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Jane, how are things going for you???

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Posted 1/12/2010 1:07 PM (GMT 0)
Been thinking about you.

Hugs...

BEV

Posted 1/13/2010 4:47 AM (GMT 0)
Hi Bev, how sweet of you to think about me.

I'm OK, feeling fine, had my surgery October 6th. I've been putting off radiation, but have decided to set up my appointment and get it over with. It's very difficult to start something that you know is going to make you sick.
I've done a lot of reading about Arimidex which I will start when six weeks radiation is finished and that hormone drug scares the heck out of me. Common side effects are many and severe. I will try it, but if I get any of the 'common' SE, pain, bone loss, nausea, lack of sleep, arthritis, osteoporosis I will stop taking the drug....can't handle five years of any of this.

My ONCO score is 15 out of 100 (chance of recurrence) so it's nice and low and I'm looking into alternative treatments.

When I was first diagnosed I was not at all worried, but the more I learned about BC and treatment the more worried I became and now I find myself thinking about it all the time.

Thanks for your heartfelt concern Bev. I'll keep you posted.

Jane
Posted 1/15/2010 1:14 AM (GMT 0)
Jane, I was dx'ed at 36, and my best friend was a bit older than I was. I remember at the time, she told me, "I wish it were me instead of you. I'm old. I don't need my b**bs anymore." The next year, she was dx'ed with breast cancer. Someone said something similar to that to her, and she was really upset about it. I reminded her that she had said almost the same thing to me. She said, "Yeah, but back then, I didn't know how bad breast cancer was. I thought they just cut off your breast and that was it... I didn't know you could die from it!" How quickly we become educated in this disease. I have a cousin who was dx'ed a couple of years ago. She specifically asked that I not talk to her about it. She didn't want to know anything about it. I will never understand people who don't want to be informed about what is going on with their own bodies, but there are lots of people like that.

The one upside... you may find yourself thinking about it all the time, but I think being aware of our mortality makes us count each day as the gift that it is. Don't know if you're there yet, but I think you'll get there!

Hugs...
BEV
Posted 1/15/2010 5:34 AM (GMT 0)

"Yeah, but back then, I didn't know how bad breast cancer was. I thought they just cut off your breast and that was it... I didn't know you could die from it!"

 

My thoughts exactly, but I'm there right now thinking about it all the time and thinking this can't kill me.

My early upbeat attitude has hit a brick wall and mostly because of the treatment (and incessant reading about BC, which I do not regret)....rads and most of all five years of hormone therapy.

How can I do something that will cause me five years of pain and misery, endless side effects and do I have a choice, probably not, but if things go really bad I will probably take my chances and stop Arimidex.

I simply cannot understand, but have the greatest admiration for all the ladies and you who endured chemo and/or hormone therapy how you did it, got through it with no guarantee it will work.

Oh Bev I pray your right that I will get there and believe that I could die. I am in denial and I know it.

I will call my oncologist Friday 1/15 and make the appointment to start rads. I've put it off far too long.

Bless you for being here.

Jane

Posted 1/16/2010 1:01 PM (GMT 0)
Jane, I'm not sure I was trying to convince you this could kill you, but we sometimes we take from things said what we need to hear!  I'll tell you a couple of more stories, then.  My friend I was telling you about, she took tamoxifen for 5 years, did great, and within a few months of her doctor taking her off of it, she had a massive metastatic recurrence.  It was in her liver, lungs, bones...  Another friend just decided to stop taking tamoxifen.  She was tired of it.  Again, within a couple of months, she had mets.  Both of these friends have left our party and gone to have their own now.  Moral to this story... not only can you die from it, but it's best not to mess around with your treatment plan.  My philosophy is, it's got to be better than being dead.  If your hormone blocker is causing you too many side effects, then there are alternatives to discuss with your oncologist.  

We'd like to keep you amongst us... you have a lot to offer this world!

Hugs...

BEV

Posted 1/19/2010 4:38 AM (GMT 0)
Bev, I know you were not trying to convince me of anything in fact you've helped me more that you know.

Just going through the why me stage as well as this must be a bad dream...can't be real so I'll just pretend it didn't happen.

Because of your posts to me I have finally made an appointment for radiology. Going Tuesday morning 1/19 for the first time where according to breastcancer.org they will tattoo me and explain the whole procedure. Have no idea when rdas will start, but I know it will be soon.
I will also try the Arimidex and hope to have minimal side effects, if not then will look for alternatives. I cannot imagine being in crippling pain for five years as well as developing osteoporosis.

How sad that your friend completed her five years only to lose the battle and how frightning it must have been to hear the outcome. All I can think of is why and how can this happen.

Thanks Bev for everything you say....You have made me realize I have to stop fooling around, thinking that I cannot die from this, and get serious about BC.
Tomorrow is a big day and I feel good about it, thanks to YOU.

Jane
Posted 1/19/2010 1:01 PM (GMT 0)
Good luck on your appointment today! Glad you're going.

Hugs...
BEV
Posted 1/20/2010 12:44 AM (GMT 0)
I wanted to pop in and say that rads is not that bad, just a little at the end. Be sure to get a good lotion. I used on that I think is called Glucan. Also, I am finishing up on Arimidex -- will be 5 years in August. I've been lucky. No real problems to speak of. I have a little joint pain in my fingers, but I have always believed that chemo started it, rads added a little and Arimidex might have added a little more. It is totally o.k. I take 1 Aleve a day. I actually have had some sleep problems every now and then, but I honestly believe it is from my personal life's stresses and from my thyroid.

I'm one that believes that if you think you'll get sick -- you will! So, Jane, think positive and see how this goes.

Judy

Posted 1/20/2010 1:53 AM (GMT 0)

Thinking about you too Bev had an appointment today to prepare to start rads and wanting to let you know that you are my mentor you encouraged me to get started and I did, this morning.

The doctor explained the procedure and skin care, use Camay or Dove soap only and creams will be prescribed for me when needed, she also said to avoid vitamins CAD&E while on radiation, but did allow me to take 1000 IU of D3 down from my usual 2000 IU.

I would have a few tattoos (3) which they did today for a referance and will put a few more on next visit to pinpoint where the radiation will go. At first the radiation will be where the tumor was and then my entire breast. Also had a cat scan, Xrays will be taken on my next visit. Since my cancer is in the left breast I was concerned about damage to my heart. Dr Weiss assured me there will be no damage...she has been doing radiation for 20 years and has never had it happen.

All in all it was a good visit. I'm on my way to a complete recovery.   tongue

Jane

Posted 1/20/2010 2:10 AM (GMT 0)
JUJU, That's what I needed, someone to tell me it wasn't so bad.
Every post I read on line is so negative, so much pain, suffering that I had to wonder how they could take that pill everyday and many didn't, they just up and quit. Quite a few said they both looked and felt 90. Not good

Thanks for sharing....really.
I'm thinking positive even though I was told rads will be for 7 weeks, not 6. Oh well.

Jane
Posted 1/21/2010 12:08 AM (GMT 0)
Yes, it is seven weeks, but I promise you each visit is very short. I was fortunate to go to a satellite facility near my home. I waited about five minutes, changed clothes and went to the machine. Honestly, it took longer to line me up than anything. I felt that the real irritation of radiation was having to go every day for a few seconds of radiation treatment. I actually got my "boost", the place of the tumor, at the end, and that is what caused the "burn". I was sensitive for about a week before it started to "cool".

As for looking like 90, it was chemo that did that to me. I changed the color of my hair to look "different", but took about a year to get some decent skin color back.

I  suppose I walked a little slower during radiation, but it was a hot summer so it really did not matter. I drove myself to each treatment and went for a little "stroll" afterwards. Everyone reacts differently so I hope your treatment is as positive as mine.

Judy

Posted 1/21/2010 3:03 AM (GMT 0)
Judy, I will not be taking any chemo, just Arimidex. How come you had both chemo and Arimidex and how long were you on chemo?

It was the Onco DX test report that decided what I will be taking and I'm not sure it was offered or even available five years ago. I'm HER- er+ pr+ stage llA with an Onco score of 15 out of a possible 100 so am fairly low, in fact low enough that I thought all I would need is radiation.

I've heard about the 'boost' they give you, but didn't realize it might burn even more.
Have to agree with you that it is a bother that it has to be every day. The good part is it's 'only' seven weeks. I could have it done in a hospital about 4 miles from me, but my Oncologist says I have to go where she is and that's about 40 miles to and from.

I wonder if you could share with me how they monitored you during the five years you were taking Arimidex. Also would like to know if they do any mammograms, pet scans, CT scans, blood work, EKG's...etc.

I've done a lot of reading since diagnosed and it's all running together not to mention how much I've forgotten so talking with you helps a lot if you don't mind. Seems we both have the same kind of cancer and both are on Arimidex. BTW how nice it is to hear your almost finished, five years seems like such a long time.

I'm relieved to hear you didn't have any of the really debilitating side effects I've been reading about and that is the best news I've had so far. I've been reading a lot at breastcancer.org and after reading many pages have found only one seemed to have no problems with Arimidex. Have to think that the ladies who were side effect free just don't post.
There were a few that suffered so much they stopped the drug.

Thanks so much for passing on your experiences, getting it first hand is no doubt the best.

What do you mean by "get some decent" skin color back" ???

Jane
Posted 1/26/2010 1:00 AM (GMT 0)
Jane,

I mentioned in another post that I only had 16 rad. treatments. They gave me a cream/lotion to use after my treatment and at bedtime. Make sure you put it ALL over the area being treated and on your underarm!!! I was only told to stay within the markings and my underarm was not part of that. I noticed after the 13th treatment my underarm was raw and very dark. It took about 2 weeks for that discomfort to go away. I would not have had a problem if I had known to use the lotion under my arm.

I will tell you that even though I only had the 16 treatments I was very tired. Radiologist told me to expect that and she was right!

Compared to the chemo radiation was a breeze. Going every day was a drag, but each day was a little closer to the end of the journey.

Robin
Posted 1/26/2010 2:39 AM (GMT 0)
Robin do you remember the name of the cream/lotion?

The nurse told me they will be giving me an Rx for something for skin care. I would like it to be the same that was prescribed for you since you had good results.

Thanks for the heads up on applying it under arm, and total area, will do.

I've completely recovered from Lyme disease this past Summer and the fatigue while sick was debilitating, absolutely overwhelming. I hope it's not as severe with radiation. I will have seven weeks of it, 35 treatments.....UGH
Posted 1/26/2010 10:13 PM (GMT 0)
Jane,

My radiologist gave this to me. it is in a plastic tube that stands on the cap.

The company is Carrington. The product is called RadiaGel. Hydrogel Wound Dressing. It is a clear gel that feels sticky for a few seconds and then after it air dries completely disappears into the skin. As I mentioned I had only 16 treatments, but for women who have more treatments the radiologist gives another cream after some number over 16 as they did not give it to me. However I did get an unused tube from a friend who had 33 treatments.

The second cream is made by OrthoNeutrogena. The product is called Biafine. Topical Emulsion. It is in a aluminum tube similar to toothpaste. It is a white cream that is much heavier than the gel I used. I did use some of this on my underarm and nipple when I felt discomfort. This woman was also a patient of my radiologist, and I mentioned that I had received that cream from my friend the radiologist said that was fine and to use it.

I know there are several gels, creams, and lotions available and if your radiologist hands you one you can be sure it will work. I'm fairly sure they don't want you to have a bad experience.

I want to share some information with you that I learned from my radiation tech. He said that radiation stops the growth of new cells in first layer of skin, which is several layers below the skin that we touch. One of the reasons radiation causes redness and discomfort is that the top layer is damaged, and through normal everyday life is shed. The normal plan for the body is to move newer cells to the top to replace the dead cells, but since radiation stops the growth of new cells there is a time when the body doesn't have cells to replace the dead ones. The trick to all this is to be careful about clothing rubbing the skin that is being treated, and to try to keep your arm from rubbing the side of your body whenever possible ( this makes you look ridiculous, because you walk around with your hand on your hip sort of like a fashion model), but it works!

I am not sure you how tired you will feel, but be kind to yourself. I think I was so tired because I went right from chemo to radiation and was working full-time, and going to college too, and I'm going to be 60 in Feb.

I hope this helps.
Robin
Posted 1/27/2010 3:43 AM (GMT 0)

Robin you bet it helps, this information is mostly new to me so it's really appreciated.   

I was told to wear loose fitting, preferably cotton, clothes.  A bra is no problem as I don't need to wear one since my lumpectomy and reconstruction which was a breast lift. I've been told it's best to go without one.

I've written down the names of what you used and will ask for the same since you did so well with it.

Underarm irritation was never mentioned maybe because my lymph nodes were clear and hopefully I won't be radiated there, but I have a feeling your nodes were clear as well and you could still have a problem.

As for being tired you are to be commended for taking on all you did, specially college, while doing chemo and radiation not to mention working full time.

I went back to school at 40 to get my RN (associate degree) at 60 which is where I am right now, I don't think I could do it even if I didn't have cancer. Robin you are amazing.

The best help and information about BC cancer it's treatment, side effects, etc comes from right here where personal experience is golden. Soon I will be able to share my experiences and I'm kinda looking forward to it.

Starting rads February 2nd and will let you all know how it goes.

Jane

Posted 1/27/2010 11:27 PM (GMT 0)
Jane, I am so glad you got some good information from Judy and Robin! And I think you've already shared some of your experiences, new though they are. Let me tell you... a lot of things have changed since I had my treatments, and we always need new people to add to discussions, too! I know sometimes MK and I feel like dinosaurs around here! But we USED to be the younguns, right MK??!?

Anyway, just want you to know that, when a newbie visits the board, your input is needed as much as any, Jane. So always feel free to share. I know at one time, we had the "buddy" system going. When we would get a couple of newcomers at one time, they would adopt each other as "chemo buddies," or "rads buddies." It was really nice for them. We don't seem to get as many newcomers these days, but I always liked that concept.

Take care, and good luck with your rads!

Hugs...
BEV
Posted 1/28/2010 12:31 AM (GMT 0)
Bev, I don't think I've shared very much, but thank you for for your kind words and you can bet I will share all I can in the future.

One thing I will never forget was the minute I was told I had BC and needed a biopsy and a lumpectomy I thought no big deal, didn't even faze me, remove the cancer and I'm done with it. I was not afraid of either procedure.

I hadn't the slightest idea of what was to come, radiation, hormone therapy five l o n g years of it, pet scan, MRI, SIDE EFFECTS from rads and hormones and ongoing monitoring for life.

Now you would think I would know this being a nurse, but I didn't. Cancer and treatment was among the many things that are not taught. You will only learn this if you work in a cancer center and it comes from on the job training. I worked in a small hospital mostly on a med surg floor and could take care of a post op patient with my eyes closed.

So what I'm saying is just because your in the medical field does not mean you know much about anything more than patient care and your immediate duties and even if you did more it is soon forgotten if not used. That's why at every nursing station there is a manual if needed. One exception is Diabetes, studied heavily in nursing, because it is so common and many patients hospitalized for other reasons have it.

Now what I have has hit home and it hit hard. Knowledge is power and scary as well because most of us tend to learn all we can about our disease and find we have to do things we are afraid of. The future seems so uncertain, but because of you and many others on HW I know there is a future, but not without life changing situations and not all bad either.

As for newcomers I see some, but many are here today and gone tomorrow. What a loss this is because your right about what they have to say, what questions they have contributes so much.

You, MK and Tavish who also helped me so much when I first joined are not dinosaurs you are the mentors and veterans and are well loved by all.

Jane
Posted 1/28/2010 2:15 AM (GMT 0)
Jane,

My lymph nodes were clear also, but the angle at which they had to put the radiation machine caused the underarm to be involved. Make sure you ask about this when they are showing you how and were to put the cream. I was not told that my underarm would be affected, but it was and it got very sore.

Hang in there. Feb. 2nd .... ground hogs day. Some times going every day to radiation felt like that movie ground hogs day. It got old at only 16 treatments.

Robin
Posted 1/28/2010 3:45 AM (GMT 0)
Robin my tumor was in my left breast so I am very concerned about radiation damage to my heart. I'm pretty sure that my underarm will be involved and very glad you mentioned the possibility because I will certainly bring the subject up.

If you've ever researched breastcancer.org then you will know of my radiation oncologist, Marisa Weiss, so I feel she knows her stuff. She told me in her 20 years of experience she has never caused heart damage.

Yeah, Groundhog Day, good movie and like you I'm about to live it......for 35 days :-(

I'm hanging in, appreciate and need your encouragement.

Jane
Posted 1/29/2010 1:31 AM (GMT 0)
Jane,

I had two small tumors in my left breast too. They told me all about the possible heart damage, and also the possibility of having my lung in the way, but I'm sure they were able to block all unnecessary sections so that my heart and lung were protected. That is one reason the angle of the machine was so low on the left side sort of below the table I laid on. The radiation was sent from below the table across my underarm and up past my nipple. The machine was repositioned on the right side of my body, but higher and the radiation went from my breast bone to the nipple.

The tech. told me that radiation travels in a straight line. The strength of the radiation is 100% on the outside of the breast and by the time it penetrates to the nipple it is 50% and continues to reduce to 0%. So by repositioning the machine to the other side the strength begins on the outside at 100% and drops to 50% by the time it get to the nipple, and again reduces to 0% by the time it is done. This way the entire treatment area gets 100%.
Did that make sense?

The tech's. get their directions from a team of other folks who are schooled in radiation. The team gathers all the information from your individual test results, pathology reports, and information that your radiologist gave them. They calculate the angles, the strengths, and the timing of each treatment. Ask your tech. about that part of the process. (remember algebra? well these folks actually use it!!) and I thought there was no value in learning algebra.

As you see I asked a lot of questions and got lots of answers.

Robin
Posted 1/29/2010 6:34 AM (GMT 0)
Robin, I kinda get the idea of what your saying and trying to get a picture of it in my mind. I'm sure when I get my first treatment it will be very clear to me. Sounds like you get radiated from both sides and angles so now I see why the underarm burn. My lung was never mentioned, never thought about that.

This Tuesday will be my first time and will tell you how it went for me and I will be asking lots of questions too. I hope Doctor Weiss is there for my first treatment.
I know I'll be getting a few more tattoos, have three now, and Xrays on tuesday.

about Algebra, unbelievable, had no idea either.

Jane
Posted 1/30/2010 1:13 PM (GMT 0)
Jane,

I worried about my lung as I am a 17 year survivor of lung cancer. No radiation, no chemo, just surgery to remove 1 1/2 lobes of right lung.

Enjoy your weekend. We are getting a foot of snow today. It's pretty, but I've had enough winter.

Robin
Posted 1/31/2010 12:52 AM (GMT 0)
Jane, sorry to be so late in replying. First of all, the ONCO-DX was very new, very expensive, with results undocumented when I was diagnosed. As for Arimidex treatments, I have had no PET scans, and unfortunately, I believe neither of my docs realize I have had no bone scans. I plan to address that in April. For testing on Arimidex, they draw blood each vist to check for possible damage, I believe to the liver or something like that. My sister's ONC also draws  a CA127 cancer test, but mine never has.

As for radiation discoloring, it's just like a sunburn. Within three weeks, everything had peeled away, but I am left with a permanent patch of skin that is perhaps a shade or two darker than the rest of me. Otherwise, I always have a yearly mammogram, yearly checkup EKG's but only because of my age. I believe that is acceptable since I had right side cancer, not left. As for stopping Arimidex, NEVER. I would have had to be very sick to do that. Many years ago, in 1993, a dear friend stopped taking Tamoxifin after only two years because of the "side effects". One can never know if that made a difference, but her cancer returned and she passed in 1998. That made me determined not to stop, regardless.

Seems like you are well on your way to tackling all this work. I am sorry that you must drive all those miles for treatment. For me treatment was every day, but I only saw the doctor once a week.

Hoping that all is well with you.

Judy

Posted 2/2/2010 2:16 AM (GMT 0)
Jane,

I'm thinking about you and sending positive thoughts your way.

Robin
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