Join Us

We are 217,583 members in 84 forums discussing 160,638 topics.

Help with Abbreviations

Topic: I think my brain is burning...

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Nov 1, 2007 04:42PM - edited Nov 1, 2007 04:42PM by Peaches70

Peaches70 wrote:

...everytime I get a hot flash, and I've been getting them way too much. I thought the side effects from Evista (which I take for LCIS) were supposed to die down after 6 months. Well, this one isn't. I'll be okay for part of a day, then wham! I'll have so many in a row that it feels like a fever. I really hate this. Oddly enough, they seem worse on days when I have less coffee and no alcohol than on days when I have 5 cups of coffee and a glass of wine. I am SO tired of having my face go red and feeling like my whole body is spontaneously combusting. It just wears me out.

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Page 1 of 1 (18 results)

Posts 1 - 18 (18 total)

Log in to post a reply

Nov 2, 2007 08:38AM leaf wrote:

I am so sorry you are going through this, Anne. You really have had a very hard time with LCIS and all the consequences thereof this year. It sounds exhausting.

It sounds like some women don't have any trouble with hot flashes, and for some others, the hot flashes affect their quality of life so much that they need to quit.

I sure wish I had a magic cure for this so you didn't have to go through this.

If coffee and wine help, then as long as you can tolerate the other effects of these-then why not? Or another anti-estrogen?

I find I can tolerate my hot flashes better in the colder seasons, but I don't have them any where near as severely as you do. I 'm so sorry.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 2, 2007 09:49AM badboob67 wrote:

Hi Anne. Boy, can I relate! I am taking ZOLADEX shots and ARIMIDEX for my mets. The absolute worst side effect is the hot flashes. It seems like, if I have one in the morning that I am sweating all day long! I got some relief from taking NEURONTIN (generic name: GABAPENTIN), 100mg 3 times daily. The only problem with that is it gave me a mild headache and caused weight gain at the rate of 5 pounds per month! I have now reduced the NEURONTIN to just one at bedtime so I can sleep better at night.

I have been having hot flashes for around 18 months now. They haven't seemed to slow down at all. (I am 40 and was VERY pre-menopausal when starting hormone therapy). I have noticed that I have more problems when the weather is changing from fair and sunny to rain and stormy or vice-versa. I also have more frequent hot flashes when the seasons change. Eating anything also seems to bring on a hot flash.

I carry fold-up hand fans in my purse and a little pump spray bottle filled with witch hazel to spritz on my face and neck if I get exceptionally hot. I dress in layers and try to avoid getting too hot because it seems like there is a domino effect if I do get hot. I also try to wear all cotton if possible. My underclothes and bra are cotton also.

I know that some people have good results using effexor for the hot flashes.  I hope you are able to get some relief!!

(((HUGS))))

Diane 

When you're down to nothing, GOD is up to something! bb67.wikispaces.com/ Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
Log in to post a reply

Nov 2, 2007 10:06AM Peaches70 wrote:

Thanks for all the support and suggestions. I'm sorry about the venting, but I am truly frustrated. For more than 3 years before I started Evista, I was having pretty significant HFs, enough to drive me to take estrogen, which worked great! In that time, I tried black cohosh, a number of other natural remedies, and even soy, which I was really not supposed to take due to being on thyroid meds. Nothing seemed to work except the estrogen. I've been on Effexor since spring. At first I thought it was helping, but the benefits were short-lived. This summer was like one long hot flash, even inside in the AC. I gave up trying to do much of anything outside, because I felt like I would pass out. I took Neurontin years ago for chronic pain, and I will not take it again. I got sporadic blinding headaches. One strange thing is that my mother had no HFs at all.

Of course, it didn't help that we have had the hottest early fall on record. I am really glad that the weather is finally breaking. Hey, maybe I'll save money on heating this year. My husband always used to keep the house too cold for my preference. Now it will be him that suffers. (ha!)

I read somewhere on this site about choosing between life and quality of life. Boy, is that true! Now I am going to apologize for being such a whiner, considering what so many women on this site have and are going through. Diane, forgive me.

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Nov 4, 2007 05:16AM leaf wrote:

Anne, I think this is one of the real advantages to having an LCIS forum of our own.

We should be able to find support for ANY of our concerns. People with different diagnoses and backrounds can have different concerns. This thread is about YOU, and YOU should be supported!!

If Diane starts a thread in this forum, I will try to support her,too. I don't mean to speak for Diane, but I think its VERY important that everyone feel like they are supported, no matter what their backround or history.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 5, 2007 07:03PM nevaeh wrote:

Here Here Leaf,

I agree, we all need each other and support regardless of where we are in this dx.

I am so grateful for all of you.  I haven't yet started my Arimidex (I'm dreading the SE's-----) but I know I can count on you guys to help me through; I want to be there for you guys too.

Diane and Anne:  My doc suggested Black Cohosh for hot flashes--have you tried that?

Also, maybe we could all get jobs in a meat packing plant and put our faces in the freezers all the time!

Look Well to This Day and Trust in God Dx 8/1/2007, ILC, Stage I, 0/1 nodes, ER+/PR-, HER2-
Log in to post a reply

Nov 5, 2007 08:39PM Peaches70 wrote:

nevaeh,

Long before I even had a reason to come to this site, I was trying black cohosh. It seemed to help when all I had was the night sweats, but once I went into full-blown hot flashes, no more. Plus, I read that you should only take it for about 6 months. At any rate, the only thing that seems to help is ice to the back of my neck, which is not all that practical while I'm at work...or driving...or in the MRI, etc. But I am learning to really appreciate those times when I'm not having one. And...looking forward to a cold winter. I used to say "Where's a good hot flash when you need one?" on cold days. No more. I'll relish every shiver.

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Nov 6, 2007 02:00AM amythol wrote:

I have been taking the drug Celexa as part of a prophylactic migraine regime so when I started taking Tamoxifen, I really didn't have any hot flashes. Then cam a whole month of switching insurance and going without Celexa for that time period and the difference was astounding. I must have had 50 or more hot flashes a day without the Celexa. I was irritable and my migraines with unmanageable.

The following ,month my Celexa percription was refilled and I was able to take it once again. WIthin two or three days, the hot flashes almost completely subsided. The migraines roared onward, but the Hot Flashes were history.

Log in to post a reply

Dec 19, 2007 11:38PM liveit56 wrote:

I was just diagnosed with LCIS and have been taken off my hormones and they want me to take Evista and so afraid of the side effects. 

I did not like taking the hormones but my flashes and mood swings were so bad I had to do something and was scared the whole time I took them and wanted off of them but not for this reason..now I have been told Evista can cause hot flashes and and up your risk of stroke and blood clots...this is just all to much to absorb right now for me.

I am gald there is this spot for women like us....because we sure need a place for info and just to vent and share.

Log in to post a reply

Dec 22, 2007 11:44AM Peaches70 wrote:

I just heard about Celexa. I'll look into it. Interestingly enough, I've been phasing myself off Effexor - down to every third day now, and the hot flashes had not gotten any worse. Then a few days ago, I came down with some awful throat infection. I was running a low fever, but haven't had a hot flash since I got sick. (Thank you, Lord)

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Dec 29, 2007 09:14PM mamaotis wrote:

Hi all~ 

I've been on tamoxifen for a month now.........and the side effects are starting!  My oncologist had said if you didn't have many symptoms when going through menopause; you might not have many with taking tamoxifen, either.  I had a surgical menopause~EVERYthing was taken out--started HRT, had my first breast bx a couple of months later...and decided to quit taking the HRT immediately.  Didn't really have any symptoms then....but now, the hot flashes have started and I can cry at almost anything!  This is going to be a LONG five years!

Also,I wanted to let folks know that I have a 2006 article that I'll e-mail to anyone that would like to read it~it's 12 pages, so I hated to copy and paste the whole thing here--it's entitled "Evolving Concepts in the Management of Lobular Neoplasia" and was e-mailed to me by one it's authors.  It's probably one of the more comprehensive/up to date articles I've read. 

However I still feel like my mind is on overload~I guess I just keep reading/researching hoping something will help me make up my mind about BPM....

Again...I'm glad we have each other in this forum~best wishes for the new year!

Nancy

 

Log in to post a reply

Dec 30, 2007 08:49PM Kitwe wrote:

Mamaoitis, I would love a copy of that article  suzejogs@gmail.com

Thanx

Kit Dx 5/27/2010, DCIS, Stage 0, Grade 1, ER+/PR-
Log in to post a reply

Dec 31, 2007 02:22PM Peaches70 wrote:

They stopped! The hot flashes suddenly ended about 2 weeks ago, right after I got sick with a sore throat. Have not had one since. Incidentally, I also got off Effexor about the same time, so maybe the Effexor was more of a cause than a help.

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Dec 31, 2007 03:14PM awb wrote:

mamaotis---just sent you an e-mail.  Thanks so much for the article---very thought provoking, lots of good info for us with LCIS.  Happy NEW Year!

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
Log in to post a reply

Jan 8, 2008 11:49AM - edited Jan 8, 2008 11:51AM by charm

Since October, I  have undergone 2 surgeries (1) for LCIS and (2) to widen margins. Second surgery biopsy returned clear. BUT, I have had weeping from the site, a staph infection treated with antibiotics and now have been drained twice. My surgeon says it all is not unusual. My next appointment is to discuss radiation treatment. Is all this to be expected? I too have major hot flashes since I have been on Tamoxifin, and I am post menapausal and on Gabapenten (800 mg x4 per day for Neurpathy). I would also like a copy of that article charm@tampabay.rr.com

Log in to post a reply

Jan 8, 2008 06:38PM Peaches70 wrote:

Charm,

Why did you have to have margins with LCIS? All that I have read said that there is no reason to have clear margins since it is not really "cancer." Same for radiation.

Anne

Dx 1/25/2007, LCIS, Stage 0
Log in to post a reply

Jan 11, 2008 11:46AM awb wrote:


Charm--I'm wondering did you have any reports of any DCIS or invasive bc along with the LCIS? Because then  any discussion of margins or radiation would make sense, but all the literature says that margins and radiation are not relevant or indicated with LCIS (since it is generally multifocal, multicentric and bilateral in nature--meaning it could be everywhere and anywhere throughout either breast; they wouldn't know where to radiate specifically (like with DCIS) and  it could escape any margin.  The only "real way" to eliminate all the LCIS (or at least 90%) is to undergo bilateral mastectomies. ( a choice I'm not yet ready to make--I was diagnosed with LCIS 4 years ago and I'm very closely monitored with breast exams, mammos alternating with MRIs every 6 months now, and I take tamoxifen for prevention of invasive bc.)  The big problem with LCIS  is the uncertainty---they don't know who will go on to develope invasive bc and who won't. I've read numbers as low as 5% and as high as 25%--recently 17% was the number I saw who would develope an invasive bc within 15 years.  It is an in situ bc; non-invasive bc; there's a LOT of controversy surrounding it; many in the medical community feel it is "just" a marker for future invasive bc, others now feel that in certain circumstances it could be an actual precursor of invasive disease--I tend to believe the latter, but that is JMO; but even with that belief, I'm not going for PBMs at this point.
  Wishing you good luck with your treatments.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
Log in to post a reply

Jan 11, 2008 01:00PM Lolita wrote:

Actually, the literature on LCIS is not uniform with respect to whether good margins should be obtained for LCIS. My radiation oncologist thought it important to either cut out or radiate any remaining LCIS in my breast.   It is very controversial.  http://www.oncolink.com/conferences/article.cfm?c=3&s=33&ss=197&id=1300
Dx 10/25/2007, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Jan 12, 2008 08:39AM leaf wrote:

Maybe the server is temporarily out of service, but I couldn't get the link to open.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

Page 1 of 1 (18 results)