/well, its been a while since I have been on.....5 ops later, last one being a nipple placed on my "nude boob"quote from the plastic surgeon!!! Boob looks fantastic but ever since starting zoladex I have fallen into a heap!!! Now whilst it is known to bring on menopause I am finding it totally incapacatating and therefore have spent most of the last 6 months going back to bed under my doona, crying (even in the supermarket with no energy and motivation. Its tough to do basic things for the kids, but i do, usually whilst trying to hide tears! I hate the stuff and would prefer to one boob less...oncologist doesnt agree!!!! Any one else having problems with it? Any solutions? oh and then there are those rotten night sweats UGH!!!!, have tried a natural remedy for those.......may help a litttle. HELLLLLLLLLLLLLLLLLP!!!! best wishes to all!!! Off to an appt in city today in 38 degree heat.......but hey im still here....thats a plus.......but im a wreck......not so goood Cheers Kerry

Hi Kerry My name is Sandy and Daina, the online forum supervisor messaged me to ask if I could contact you with my exeriences with Zoladex. Probably a good thing as I dont check BCNA all the time! I had a one sided masectomy back in Feb this year. I commenced Tamoxifen but developed an ankle to thigh DVT so had to cease the Tamoxifen and start Zoladex in cojunction with Letrazole. Because I still have the DVT 8 months later they won't refer me for reconstruction for awhile and I am naturally impatient. Yep, those flushes, especially at night sure get me hot and bothered too. And I have now also got depression which sounds similar to you?????????? Lack of sex drive, overly emotional, and I don't 'feel' as I am the same person I was before all this. I am also absolutely terrified of a reoccurance. Medication has helped the depression enormously although I have been close to tears all the time in the last few weeks. Funnily enough, I coped with all the surgeries, chemo and radiation but have lost my bundle now I am supposed to get back to normal life. I feel like I am just waiting for the dreaded C to return! The Drs put me on Efexor (antidepressent) initially because it is said to help the hot flushes but now the dose is doubled and the flushes are a bit better. I find sweet, surgary or fatty foods REALLY set them off so if I eat lollies it serves me right. Also, Gabepentin or Clonidine may be effective, ask your Dr. My biggest complaint is that one of the drugs, Dr thinks it is the Zoladex gives me terrible achy pains all over my body, particularly the arms, feet, legs and hands. I feel like I have the flu all the time. And that really gets me down. I seem to take an enormous amount of pain killlers just to cope with daily activities and work commitments. And often heavy duty ones, but it is sometimes the only way I can cope! Sleep is another thing that eludes me these days! I feel exhausted but just cant either go to sleep or stay there! I returned to work after 12 months sick leave and have really found it difficult, mentally and physically. Don't forget that even if you had "no boobs" the Zoladex blocks the oestogen which in many cases is what 'feeds' the cancer cells, so by stopping it you may be putting yourself at risk. I do understand how you feel because I was so so so tempted to stop taking it myself a few weeks ago because of the constant pain, it hurts to walk, sit, lie, wake up, climb stairs, .......... so I do understand. Just focus on the bigger picture of blocking the re-entry of cancer into your body! I am more than willing to talk on the phone if you would like, email me for a phone number if you like. rosssandy@bigpond.com I live rural SA, what about you?? Hang in there Kerry, if I can do it, so can you! Regards Sandy

Hi Kezzababe, Sounds like you are having a really rough time with the Zoladex. I was told that it affects the hormones that regulate ovarian function- so the zoladex shuts down the ovaries, so hence the body is starved of oestrogen. Enter early menopause. The natural remedy would be to have your ovaries removed. I have a brochure "Breast cancer and early meonpause" from The National Breast and Ovarian Cancer Centre - (I think they are now part of Cancer Australia) . I found it quite helpful. There is a whole section on managing menopausal symptoms-eg coping with stress and emotional worries,hot flushes and night sweats, libido, vaginal dryness, insomnia and disrupted sleep and so on. I have recently finished a two year course of Zoledex. It is OK to seek help from your GP or Oncologist. My GP made a "Mental health plan" which enabled me to see a psychologist, who worked out of an Oncology unit. She was helpful in relieving some of the anxieties and fears that I had. She gave me coping stragies. She also had great stragies to help me sleep. I wasn't depressed but she felt I had a post traumatic stress reaction. Like Sandy I found certain foods and drinks made the sweats worse. Hot drinks, hot-spicey foods, caffeine and wine were the worst. I also stopped all foods with caffeine- coffee, tea, chocolate, soft drinks etc- this aided my sleeping. I have a very light doona in winter and an even lighter one in summer (which lies at the end of the bed). At one stage I went to bed with a glass full of ice. If I woke with a flush I would use the ice/cold water to cool me down quickly. But the thing that helped me the most was acupuncture. The flushes didnt go away completely but it made them bearable. My oncologist has since referred patients to him with good success. If you are in Melbourne I can pass on his details. 12 months into the treatment I was still suffering dreadfully from fatigue. I went to a naturapath- that had been recommended to me, and she felt I was Vitamin B deficient- she mixed up a potion- which really helped too. I have tried to use natural therapies- but i have also been cautious as to who I go to as I need to make sure they are not going to undo the work of the Zoladex/tamoxifen. I hope this helps. 38 degree days and warm nights are not helpful and not controlable. Control what you can-food, clothing, bedding etc. There is a Zoladex group on BCNA- if you do a search-there may be some more hints for you. Thinking of you Carolyn

Hi Sandy, thank you soo much for your response, would love to talk to you tried to email but it bounced, would you mind checking it? or mine is skittlesginga@yahoo.com.au (that is the name of the kids cats .....i am not really kooky) well the kids would say i am!!! thanks kerry

Thank you Carolyn! Yes I do live in Melbourne and am kind of desperate!!! I will ring and try to obtain the booklet re ca and early menopause......i too am increditbly fatigued, want to sleep all the time (with the help of stillnox which my gp is not happy about....) will try anything and everything. Would love to know the acupuncture specialist if you still have details. thank you soooooo much for your time and help. I do hope this finds you well. I wonder did you end up having your ovaries removed? Best wishes and thank you Kerry

Bloody Zoladex!!!! | BCNA Online Network

42 Replies

Anonymous
12 years ago
Hi Lynda,

So glad you have found BCNA and this post. You have so much going on in your life-and been through so much. You sound like you are a real fighter! And you are right that you have to do what you think is best.

All I can offer you is my story.

At age 48, was diagnosed with Grade 2 Invasive Lobular -hormone positive-breast cancer. My lesion was much smaller than yours and I chose to have a single mastectomy. The grade 2 was an important factor in my choices.

My Oncologist did the sums (they use a program with survival rate) and found that tamoxifen with chemo was the best outcome as per the program. However she was surprised that the chemo was so highly rated as the cancer was not fast growing( chemo attacks rapidly dividing cells). This may be why you chose not to have chemo (???). My Oncologist told me about zoladex- how it stops the ovaries producing oestrogen- and we decided to use zoladex (for 2 years) and tamoxifen. It seemed the best option.

The key with me is that we started them at the same time. I was propelled into menopause! so 4 weeks after the treatment started and 7 weeks after my surgery- I had a massive meltdown, and found myself very anxious and not coping. I did see a cancer pysch who felt I had post traumatic stress. I was also plagued with the menopause symptoms. But over time found ways to cope- acupuncture and dietary changes were the most successful. I was not diagnosed with depression.

This is nearly 4 years ago. I am so pleased with the choices I made. The fact that my body was not producing oeastrogen- and not reacting to oestrogen- I felt like I was doing everything I could to stop this hideous disease returning. As I am now post menopausal I have recently stopped taking tamoxifen and am on aromatase inhibitors. I feel very fortunate that I have been able to tolerate all the medications. Some women react poorly to tamoxifen and or arimidex and are unable to take them.

You have to decide what is best for yourself and your children- and live life with no regrets knowing that you have made the best choice with the information given.

Hope this helps in someway xo

Carolyn
sealmaiden
Member
12 years ago
Good morning everyone!

Thank you for your email Kerry. I sit here with my cuppa and reflect on your words...thank you, thank you. thank you for voicing your truth. Carolyn you said so much in in two little words..we come together together as women who do 'get it'. This morning I feel for my loved ones...I realise that at times I just simply scare 'pants off them'. And at times myself for that matter! Tomorrow morning I may cry and feel very angry with them...and not understand why they don't 'get it' and I expect them to hold the 'huge bag of stuff''that I just want to throw at someone. What ever! When I am in a space for it.... I see that bag has some pretty gorgeous, sparkling jewels in it and sometimes when I am not ...it it just concrete! I am just LIVING my life the best way I can.

Kerry I send you a huge hug of compassion for Monday. You inspire me and help me so much with your posts! Go girl......xx
kezzababe
Member
12 years ago
hey girls love to you all.

glad your tests were all clear sealmaiden!!!! how gorgeous and appropriate to get that red cyclamen......i may lash out too......

so true carolyn it is so goood to to be able to share with people that get it.....my two best friends are staying tommorrow night....they live in hobar t and bendigo so i dont see them often....they desperately want me to snap out of it and i am stressing big time i will be ganged up on.......in a welll meaning way....i need tlc and hugs not lectures about getting on with things im reallly stressed and it shouldnt be so...my hobart friend last saw my peak zoladex destruction......i was a mess......i am getting it together slowly, my way and have stopped zoladex...ovaries out monday........this is not something we planned hey and i dont like what it has done to me........i seee a bizillion doctors to try and lift my game..........and its happening slowly......i have told them i dont want lectures but fear i will get it anyway......

go girls, love and best wishes to you all kerry.xx
kezzababe
Member
12 years ago
hey girls love to you all.

glad your tests were all clear sealmaiden!!!! how gorgeous and appropriate to get that red cyclamen......i may lash out too......

so true carolyn it is so goood to to be able to share with people that get it.....my two best friends are staying tommorrow night....they live in hobar t and bendigo so i dont see them often....they desperately want me to snap out of it and i am stressing big time i will be ganged up on.......in a welll meaning way....i need tlc and hugs not lectures about getting on with things im reallly stressed and it shouldnt be so...my hobart friend last saw my peak zoladex destruction......i was a mess......i am getting it together slowly, my way and have stopped zoladex...ovaries out monday........this is not something we planned hey and i dont like what it has done to me........i seee a bizillion doctors to try and lift my game..........and its happening slowly......i have told them i dont want lectures but fear i will get it anyway......

go girls, love and best wishes to you all kerry.xx
kezzababe
Member
12 years ago
hey girls love to you all.

glad your tests were all clear sealmaiden!!!! how gorgeous and appropriate to get that red cyclamen......i may lash out too......

so true carolyn it is so goood to to be able to share with people that get it.....my two best friends are staying tommorrow night....they live in hobar t and bendigo so i dont see them often....they desperately want me to snap out of it and i am stressing big time i will be ganged up on.......in a welll meaning way....i need tlc and hugs not lectures about getting on with things im reallly stressed and it shouldnt be so...my hobart friend last saw my peak zoladex destruction......i was a mess......i am getting it together slowly, my way and have stopped zoladex...ovaries out monday........this is not something we planned hey and i dont like what it has done to me........i seee a bizillion doctors to try and lift my game..........and its happening slowly......i have told them i dont want lectures but fear i will get it anyway......

go girls, love and best wishes to you all kerry.xx
sealmaiden
Member
12 years ago
Woo hoo! The blood tests were clear. Relief, relief! I was extra nervous for some reason this time around. I bought myself a red cyclamen that looks as if is it about to jump out of the pot with vitality.

Thanks Carolyn for your comments. Our BC sisters do "get it"....I find it so helpful to voice my fears and celebrations on this site. It took me three years to connect out and I am so glad I did.

Wishing you all strength and love. xx
sealmaiden
Member
12 years ago
Woo hoo! The blood tests were clear. Relief, relief! I was extra nervous for some reason this time around. I bought myself a red cyclamen that looks as if is it about to jump out of the pot with vitality.

Thanks Carolyn for your comments. Our BC sisters do "get it"....I find it so helpful to voice my fears and celebrations on this site. It took me three years to connect out and I am so glad I did.

Wishing you all strength and love. xx
Anonymous
12 years ago
whilst in hospital recovering from my mastectomy and reconstruction, I was visited by the doctor I work for. He declared " Carolyn you are now cancer free!" I thought about it and all the results showed exactly that. The lesion was gone and the sentinal nodes were clear. This was three years ago.

But it doesnt feel like that. I agree that the journey has ups and downs. Every blood test and every surgical review brings anxiety again. Changes in treatment, additional treatment, questions about having double mastectomy or ovaries removed, results of current research and the list goes on.

It is so good to have a community of BC sisters that we can share with and they "get it". xo
sealmaiden
Member
12 years ago
My bloods results are due tomorrow...eeek! Thinking of you and your tests. My ovaries are in consideration too. I have to wonder if modern day sacrifice gives us brownie points like the olden days? I am hanging onto the shreds of my humour by the finest of threads some days! At least we are not alone with this. Connecting with my world of brave woman does help. x
sealmaiden
Member
12 years ago
Hi Kerry, I have just read your post and I am sending you loving thoughts. Your past posts have helped me so many times. Thank you for being so beautifully honest and sharing your journey. Hang in there girlfirend! And know that you are not alone with the depression. After my last reconstruction surgery in nov I expected to feel the same way as you. However much to my surprise I hit a rock bottom and also felt that not so lucky, lucky feeling. I have reflected on this and I have come to realise that the surgery, general anaethestic and past surgeries bring lots of painful stuff up. This perspective did change and the sun rose again. This was such a surprise to me that I have written in my diary to remind myself of these feelings so I feel normal and know that this time will pass. We are such brave women negotiating unchartered water and need to remind each other of this. Thank you for the opportunity to support you as you have me. Sealmaiden

xxoo