Dis Breast Cancer Survivors - GAGWTA!

[Laurajean1014]

No. But just visited my OBGYN the end of last month. Haven't had a period for several months. He said I coudl easily go back to have periods again after I go off Tamoxifen. So it can happen, I guess.

Ah, something to look forward to!

 

[MerryPoppins]

That's what I said. And his answer was that I could be having a period every month right now, so enjoy the time off.

 

[snappy]

Hey gang - has anybody had any experience with getting their periods again after being told they were in menopause? Please pm me - I don't want to get too graphic on a public board like this. Let's just say it's pretty awful.

Quick history: I'm 46, was diagnosed March 2002, lumpectomy, chemo, radiation. Did Tamoxifen for almost 3 years; my oncologist said I was finally "officially" in menopause and switched me to Arimidex Feb. 2005. As of last week, no more menopause. Had blood work done last Thursday; prob. get the results on Monday. Has this happened to anyone else?

Hey Amy, are you new? If so welcome, if not pardon my error.

I am 51, have been on Tamoxifen since last July. I went into "medical menopause" around October I think. You are younger, you are even more likely to be in "medical menopause" as well. I expect my menopause to be permanent especially since I'll be 56 before I'm off Tamoxifen.

I think I would consult my Gyn for a pelvic examination if I were you. At my last BC support meeting we talked about how menopause problems seemed to fall through the crack, they did not seem to be in the realm of the oncologists. One survivor said her doctor was not comfortable discussing some of the intimate problems related to menopause. It seems weird, because you actually see the oncologists a lot more often, so when issues arrive, it seems like it would be easier to address them with the doctor you see the most often. Especially having been on Tamoxifen, I would make sure what you are experiencing is not abnormal.

By the way, the research our BC support group facililtator did showed that the side effects of medical menopause are ten times worse than natural menopause. Does not seem fair, does it?

Good luck and please let us know how you do.

 

[JoannaOhio]

When my hair did come back, chemo accomplished what years of bad home perms couldn't - I now have curly hair.

That happened to me, too, but it didn't last. About two months later it started coming in straight again. One of my daughters has very curly hair, and she says I'm lucky that mine straightened out. She's always struggling with hers.

 

[Amy]

Thanks for your replies. I got my 1st period in 3 years on Wed; Thurs. it was like a faucet opened and I freaked out; I NEVER had a period like this. Saw my gyne, had a sonogram and blood work. He said he thinks my ovaries decided to come out of menopause, won't know for sure until the blood work comes in (probably Monday). He also said it's highly unlikely for someone to start getting periods again after going so long without them (3 years for me), but it does happen. He said this first one will be very heavy and crampy, but things should "get back to normal". Heavy is an understatement - 3 days later, and I still can't go more than an hour without a trip to bathroom! Cripes, I liked not having periods any more; I don't want to go thru this again!

I also talked with my oncologist, and she suggested giving me a shot of Lupron to "bounce" me back into menopause, depending on what the blood work says. However, my gyne said Lupron only lasts for 90 days. And since you can only take Arimidex when you're post-menopausal, looks like I'll probably be changing meds, maybe back to Tamoxifen? Who knows.

In the meantime, Playtex and Kotex are lovin' me right now.

 

[Pea-n-Me]

Thankfully can't help with this subject...

 

[laurabelle]

Happy Birthday Ann! Here's to many, many more happy, healthy years ahead!!!

Amy- I had one like that between my first and second chemos, it was awful. I was 36 yr old at the time. They put me on Lupron and I stayed on it for 3 yrs and was in chemopause the whole time. After I stopped (I hated the side effects) it came back about 3 months later and I've had it ever since. I took Tamoxifen for 5yr and have finished that. I'm considering having an oopherectomy so I can take Arimidex. I'm going to look into it more in the fall, right now I'd like to just enjoy my summer! HTH

 

[laurabelle]

Thankfully can't help with this subject...

lol! NOT one of the highlights of my cancer journey, I can assure you! I wonder if it's more a problem for those of us who are ER/PR+ ...

 

[laurabelle]

At my last BC support meeting we talked about how menopause problems seemed to fall through the crack, they did not seem to be in the realm of the oncologists. One survivor said her doctor was not comfortable discussing some of the intimate problems related to menopause. It seems weird, because you actually see the oncologists a lot more often, so when issues arrive, it seems like it would be easier to address them with the doctor you see the most often. Especially having been on Tamoxifen, I would make sure what you are experiencing is not abnormal.

For really good info on the subject, look around on this website: http://www.breastcancer.org/ I saw the doc who runs this do a seminar on "How to get your groove back" which she writes about here too.

 

[mickeymost]

Ann!

I too had gotten my period back after chemo, even though I was on Tamoxifen. I was only 35 at the time and was told that it was very likely because I was young. I have since had a hysterectomy, so that's that.

Waiting for my biopsy results, I should get a call by 5pm tomorrow.

I really need to go back to work, they've been telling me to take the time off to recover from surgery, but I have been through this so many times, this is nothing. Even if the results are not favorable, I plan to work through radiation this time. The last radiation wasn't bad for me, considering how chemo was. The oncologist has told me no chemo agiain though.

I will keep you posted after I hear.

Have a great day everyone

Kelly

 

[NHAnn]

Hi everyone! Gorgeous day here in NH!

Thanks for the b-day greetings!
DH gave me a digital camera for my b-day!! All I could think of was Linda's "pimple" e-mail to her medical team LOL HAve to sit and figure it all out now!
DD gave me a Yankee Candle gift card and some yummy papaya bath and body products (which are being saved for a post-radiation treat)

Amy... ....I cannot help with your question, I had a total hyst several years ago. My onc thinks that is just dandy since I won't have the endometrial side effects of Tamoxifen. I can sympathize with the heavy period issues though...that was one of the reasons for my hyst...but when dermoid cysts were discovered on my ovaries, it was a no brainer to get it all the plumbing out!

 

[Dan Murphy]

Just stopping by to say hello. Hope all you ladies are doing well, chugging along just fine.

 

[Amy]

Happy Birthday Ann! Here's to many, many more happy, healthy years ahead!!!

Amy- I had one like that between my first and second chemos, it was awful. I was 36 yr old at the time. They put me on Lupron and I stayed on it for 3 yrs and was in chemopause the whole time. After I stopped (I hated the side effects) it came back about 3 months later and I've had it ever since. I took Tamoxifen for 5yr and have finished that. I'm considering having an oopherectomy so I can take Arimidex. I'm going to look into it more in the fall, right now I'd like to just enjoy my summer! HTH

laurabelle - you were on Lupron for 3 years? What kind of side effects? I'm hoping once my blood test results are in Lupron will be all I need. I don't want to go thru this ever again!

Luckily, I think things are slowing down - I've actually been able to go about 2 hours without a trip to the bathroom today. This is HORRIBLE!!!

One good thing: we got back from WDW/USF on June 27, and my period started on July 6. I'm just so happy it didn't start on vacation and ruin my trip!

 

[laurabelle]

Amy-Yes and I really hated it. Here's the short list of side effects...I've noted the ones I suffered...


Lupron™ (leuprolideacetate), which has caused a range of problems reported to the Food and Drug Administration(FDA), including rash, vasodilation (dilation of blood vessels causing a “hot flash”), paresthesia(sensation of burning), tingling, pruritis (itching),headache and migraine, dizziness, urticaria (hives),alopecia (hair loss), arthralgia (severe joint pain, not inflammatory in character), dyspnea (difficulty breathing), chest pain, nausea, depression, emotional instability, loss of libido (sex drive), amblyopia(dimness of vision), syncope (fainting), asthenia(weakness), asthenia gravis hypophyseogenea (severe weakness due to loss of pituitary function), amnesia(disturbance in memory), hypertension (high arterialblood pressure), tachycardia (rapid beating of the heart), muscular pain, bone pain, nausea/vomiting, asthma, abdominal pain, insomnia, swelling of hands, general edema, chronic enlargement of the thyroid, liver function abnormality, vision abnormality, anxiety, myasthenia (muscle weakness),and vertigo.

 

[laurabelle]

Just stopping by to say hello. Hope all you ladies are doing well, chugging along just fine.

Hi Dan! I hope you and Marie are having a great summer!

 

[snappy]

Amy-Yes and I really hated it. Here's the short list of side effects...I've noted the ones I suffered...


Lupron™ (leuprolideacetate), which has caused a range of problems reported to the Food and Drug Administration(FDA), including rash, vasodilation (dilation of blood vessels causing a “hot flash”), paresthesia(sensation of burning), tingling, pruritis (itching),headache and migraine, dizziness, urticaria (hives),alopecia (hair loss), arthralgia (severe joint pain, not inflammatory in character), dyspnea (difficulty breathing), chest pain, nausea, depression, emotional instability, loss of libido (sex drive), amblyopia(dimness of vision), syncope (fainting), asthenia(weakness), asthenia gravis hypophyseogenea (severe weakness due to loss of pituitary function), amnesia(disturbance in memory), hypertension (high arterialblood pressure), tachycardia (rapid beating of the heart), muscular pain, bone pain, nausea/vomiting, asthma, abdominal pain, insomnia, swelling of hands, general edema, chronic enlargement of the thyroid, liver function abnormality, vision abnormality, anxiety, myasthenia (muscle weakness),and vertigo.

All I can say is WOW!

 

[Mom2Ashli]

Amy-Yes and I really hated it. Here's the short list of side effects...I've noted the ones I suffered...


Lupron™ (leuprolideacetate), which has caused a range of problems reported to the Food and Drug Administration(FDA), including rash, vasodilation (dilation of blood vessels causing a “hot flash”), paresthesia(sensation of burning), tingling, pruritis (itching),headache and migraine, dizziness, urticaria (hives),alopecia (hair loss), arthralgia (severe joint pain, not inflammatory in character), dyspnea (difficulty breathing), chest pain, nausea, depression, emotional instability, loss of libido (sex drive), amblyopia(dimness of vision), syncope (fainting), asthenia(weakness), asthenia gravis hypophyseogenea (severe weakness due to loss of pituitary function), amnesia(disturbance in memory), hypertension (high arterialblood pressure), tachycardia (rapid beating of the heart), muscular pain, bone pain, nausea/vomiting, asthma, abdominal pain, insomnia, swelling of hands, general edema, chronic enlargement of the thyroid, liver function abnormality, vision abnormality, anxiety, myasthenia (muscle weakness),and vertigo.

Very interesting. I just had surgery on Wednesday and found out that my problems are from Endometroiosis. One of the drugs that they have on the market for Endometroisis just happens to be Lupron.

I was approached about being involved with a Research Study for a new drug they are trying to fast track to the FDA. Hopefully it will be better than Lupron.

 

[Amy]

YIKES!! Those side effects of Lupron are scary!!

Got the results of my blood work from my gyne today: I'm no longer in menopause, my ovaries decided to wake up and start working again. He's going to fax the blood work to my oncologist and we'll see what she wants to do about my meds. She always told me you have to be post-menopausal to be on Arimidex. Maybe I'll go back to Tamoxifen? Maybe she'll want to give me a shot of Lupron? (You can bet I'm going to ask about all those side effects before I get the shot!!)

Meanwhile, I'm about done with my 4th box of super-plus tampons since Thursday. Yuk! DH is being very supportive - he even braved the feminine hygiene aisle to replenish my supplies.

 

[snappy]

Very interesting. I just had surgery on Wednesday and found out that my problems are from Endometroiosis. One of the drugs that they have on the market for Endometroisis just happens to be Lupron.

I was approached about being involved with a Research Study for a new drug they are trying to fast track to the FDA. Hopefully it will be better than Lupron.

Glad you finally got your diagnosis. Hoping you can avoid the Lupron side effects. There has got to be a better drug or therapy, IMHO. Is further surgery an option for you?

 

[mickeymost]

Okay ladies, I need some help here.

Just got the call from the surgeon and the results are not in yet. He said they had to do immunostains. Does anyone know what they are? He told me when they usually do these it is not good news, usually means carcinoma ( here we go again!) He said he would call me tomorrow with the results, but in the mean time I could go insane waiting. I really hoped to never be in this situation again. I don't know it the immuostains were something that was done the first time around and he said my chart was not in front of him so he wasn't sure.

I guess I need to prepare myself for the worst, AGAIN!!!

Any insight is appreciated.

Kelly