chemo, tamoxifen, sleep, sex and all that jazz......

[Ninja]

We went to the our new doctor's surgery after moving house and each had an appt with practice nursie.

I mentioned that chemo had caused the problems outlined in earlier posts and mentioned that I'd heard about Replens. She told me that I can buy it in Tesco.

That was it for "advice", not even a script. Is it available in a script? That would save me money.

Was there a further thread that mentioned other lubes? What's the advantage of Replens over (say) KY?

[Guest user]

After reading all your posts I just wanted to add that I read that testosterone can help with libido, whether its safe with e+ bc I am not sure but will be asking at next onc app.
Having just finished 6 x tax for secondary bc and dreading going back on zoladex and tablets as now in new relationship!!

[ChoccieMuffin]

Bump, as this topic's mentioned again and this thread might be interesting reading.

[sheil]

SGL,
We keep popping up on the same threads. Think you may be a long-lost sister. I liked Frances' comment - the thread disappearing - just like sex. Oh sheesh, I'm just wondering when these aromatase inhibitors are going to turn me into a man! I was having quite a nice wee thing going, new husband three years ago, then this. I even went on HRT thinking I'd prolong it, but there was my downfall, or part of it anyway.
Would be interested to know if anyone's got any 'topical' solutions.
S

[Guest user]

Just bumping this up!

[Guest user]

Thought this thread had disappeared like sex....
Interesting time today when at clinic for research study I'm part of for Capecitamine and Vinflunine. Vinflunine is a new drug developed by a French company and they are funding the trial. Several questions on the questionnaire about my current attitude to sex and recent participation as well as questions on my body image etc. Am wondering if these questions are part of any research studies that are British in origin or are the French actually more aware of the importance of sex and these psychological issues?

[CheshireCheese]

Well? Having popped over to Google Kegel exercises hasn't anyone got any results to report? Only joking - as you would imagine, it takes at least a few weeks of regularly doing the exercises before it makes a difference. I found that it was a good idea to make it part of my regular routine - for example doing some whilst driving the boring straight 3 mile stretch on the way to work. Or following on from Rhian's comments, perhaps practice a few whilst putting the washing out!
Sarah x

[ChoccieMuffin]

Rhian, you're fab! From orgasm to washing in half a sentence!

[Guest user]

Me too:) !!!

[Guest user]

just popping over to google 😉 xxx

[CheshireCheese]

Also try Googling Kegel exercises - designed to improve blood flow to the area and no gadgets required. Usually recommended by sex therapists for people having sexual problems, both men and women.
Sarah x

[Guest user]

''100 questions and answers about breast cancer, sensuality, sexuality and Intimacy ISBN 978-0-7637-7909-2''.

xxx

[Guest user]

Hi folks

Thanks so much for your responses and encouragment. I will track back to Rhian's posting of 31 March and check out this book. It is so much better when I feel 'less alone'.

Thanks again, J.

[Wandy]

Hear hear Moorcow!! I'm with you.
Does the government know about you Rhian??!

Wandyx

[moorcow]

Rhian, you are fabulous, could you perhaps become a sexual health adviser to all our teenagers???Nicola

[Guest user]

Tina, Jaynek and all ,
I found the book so informative and it made me realise that how i am feeling about intimacy and sex is normal after BC and the various treatments. Its an american publication so bear that in mind. I took a list of the topical hormone creams down to my GP who is very supportive and he went through his 'medication book' to see what was available in this country ( I am 3xneg so can use hormone creams). The other enlightening bit of knowledge was about the blood supply to the whole lady garden area and it is because of the lack of the blood supply that the skin becomes thinner and in turn we get so sore. The bit about using other forms of stimulation to encourage orgasm and get the blood supply flowing I am sure is another vital point. Use it or loose it seems to be the message I got from what i read. I know many don't like the thought of 'gadgits or toys' but the are many discreet little items out there, its not all great gyrating stonkin rubber truncheons. There is one called LELO Elise from Exclusively Eve ( on line) and Anne Summers do a whole range of smaller vibrating little gismos that have the intention when used to make you orgasm ...and it's the orgasm that gets the blood flowing ......oh dear think i need to stop now all this explicit talk at 2 in the afternoon. off to get the washing in

r xx

[Tiny_Tina]

Thank you to Rhian for her post on 31st March, have just ordered the book you recommended.
Hi Jaynek, I am on Tamoxifen and having the same problems, I really feel I'm losing my femininty and am desperate to claw some of it back. Refer to Rhian's post on 31st March, as I say I've ordered the book, will post again when I receive it.

Tina
x

[moorcow]

Hi J I'm bumping this up for you, cheers Nicola

[Guest user]

I posted on another thread re. this earlier, however would appreciate any advice anyone can give me. I had a hysterectomy 9 yrs ago with ovaries removed and now following bc diagnosis Aug 2010 I am on Letrozole with will effectively stop all oestregen production in my body. My OH and I tried to have a 'love session' last night! It has taken me weeks to pluck up the courage, and the desire, and it was a disaster. So sore............. Having read some of the other posts I am now really concerned about my sex life. I am 50 with my OH 46. I really don't think he has any idea of this aspect of problem although he has been marvelously supportive and put no presssure on me at all. However, I have been able to read his eyes and know he yearns for that part of our relationship to return to 'normal'. I fear for what this will be............I have had no advice, support or guidance from any health care professional about how I can resume my sex life. Just something else to add to the mix of 'lost femininity'. Sorry for sounding so down. Some of the other postings have really made me laugh!

Look forward to any advice going! J.

[Wandy]

Bit of smiling going on here too!!

Wandyx

[Guest user]

:))))))))) this so made me smile Wandy ;))))

[Wandy]

Not having chemo..yet.... Haven't started tamoxifen.... yet...Not getting much sleep but have been having sex!!! Wooo hoooo!!Pain levels from final surgery subsided enough to be interested in a bit of jiggy jiggy with the OH, so we did....all that jazz!!

Wandyx

[ChoccieMuffin]

Bumped thread for a new poster.

[moorcow]

Hey Lisa anbd CM, this lesbian poster thinks they have gone to a lot of trouble to use non gender specific language so thats a really good start - shows thought has gone into it all. Good for them for putting money into this,
bw Nicola

[Lisa_x]

CM- There is no specific reference to lesbian, gay, bisexual or transgender in the article and there's no reference to heterosexuals either.

Quote 'service for both male and female patients and their partners'.

I read that as inclusive of all, regardless of sexuality but not sure how lesbian posters feel about that?

Lisa

[ChoccieMuffin]

Thanks for posting that, Lisa. For the benefit of our lesbian posters, is the article aimed only at heterosexuals or is there any reference to lesbian, gay, bisexual and transgender people?

[Lisa_x]

Hi Ladies,

I picked up the Royal Marsden magazine when I was at the hospital yesterday and there was an article that I think you might be interested in. Unfortunately, I can't find an e version so I can't put in a link so I've copied some snippets here:

The patient and carers advisory group spooted a gap in the Trust's services, namely a lack of structure support for patients who are experiencing sexual difficulties following cancer treatment (it hasn't acknowledged whilst we are recieving treatment but it's a start!)
As a result, the Trust has employed the hospital's first psychosexual therapist, who is now offering a sevice for both male and female patients and their partners.

Dr Isabel White says 'At The Royal Marsden, as well as providing physchosexual therapy for patients and their partners, I am also auditing existing services at the Trust and looking at how patients who need help are currently identified and are referred on for treatment. I will use that information to help design a service that links different elements of sexual recovery together and hope to offer physchosexual therapy as part of the overall survivorship and rehabiltation services.

She also hopes that she will be able to help clinicians talk to patients about sexual recovery, recognise people who need further help and identify what next steps would be beneficial for these patients.

It's still disappointing that the focus is on 'After Treatment' and doesn't include 'whilst undergoing treatment but it's a start!

Lisa

[maude]

Hi Karen

I experienced exactly the same light-headed feeling as you but it was only for the first four weeks that I started taking Tamoxifen. It did go away after that though. I found going for a walk (even just a short one) helped while I was having the symptoms.

Good luck
Maude xx

[Guest user]

I have been on Tamoxifen for 8 weeks now and apart from the hot sweats at night increasing and one little 'niggle' (explain later in post) I haven't really noticed any other changes, especially with my 'lady bits'. I too was worried about the dreaded dryness and soreness I'd read about but to date (and I know it's still early days)all seems to working very much as normal. I also went for my annual smear yesterday (yes annual, the big C is after me one way or the other!)and the Nurse had no problem with the procedure.
Now then, the 'niggle' I mentioned earlier. I have been feeling very light-headed this past two/three weeks and at times it's like I'm drunk and have a hard time focusing. I was on anti-inflamotory tablets because I aparently damaged my tendon - don't know how? but maybe I WAS drunk on that occasion! Lol and thought it was them having that effect on me, but not been on them for a week now and today I got out the car at Tesco and had to really concentrate to walk into the store. Is this a side-effect of Tamoxifen? and should I mention it to the Onc next week when I go for my mammogram?
I don't know! if it's not one thing it's another.
JUST GIVE ME MY OLD LIFE BACK!

Karen

[Nottsgal]

First tamoxifen today. We'll see what happens.

OH and I continued with sex during 3rd (good) weeks after FEC and I wonder if this has helped keep things(!) functioning for me. But of course this could all be undone by tamoxifen and RADs.

[TSR]

Not posted for a while, but then, have nothing to report!

Sigh.

[Guest user]

Ah but then I have finished Chemo n Radio.....and we all have a life post treatment! xx

[Nottsgal]

I read your link, LiF and towards the bottom was this 'Oncologists generally advise against the use of antioxidant supplements during cancer chemotherapy or radiotherapy because they might reduce the effectiveness of these therapies by inhibiting cellular oxidative damage in cancerous cells'.

I am still confused and fed up because there seems to be no consistent clear information on what is and isn't recommended. I'm not a scientist and I don't understand a lot of the technical stuff. Can't somebody publish a clear pamphlet saying if ER+, then avoid using this, this and this?

[Guest user]

Hi Lostinfrance
My view entirely. OH and I were watching news recently when there was announced that something that previously declared very bad for our health had suddenly become good. OH sighed and said " If we live long enough I reckon that they will declare smoking good for you eventually"
Everything in moderation and sometimes you just have to take a chance.
Happy Days
Chinook

[Guest user]

Notsgirl....yes it does but then again it also talks about not using magnetic therapy nor soy products! I enjoy the odd chineese meal, my OH makes fab stirfry...with plenty of soy sauce....do I avoid it? Magnetic therapies are used my many for arthritis....do I avoid these if I get it?
I don't take it by mouth but only use it topically and reading here http://ods.od.nih.gov/factsheets/vitamine/ there seem to be few links with vit E and cancer if any!
I for one want a good healthy quality of life, a sex life, a good happy marriage and I don't want to live in fear of what 'might' happen, after all there is no certainty of keeping recurrance away even by following religiously every instruction, do and don't. After all eating a good healthy diet is part of good living....and sometimes taking responsibility for ones own life has to be done!
So far I and my daughter who has also been affected by this refuse to be frightened get on with our lives and LIVE!

[Guest user]

Peachez,

I think I got such a drastic reaction from oopherectomy because beforehand I had an incredibly high oestrogen level,Even Whilst I was on zoladex, my ovaries were still producing high amounts, thats one of the reasons I went for the op, so when they were removed,my body's reaction from very high levels of hormone to zero was drastic. Although to be honest, this atrophy thing didnt really kick in for a year and a half after starting Femara and the op.

I'm really confused and uncertain about the topical hormones, when I saw a gynaecologist, he seemed to think that it was ok, whilst my oncologist has said a definite no!
Ive tried to research as musch as I can on this subject, and whilst it seems that in the US,many many women with hormone sensitive BC are being prescribed topical oestrogen, in the UK Doctors are being more cautious, my onc said that these severe menopausal symptoms are only just starting to be addressed because the Aromatase Inhibitors are fairly new drugs and therefore their long term effects and treatments of the side effects are not really known at this present time.

So whilst I really would like to say yes to an oestrogen cream that would end all my problems, a part of me asks myself, why did I go to the trouble of removing all oestrogen from my body, only to add more? because there have been many studies done to evaluate all the different forms of oestrogen, creams, pessaries rings etc and with each method it has been found through blood monitoring that oestrogen is systemically absorbed into the body, albeit in different levels and for different durations of time, what no one knows is for how long and how high a level of oestrogen is needed for cancer cells to re-establish.

For a lot of women its a really high price to pay, quality of life versus survival, I so wish that there was a middle ground and I'm sure in a decade or so when the full effects of these new life saving drugs are realised, some boffin somewhere will come up with the exact amount of hormone we can have safely, then I got to assume its all guesswork.

Im seeing my Onc for my 3 monthly check in May, so will ask again, as he is very interested in anything thats going on in the US and is quite up on anything new, in fact he told me about a vaccine that is going through trials at the moment in the US that will prevent women from getting Urine Infections! I got all excited about that, but he said Alas, it wont be available there for another few years and over here maybe even 10 years, huh!

pm me if you need any more info Peachez
SS

[Nottsgal]

Sorry LiF but Vitamin E may not be a good idea. This is the guidance from NICE "Vitamin E is not recommended for the treatment of menopausal symptoms in women with breast cancer." This is the page I got it from: http://www.nice.org.uk/usingguidance/donotdorecommendations/detail.jsp?action=details&dndid=364

Still looking for advice on what we can use.

Confused and fed up

[Peachez]

StillStanding: could you have a topical cream with a very small ammount of hormone in it? would it be worth asking for a referal?

I am very interested in what you have reported, my ovaries were taken out at hysterectomy two years ago, and I am promised Femara for five to ten years by my Onc... will be very interested to hear if you make progress!

[Guest user]

I'd like to say a big thanks to the ladies who responded earlier on in the thread to me, great suggestions about the antibiotics and Vit E, but unfortunately have tried all of those and the main problem for me is not dryness, I could cope with that, its the worsening atrophy of the inner and outer vaginal walls and the atrophisation of my bladder and urinary tract which is caused by zero oestrogen.

To explain, if i was out and about and after visiting the toilet,used loo roll that was a bit rough, then skin will be rubbed off my bits and I will bleed, if I walk too far and havent used the steroid cream on my bits then skin will also scrape off due to the friction. last time I went for a smear, the nurse couldnt insert the speculum due to the vaginal walls having closed in.

This is all very rare gals and can only happen if youve taken the radical step of having your ovaries removed and are on Aromatase Inhibitors, Femara being 98% effect at removing any oestrogen produced by other organs in the body.

So really my experience shouldnt have been put on a Tamoxifen/zoladex thread as their effects are completely different, Tamoxifen doesnt remove oestrogen, just stops the body using it to fuel potential cancer cells, zoladex doesnt remove 100% oestrogen as it works on the ovaries, not the other oestrogen producing organs in the body, thats why Tamoxifen isnt as hard on the old bones as AI's as with Tamoxifen there is still the reserve of oestrogen to be used where its needed in the body.

There, Ive droned on long enough, lol

I knew well before I took the decision of oopherectomy the predicted outcome, but with my dire prognosis felt I didnt really have much choice, so really I shouldnt moan as Im still here almost 3 years later, albeit without the use of my lady bits, lol

made me chuckle hearing your stories, onward and upward girls and may the earth move for you all frequently, haha

[CheshireCheese]

Hope I'm not asking for TMI here, but does EVERYONE suffer with the famous dryness if they're on Tamoxifen and/or Zoladex? It's listed as a possible side effect for both drugs, but is it just that those posting here are the ones who are suffering the most and others who are doing fine are keeping quiet? I ask because it might be useful for others reading on here to know that it doesn't always cause dryness.

[Peachez]

Colly, can you ring your BCN or pop into your GP?
I asked my BCN at the start of Chemo as was never intending to stop (even though at 52 with OH ten years older it seemed assumed that we were well past all that!) and she handed a huge handful of sachets called "YES" lubricant over while trying to keep her eyebrows on they had gone so high!! Some of them are oil based, others water based (prefer the oil ones personally). They are additive/nastie chemical free.

[Guest user]

Cor you do have to laugh eh!.....I'm getting quite an education since dx!
The Mrs potato head look does go and I have to say I'm looking and feeling more human. Can I mention the vitamin E capsules again? and some stuff called pjur both of which seem to relieve the tamoxifen induced dryness/soreness completely...give it a go girls!!! and I mean as a normal treatment such as you would hse skin cream elsewhere....bl##dy marverlous! Makes me personally feel loads better about myself which is having a knock on effect on OH.....we are both smiling more.....etc

[Guest user]

Maude, I think you have just come up with the first decent explanation I have heard of why prosthetic breasts have nipples... it's obviously for wearing with a peep hole bra!!

Thank you for resolving that query in my mind.

xxxxxx

[Guest user]

Hi I finished my rads in jan and chemo in oct, Im on Tamoxifen and been haveing some vaginal dryness, last time we tried to have sex it was agony and I think it gave my oh a bit of a fright, now I feel he doesnt push it as he;s scared he hurts me, anyone got any good ideas? I know he loves me and thank goodnes still fancies me but just feel if we dont do it soon, it will never happen. is this length of time normal to wait?

[maude]

About six months after my mx I felt like I had come to terms with the dx and having one breast, I had spent time sorting out underwear/breast forms but the last hurdle was resuming our sex life. I decided to broach the subject with my OH and tried to explain how I felt. I told him I was finding it difficult to initiate sex with him (he wasn't initiating it with me), was worried about "getting naked", didn't know what to do about the remaining breast - do we just ignore it? - etc etc. I got a bit upset and had a cry. He gave me a cuddle and said not to worry. A couple of months later we still hadn't had sex so I brought the subject up with him. He looked a bit confused and said "Well, a few months ago you were talking about sex and you said you didn't want to do it anymore and you got upset so I haven't bothered". Hello?? I think we must have been having two different conversations! The sex has never really resumed properly but I am putting it down to me being menopausal and my OH being stressed at work - I hope I am right!

On a lighter note, a month or so before my dx we had a naughty weekend in the lakes and I bought a peep hole bra. On the way home from one of our consultations after dx I said to my OH "I don't suppose I will need my peep hole bra anymore" We got a bit silly and decided to sell it on ebay. Then we got sillier and started thinking how to advertise it, we decided on "Ann Summers black peep hole bra - used once". For some reason we both found that hysterical and cried with laughter (or perhaps we just cried!) I never did sell it on ebay, I put it in a charity bag.

Love
Maude xx

[Peachez]

Oh my, teenagers! Have to check if she came in last night as to whether it's ok to walk around naked ( before chemo )!! Now that youngest is off to Uni in Sept, Eldest wants to come back home after Graduating... Arrrgghh!!

SB, what a laugh! They're going to find out somehow if they want to, probably scared himself and ran off without clearing the search. I remember putting on what I thought was a childrens video years ago, with the girls watching - to find my EX (soooo many reasons why he's my EX...) had hidden his porn movie in the case instead - we're talking blindfolds and unusual orrifices here... They survived and turned out pretty normal, so don't worry!!

[Guest user]

Sex?? I had completely forgotten what it was until the most mortifying thing happened... opened my ipad and happened to see that the last entry in google history was the word SEX... Now if you google just the word sex, the first hit to come up is a hard core porn website complete with video clips to watch... And we are talking full on graphic, make your eyes water kind of stuff...(thankfully i don't have adobe flash player installed, phew)
Well, it wasn't me who googled it, I know its been along while since i had any action but i'm not that desperate .. yet!
OH?? Hmmmm doubtful......
Oh God, oh no, it wasn't , was it??!!
Yep, my 8 yr old son decided he wanted to know what the word meant.. well now he certainly knows. In fact he knows more than his mother does...
And i now feel like a dreadful irresponsible mother...

[TSR]

Oh God Peachez, I hope so. It is really, really wearing.

Glad you and the hubby got your mojo back. If I can stay awake longer than 8.10pm, I might follow your example.
Of course, apart from the panto dame look, I also have teenagers, who seem to be equipped with 'sex radars.' Ooooooh, disgusting! Yuck, get a room....Well, kids, we have one, and you've just barged into it!

What a great aphrodisiac - quick, you've got half an hour before 'Glee' is over, get on with it....

[Peachez]

Well, the dog barked at 7.30 this morning so we were both awake.... had a laugh about me being like Mrs Potatoe Head, & one thing led to another. I'm feeling a good bit better now 😉

it doesn't take away the 'Panto Dame' in the mirror though, I keep staring in the mirror willing furiously for fuzz to appear on my head. And I don't like Hollywoods or Brazilians so apart from staying 'tidy' I'm never going near waxing once this is over, ever!

Do we ever get to feel 'normal' again ???

[TSR]

No, it's not just you Peachez. I'm sure it will come. Excuse the pun,
Tracey x