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Help, struggling with hormone therapy.

20 REPLIES 20
koshlake57
Member

Re: Help, struggling with hormone therapy.

Dear Kayak Jan

 

Give the Letrozole a try.  I have a friend who has been on it for 10 years with hardly any SEs.  I have been on it now 6 months and have joint pain.  The odd thing is that the more I exercise the less the joints hurt.  I play golf 4 times per week and go to the gym or swim on the other days.  The other thing I found in a hot tub while on a ski holiday this winter is that the heat of the hot tub is great.  I also take calcium and vit D as my bone density scan showed a small amount of ostopenia.  It is rather depressing that the cure causes so much pain but it will likely keep us cancer free.

Isabel70
Member

Re: Help, struggling with hormone therapy.

Hi Nic

 

Just logged in and found your very helpful advice.  Have just started Letrozole and am

now in my second week of radiotherapy treatment.

 

So far with the Letrozole I am just getting some constipation but it is early days.

 

Had a review with the radiologist today and she mentioned something to strengthen bones which

I couldn't get the name of.  However, you have just helped me out there with Adcal-D3 tablets.

 

I have had a bone density scan but as yet haven't had results.

 

Thanks for your tips.

Isabel

Anniewol
Member

Re: Help, struggling with hormone therapy.

Hi Jan

I am in my sixties and had a mastectomy last May and have been on Letrozole for 8 months.  I had a bone scan, my Doctor had to chase for the results and eventually got them, I have oesteophelia - which is one below Osteporosis - but I take a calcium tablet each day and my Doctor is going to send me back for a scan next year to see if there has been any change.  I have the aches and pains as SEs and just control these with pain killers when necessary and still manage to play golf and do lots of gardening,  the hot flushes are not the best but with help of Clonidine they are manageable. WOuld rather put up with the SE's than they thought of the cancer returning.  Just coming up for my first year check up - bit nervous but convincing myself everything will be okay

x

jiggyjoo
Member

Re: Help, struggling with hormone therapy.

Hi Jan,

I am in my sixties and have been on Tamoxifen for 4 years. I do have side effects but nothing I can't cope with. I had Dexa scan at end of treatment and discovered I had Osteoporosis. I have yearly infusions and take Adcal. I have no side effects from infusions - so much better than weekly tablet which made me ill. I guess I might be lucky but I have put no weight on with Tamoxifen. I am very active and go for long walks with my dogs every day. I also have 2 horses and ride whenever I can.

I'm sure you can request a Dexa scan if you are not offered one routinely.

Good luck!

Kayak Jan
Member

Re: Help, struggling with hormone therapy.

Hi all
Thanks for all the information and advice ladies. I will keep following the hormone threads. I feel better informed and have more questions to ask. Not sure I am any near to being able to make a decision. I already take prescribed medication for vitamin d deficiency so am really worried about bone issues. I was not aware of the iv treatment so that might be the deciding factor.
Thanks again for all the input.
Jan
Ruthiesings
Member

Re: Help, struggling with hormone therapy.

I'm fascinated about how we all react so differently to Anastrozole.  I'm 58 and have been on it since last June.  My biggest problem is the hot flushes and occasional muddled brain! I've had no joint pain but I do Pilates and my bone scan showed me only at medium risk of osteoporosis so just making sure I continue with plenty of milk, yoghurts and cheese. What time of day do other people take their Anastrozole? I take mine last thing at night and wonder whether this has any bearing on s/e?

Cesrabbit
Member

Re: Help, struggling with hormone therapy.

Hi Jan. I'm 55 and was given the choice as post menopausal. My Onc said to me "you have two choices Tamoxifen and weight gain, Or Anastrozole and joint/bone pain. As I'm vain, I decided to go with Anastrozole and was given a DEXA scan which showed I had thinning bones so was prescribed Adcal too. I have had no SEs from Anastrozole apart from feeling tired in afternoons. I walk two miles every morning so maybe that alleviates any joint aches. My friend is on same drug and she can't walk down stairs without feeling terrible! It's strange how it all affects us differently.I have another friend who's come off Tamox because of weight gain...but another one who's 3 years on it with no problems. Try them. Recurrences are more likely in the first two years with ER+ cancer so taking them for that long would probably be beneficial.
Wendyy
Volunteer

Re: Help, struggling with hormone therapy.

Hi Judi

I was having my rads November 14 and yes I remember you from then. It seems a long time ago but my recent blip has brought back loads of the emotions I was feeling then.

I was tolerating Tamoxifen and it's lovely s/e so hoping I'm the same on Letrozole. I have an appointment with my GP in a couple of weeks to review the DVT so I'll ask about the bone scan then. It's cruel isn't it that the drugs keeping us cancer free are such nasties in other ways.

Take care and hoping your next scan results are good

Wendy xx
ollisj6
Member

Re: Help, struggling with hormone therapy.

Hi wemblo I've been on letrozole for exactly a year and they did a dexa scan on my bones before I started which was fine I'm due another one but I must admit I feel about 80 some days my joints especially my shoulders ache I take a calcium supplement I recognize your name were you diagnosed November 14 I had lumpectomy/chemo/herceptin finished herceptin end of December love judi xxxx

Wendyy
Volunteer

Re: Help, struggling with hormone therapy.

Reading this thread has unsettled me. I've been on Tamoxifen for 18 months but had to stop it last week as I've developed DVT and theyre blaming the Tamoxifen. I went to my breast clinic this week and have been put on Letrozole instead. No mention of a bone scan although they did mention the risk of osteoporosis and therefore prescribed Calcium. Has anyone else started Letrozole without a bone scan?

 

Confused and worried. xx

Seren
Member

Re: Help, struggling with hormone therapy.

Hey Nic - thanks for the reply.

Yes, mine was recommended for hopefully some protective measure against bone mets further down the line. It is indeed the jaw necrosis that is the rare side-effect that was mentioned to me.  

My normal dental surgeon, who maintains my implants, didn't think I should be at greater risk though, as I had them put in about three years ago, so everything is healed now.

 

Thank you for the information, it has helped a lot.  :). xx

Nic
Member

Re: Help, struggling with hormone therapy.

Hi Seren - I've had 2 infusions so far, and I don't get any side-effects from the bisphosphonates. I have to get a blood test done a week before the infusion to check various levels, and then it only takes about 20 minutes for the infusion, so no problem for me.

 

I had read an article on the BBC website (late summer 2015) which said that it was a new treatment that could reduce the risk of secondaries - when I mentioned it to my onc he said that they'd been giving the treatment for a while and he'd already planned it for me.

 

I don't have any dental implants (yet!) but I was warned to get my teeth checked before starting the bisphos, and to remind the dentist each time I visit. My dentist said that any major tooth work would need to be done at the hospital. I think there's some rare risk of jaw necrosis (yuk! don't need that on top of all the other side effects of BC).  I schedule a dental checkup just before each IV session, and luckily have had no teeth issues so far.

 

I'm not sure how many years the bisphos treatment will go on for (keep forgetting to ask!), but as I have no problems with it then I'm glad of anything which might reduce the risk of secondaries in the bones.

 

Good luck, Nic.

Seren
Member

Re: Help, struggling with hormone therapy.

Hi Nic - just noticed you mentioned you have a six monthly bisphosphonate IV - something that my Oncologist has mentioned to me.  Have you had any SEs from this?  Also I don't suppose you have any dental implants do you?  I do and I have to get approval for this treatment from my Dental Implant surgeon to go ahead because of a rare side effect.  xx

Nic
Member

Re: Help, struggling with hormone therapy.

Hi Jan,

I've been on Letrozole for 7 months now and luckily have had no side effects so far other than a couple of months of trigger thumb (which may or may not have been due to the Letrozole, and is now getting better without any treatment). Hopefully you will also be lucky. I suspect that you dont hear much in forums from the people who have no problems, so you get a slightly biased view when looking at all the problems reported in the forum.

 

I was given a Dexa scan to check bone density before starting Letrozole to use as a baseline for treatment - I didn't get a score, but was just told that there were no problems. I was told I would get another scan at some point during treatment to check that bone density is still ok.

I have also been prescribed daily Adcal-D3 tablets (calcium and vit d) to help strengthen bones. Every 6 months I have an IV infusion of bisphosphonates which apparently keeps bones strong and (hopefully!) deters secondaries in the bones.

 

So dont panic about the hormone therapy yet - it may well be fine for you.

 

Good luck!

Nic

 

Jill1998
Community Champion

Re: Help, struggling with hormone therapy.

They will take into consideration any existing health issues you have.Try not to worry too much ,most people have very manageable side effects.
Kayak Jan
Member

Re: Help, struggling with hormone therapy.

Thanks.
I really want to get as much info as possible so that I know the questions I need to ask and any scans etc
Jan
Jill1998
Community Champion

Re: Help, struggling with hormone therapy.

Yes ,pretty sure you can ask for dexa scan if you have bone issues already ,lady I speak to had one .The AI s are slightly more effective for post menopausal women but Tamoxifen is a definite option.Couple of ladies I speak to have been changed to it after issues with Letrozole etc
Seren
Member

Re: Help, struggling with hormone therapy.

Hi Jan - in theory you should have a DEXA scan before you start, that's what my BS told me.  Due to various delays I didn't but I've had one now, three months in (not got results yet).

So if you mention it, you should get it.  :). I was clueless at first.  xx

Kayak Jan
Member

Re: Help, struggling with hormone therapy.

Thanks Jill I didn't realise tamoxifen was an option for post menopausal. I knew you ladies would help. I now have something else to throw into the Dr questioning.
Does anyone know if you can request a bone scan. I really want to know the extent of the deterioration that has already been detected before I start .
Thanks
Jan
Jill1998
Community Champion

Re: Help, struggling with hormone therapy.

Hi Jan,best plan is to give it a go and see how you get on pretty sure most side effects (apart from osteoporosis) are not permanent and a lot of people don't have have side effects that majorly impact on their quality of life.You can take Tamoxifen post menopause too so if you find the AIs don't agree with you ask about trying Tamoxifen it is kinder on the bones and joints .
Kayak Jan
Member

Help, struggling with hormone therapy.

I am struggling with the prospect of hormone therapy.
I was diagnosed with grade 3 , 30mm multifocal lobular cancer, ER So far I have had successful therapeutic mammoplasty and am halfway through chemo. I know I have radiotherapy to come.
Until this all kicked off I was quite fit and very active. I am 61 and decided to take early retirement when I was made redundant. I loved kayaking, played racquet ball 3/4 times a week, did a couple of yoga, Pilates classes, rode my bike every where and worked on my very large garden. I attended a couple of craft classes and volunteered at a care farm every week. So busy and active.
My big problem with hormone therapy is the likely side effects, specifically the effect on my bones , joints and my general mobility. I already have a vitamin D deficiency and bone deterioration. My greatest concern is that I take hormones for 5 years and can't do what I really want. Then find after 5 years I have osteoporosis and joint problems. How do I make a decision about quality of life now against the chance of cancer returning.
If I start taking hormones and have problem side effects will they be permanent? What happens if I only take them for 2 years, why 5yrs? I know I need to talk to my oncologist but I have found the advice and experiences shared on this site invaluable. I will talk to the Dr but I want to be as prepared as I can be beforehand.
Thanks
Jan