Hi Mog,

I am sorry to hear about the side-effects that you've had with Letrozole. I started out with Tamoxifen 12 years ago, following a lumpectomy. A year later I discovered another primary cancer in the same breast and discovered that, despite the side-effects, I had not responded to the treatment. I then had a double mastectomy and changed to Letrozole. I found that my emotional state improved with this, but the joint pain throughout my body was more severe, to the extent that I had to have both knees replaced. Despite many side-effects, I took this for 6½ years.

Most of these drugs have their side-effects, although some seem to be worse than others.. Some people get no problems at all, so it is certainly worth trying. I do hope that Anastrozole works out for you. Please keep in touch and let us know. We are always here for you.

Kind regards,

Jolamine xx

Hi Mog,

I am sorry to hear about the side-effects that you've had with Letrozole. I started out with Tamoxifen 12 years ago, following a lumpectomy. A year later I discovered another primary cancer in the same breast and discovered that, despite the side-effects, I had not responded to the treatment. I then had a double mastectomy and changed to Letrozole. I found that my emotional state improved with this, but the joint pain throughout my body was more severe, to the extent that I had to have both knees replaced. Despite many side-effects, I took this for 6½ years.

Most of these drugs have their side-effects, although some seem to be worse than others.. Some people get no problems at all, so it is certainly worth trying. I do hope that Anastrozole works out for you. Please keep in touch and let us know. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine. Thanks for your response. I'm so sorry to hear your story and hope that things are OK with you now. I took my first anastrozole last Tuesday and it has been miraculous in that my joint pain just vanished by Friday! I don't quite believe it and am not going to get my hopes up as I know it may return but for now at least  can crochet again - and get the top off the milk! I'm struggling now with a nasty stomach virus, it seems as fast as I solve one problem another one comes to take its place but I guess that's life. Love and hugs, Mog

Hi Mog,

I am delighted to hear that you have noticed such a difference already - let's hope that it stays as good as it is. I am sorry to hear about your stomach virus and hope that this settles soon. I took Venlafaxine and it did help with the drenching night sweats - didn't stop them unfortunately, but reduced them. I still take it, as the night sweats have never gone away, even though it is now almost 5 years since I stopped treatment. I hope that this works for you too.

Kind regards,
jolamine xx

Hi Jolamine, thanx for your message. I think I may have been a little hasty in my reation that the switch had improved things as much as I initially thought. The joint pain has definately improved but I have had a couple of instances of spasms on my hand, like cramp but all my fingers go rigid. It's scarey. Also I am having a nightmare on the venlafaxine and am seriously thinking of stopping it. I just don't feel right in myself and I've also discovered that my tummy virus is actually the venlafaxine too. If it's not one thing, it's another. Cancer, the gift that keeps on giving! How did you manage 5 years of this? It's a bit worrying to hear that the side effects are still with you so long after your treatment ended. I had hoped that this misery would finally end in 4 and a half years from now but maybe not. Sorry to be such a misery, I've had a bad day and as I said I'm just not myself. Take care and thank you for being there, warm regards, Mog xx

Hi Mog,

You really need to give yourself about a month on Venlafaxine before it starts to work - also never try to stop it dead. If you are going to stop it, you need to reduce the dosage gradually, even if you are on the lowest does. If you don't do this, you will find the withdrawal effects horrendous. Your doctor can help you to reduce this sensibly. Have you been given anything to protect your tummy from your medication? I take Omeprazole, which lines the stomach and this makes a big difference.

We all have bad days and I am here for the bad and the good, so feel free to vent as much as you want - we've all done it ourselves. I am sorry to hear that your change in medication has not been as effective as you originally thought, but again, it can take a few weeks to take full effect, so give yourself time.

Taking Lerozole for six and a half years was no fun, but the benefit is that I am still here 12 years after diagnosis, so I consider the side-effects to have been well worthwhile.

Here's hoping that things improve for you soon. Don't forget that we are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine! Nice to hear from you again. Spoke to my GP today and we have decided that I stop the venlafaxine. I'd rather have the flushes and night sweats than what that drug was doing to me. Also I have been struggling with other symptoms from the lack of my old meds. I'm back the mirtazapine and hope things settle soon. I am going to get my oncologist to do the NHS predict for me as I'm really not sure that the damage the lack of oestrogen is doing to my body and the misery it's causing me is worth it for just a one or two percent increase in my chance of reoccurrence of cancer. The reason I'm not sure it's worth it is what it's doing to my hands. I've had several sudden cramps in my hand with my index finger triggering. So far I've been able to coax it back to normal but I'm worried that the next time the trigger finger will be stuck. Cancer has taken so much away from me and if it takes my ability to do any craft at all (already had to give up some of my finer crafting) my life will not be worth living. I guess I have to decide but I will try and give the anastrozole the full 3 months to see if things improve. I've just spent the day clearing out my big, walk in hall cupboard to give it a long overdue new coat of paint. I don't think it's ever been done in 50 years since the property was built! This is the first step in getting my craft room sorted out and decorated. It's very cluttered and the plan is for lots of stuff to move to the hall cupboard. I am not going to all this effort to not be able to craft! At least doing this project is taking my mind off my woes for a while. What are you up to this long weekend? I hope its something nicer than decorating a cupboard! Whatever it is I hope you have a good weekend. Happy Easter! Kindest regards, Mog

Hi Mog,

A Very Happy Easter to you too. I hope that you haven't spent all day working on your hall cupboard. This is a slightly warmer day than we have had for a while, so I have spent it in getting the garden prepared for the summer bedding plants. I also potted on a lot of Petunia seeds. I do find jobs like this quite fiddley now, as my hands are quite arthritic and the joints are quite stiff and swollen, but I'll keep going for as long as I can.

I'm glad to hear that you have spoken to your GP and have decided to stop the Venlafaxine and have gone back on to the Mirtazapine and hope that things are beginning to settle down for you. It is a good idea to have a  NHS Predict test to determine what benefit you'll get from treatment.

I hope that your cupboard is now looking pristine and ready to store a lot of your crafting stuff. I have just retired and have lots of jobs like this to keep me busy for quite some time. Please keep in touch and let us know how you get on.

Kind regards,

Jolamine xx

Hi Jolamine. Good to hear from you again. I have been working hard on my cupboard for the last 3 days. It took a whole day just to empty it sorting things out as I went. 4 bags to the tip and 2 to the charity shop so a lot less to go back in and space for some crafting stuff. The painting has been hard work and my hand has been very painful but I'm determined to finish the job. I had a tattoo done a few days ago to mark a year of cancer treatment. I already have my favourite American singer's signature song "Fear Nothing" in his own handwriting tattooed on my upper arm and this time went for a Bruce Springsteen song, "No Surrender" on my foot. I am also planning an anklet of forget me nots for 2 very dear friends that I lost a few years ago. I was going to get it then but covid struck and then cancer. Do you have any tattoos? Never thought I'd get one, but then I did!! You mentioned potting some seeds, are you a keen gardener? I do a little bit in the communal gardens where I live, just a little patch but I enjoy looking after it. My tummy is taking a long time to recover from the venlafaxine but I am glad to have stopped it as it clearly didn't agree with me and I was only taking a quarter of the dose my oncologist said I needed to be on. Still waiting to re-start my mirtazapine as the prescription was only done on Thursday and Easter has gotten in the way but hopefully I will get it delivered on Tuesday. I've rambled on enough so I will stop now, wishing you all the best, kind regards, Mog

Hi Mog,

It sounds as if you've had a busy 3 days, but I'm sure that you feel happier for having got the job done! I love your choices for your tattoos. - hope that you're already thinking of the one you want when you are cancer free! I don't have any tattoos, but I have planted forget me nots, after we lost my parents in law within just a couple of months of one another. They were an inspitarional couple, who lived to their late nineties and we miss them sorely.

I used to enjoy my garden, but am finding it a chore now. Both knees gave me a lot of trouble when I was taking Letrozole and I had both replaced. My back also gives me a lot of pain, so bending is out of the question. I have over half an acre, which is just too much for me now. I really think that we'll have to start looking for a house with just a postage stamp to sit in.

I hope that you get you Mirtazapine tomorrow and that you soon feel the benefit of it.

Kind regards,

Jolamine xx

Hi Jolamine, sorry I've not replied sooner but I've been under the weather and just not thought to check for messages til now. I still have such a badly upset stomach that I am wondering if it something other than the venlafaxine to blame. Its been quite a time now since I stopped it and my poor tummy is still very sore and upset. My joint pain has been awful too, my knees are very painful but not as bad as my left thumb joint and wrist. How I thought the switch to anastrozole was a good idea i'll never know! When I see my oncologist in June I am definately going to ask him to do the NHS predict with me because if I'm only improving my changes of the cancer staying away by a point or two I'm not sure it's worth all this pain. How on earth did you stick it out so long? Did you ever think of stopping the treatment? It sounds as if you suffered permanent damage from it which must be hard to live with. It feels so unfair. To have cancer is bad enough and to endure the chemo is harder but for me the worst part is this. The bit that no one tells you about and the part that lasts the longest. To outsiders my cancer treatment finished a while ago now and in their eyes I'm "better" so there's no sympathy there. I'm so tired of hurting. How do i do this?? So sorry to be on such a downer but I'm really struggling at the moment. I feel so unwell all the time. I want my life back.

It sounds as if you have a big garden to take care of and as you say it's not so easy to take care of when you have back and knee problems. I can empathise with your back pain as I actually broke a bone in my lumbar spine in a horse riding accident many years ago now and have had severe back pain to contend with long before all this cancer malarkey. I am lucky in that where I live we have communal gardens looked after by a very lovely gardener. That being said we can do little bits outside our own homes if we wish and I have a small raised bed with a few bedding plants in that I take care of.

I was sorry to hear of the loss of your parents in law, was it very long ago? I lost both my parents just 7 months apart so have had a similar experience. Unfortunately I wasn't close to either of them and in truth miss my 2 best friends more hence the forget me not tattoo which, incidentally is booked for next Friday.

Once again I am sorry for my late reply and for being such a miserable cow. You must regret starting this thread with me but its good for me that I have someone I can talk to about all this that understands what I am going on about. Thanks for being there, love, Mog, x

Hi Mog,

Don't worry about being on a 'downer'. We refer to the cancer journey as a rollercoaster - up one minute, down in the doldrums the next. We are here for both, especialy the bad days, because we know how miserable they can be from personal experience. I am so sorry to hear that you are still having problems with your tummy. It might be worth seeing your GP about this, as it could be due to something other than the Venlafaxine. It doesn't sound as if the Anastrozole is doing much better, when you are still having so much pain - I think that most of the hormone treatments have side-effects, but some are worse than others.

Make sure to ask your oncologist to do the NHS predict test when you see him. This should give you the information you need to choose - something that I feel we should all be able to do.

The scariest thing for me was when I started to lose my sight as a result of treatment and had to wait 15 months for an operation to restore it. I was so furtunate that it could be restored, but that was a very scary time. Like you, I have lived with back pain since I was in my twenties, when I had a car accident, but it got considerably worse during treatment, as did every joint in my body. My hands have arthritic nodules on the fingers now and are very stiff these days. I cannot stand for any length of time, so I rely on my car and my mobility scooter to get around. I often thought of stopping treatment, but I didn't have chemo or radiotherapy, so I felt that I had to give this a try. I still have some permanent damage, but the one good thing to come out of it all is that I am still here nerly 13 years on. You are so right, we all worry about chemo and radio, but nobody really tells us of the devastation that hormone therapy can cause. I expect that, if they did, we would all think twice about taking it!

Your garden sounds just like what I now need. It must be great to have the pleasure of a garden without the pain (quite literally)! Your horse riding accident sounds awful. My son broke his neck in a fall two years ago. He has a Mecanno like structure in it now. This year he had to have surgery on his back for a prolapsed disc, so I have some idea of what you went through.

We lost my parents-in-law 3 years ago. My 97 year old father-in-law cared for my mother-in-law, who was bed bound and had vascular dementia, for six yers. Just after she died, he complained of a sore back. We took him to the GP 5 times, to be told tat it was 'just arthritis' and given a rub. On the fifth occasion, the GP referred him to the day hospital. He was admitted straight away and we were told that he had bowel cancer, which had spread throughout his body. He was given weeks to live, but only lasted 5 days. I was closer to them than I was to my own parents, so it is a big miss. I am sorry to hear that you had a similar experience. Losing your friends can often feel worse, because it reminds us of our own mortality. I am glad to hear that you have made the appointment to have your tattoo.

I can assure you that I don't regret for one minute replying to your thread. This is exactly what I am here for and, I fully understand what you are going through. It might not seem like it at the moment, but there are brighter days ahead.

Love,

Jolamine xx