtually everyone to take more vitamin D to help prevent some major types of cancer, several other serious illnesses, and fractures," said Heaney.
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http://www.youtube.com/watch?v=TQ-qekFoi-o 