Australian Sisters
Comments
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Hi, Thought I would add my bit here too.
When I was dx I was pre-menopausal (44years) and my onc told me that tamoxifen was the hormonal used for these women. Did work post-menopausal but not as well. I had a mirena in and that was ok to keep, even though I was extremely highly responsive to ER/PR.. Kept having my period on the tamoxifen for 2 years until I needed to change to Megace which was also suitable for pre-menopausal women. That stopped my period and I haven't had once since. I went on to Xeloda and after making my onc do three blood tests to confirm I am now post menopausal I am now on Femara. That is one of the first choice for postmenopausal. I still have the mirena even though my onc keeps telling me there is no way I can get pregnant, due to my long story history, I keep it in. I'm nearly 50 now so I think I am safe. Think it can go soon.
My onc did tell me at the beginning that Tamoxifen can increase fertility . Can you imagine that, the trauma of being dx and then getting pregnant from the treatment. I think that would have sent me over the edge.
About the sex desire thing. I'm pretty sure it depends on each women. For me it has become harder work to get in the mood but that probably has as much to do with general stress and trying to multi task that all of us do. Yet for some it stops things bang and it's all over. I haven't had a lot of chemo except for xeloda and that was just the same as on the hormonals. Haven't noticed things drying out so all good in that dept for me.
Love the way we can talk here. I know for sure my onc wouldn't give me half the information, not because he doesn't care, but more because he isn't living it like we are.
Thanks for the aussie/kiwi thread, things do work slightly differently from the US treatments sometimes.
Moira
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Well I got my five tatts for radiotherapy today, feeling really sexy covered in texta also. Sex for me is an issue because I just don't feel like 'me'. 44 years of getting used to being who you are and suddenly that is all altered. I have told hubby he needs to perservere because i personally have lost the confidence to start. From what i have read the dryness etc gets worse when hormones start. I use sylk, I think any natural lubes are good, but not KY or anything with petroleum. Lots of ladies on this site discuss using cocoa butter and some make up small suppositories which they freeze and then insert for daily comfort. The other mention is for lignocaine cream for a bit of numbness, but can also make DH last longer, I don't know if you need doctors script for this.
Trish, so glad your photos went well. I enjoyed talking with you so much when we met up and I am sure you made a huge difference in a difficult time.
Kate, I just love your sense of humour.
Jenn, my eyesight, which has always been perfect is starting to stuff up, chemo really sucks.
Midnight, my periods are still haywire, I am having bloodtests during radio to confirm where I sit to decide on hormones. I will also use my genetic testing to decide if I will have an oopherectomy.
Off to bed, it took all day to get radio stuff done, not looking forward to four hours travel a day, but it will be over and another step in the march forward. I try to be positive but I have requested No More Motivational mugs, wall hangings or sashes. xx Kylie
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Hi Moira, lovely to meet you here. Thats fascinating and yet slightly terrifying about the Tamox. Cant think of anything worse personally than getting pregnant at our ages from treatment.
I hope the next few weeks goes fast for you Kylie so you can put it all behind you (and save the petrol money).
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Kylie, sounds like you weren't too traumatised by the experience. When do you start, was it next week or the week after? I go tomorrow for my planning CT and tatoos.
Tomorrow should be interesting since I am pretty sure this pneumonitis is not clearing any further and it, and any permanent damage it may have caused, should be visible on the CT. My MO was going to message my RO to let her know about the pneumonitis as it may impact my treatment start, or even if I can have it at all (if there's permanent damage from the pneumonitis)...
Jenn0 -
Hi Moira - Welcome
.Kylie - did you get some nice tatts? if yours are like mine, you need a magnifying glass to see them. Honestly even my smallest freckles are bigger than my tiny dots. Definitely wouldn't get very far in a tattoo lineup.
Jenn, I hope they don't do the rads on you until you have the all clear with clear lungs. Only because I'm now realising that radiation has a cumulative effect, which I am just experiencing now.
Just for my two-cents worth of experience, I had 5 weeks and really didn't notice any SE's of any kind until half way through the second last week. Then my skin over my left breast just started to turn pink and itch a bit. It was also around that time that I began to feel a pulling sensation in my armpit (but only at night when I was sleeping, never during the day). That lasted about 5 days then went away. In my last week however the skin under my arm darkened a fair bit (deep reddish purplish and a lot more than the breast) and then started to peel. Again at night was the only time I felt discomfort and usually from having my arm tucked in tight to my body and then moving it outwards - the skin separated and then I could feel it. But again it was pretty mild, I was just aware that I had to move the arm outwards slowly. Once out there was no more stinging feeling. It has nearly gone now (day 6 post) although it doesn't look very pretty.
Fatigue was only very mild and fleeting, but...... this week I have had it constantly and quite badly for about 3 days now (still not as bad as chemo, but enough to make me fed up with it). I am hoping that it doesn't last for too long as I just don't feel like doing anything. It could also be psychological after past 6 months of just focussing on active therapy and now nothing. Kind of like a physical reaction now that it is all over. Or, it could be a little bit of both.
So I'll be interested to know how you and Kylie do with yours when it's all underway.
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Hello Moira - welcome, it is nice to have our own threads isn't it!
I'm thinking of all you girls going through or starting rads. I was pretty lucky and didn't have to add that to my regime, although now I'm starting to feel left out for not getting the sexy tats and texta Kylie! lol
Not much happening here - terrible weather today - wind and rain, but they tell us it will pass later this afternoon.
I think I mentioned to you all that I've been on a diet? Well as of this morning I've lost 6kg! I'm pretty pleased with that.
Have a good day everyone.
Trish
xoxo
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Way to go Trisha. What are you doing to loose weight? any tips you can pass onto me please? xx
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Kate, I've just been really careful with what I'm eating. I got an app for my iPad, and I record everything I eat and also how much I exercise. I must admit I haven't been exercising as yet - I have so much to lose that just cutting down on the fat and sugar in my diet has been enough so far. But I will get to the stage where I'll have to start moving more to keep the weight loss up.
I decided I really had to do something as the arthritis will be easier to handle with less weight, and we know that less fat on the body helps prevent recurrance. So I bit the bullet and started lol
So - no big secrets - just less in lol
Trish
xoxo
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Linda, i mentioned it to the Doctor( GP) and they said it would be menopause and that happens during that, so i did not go further into it, but no not to the oncologist, i have not, just left it at that. i rang Breast Cancer care nurse and she never got back to me. i hate ringing as i feel like i am being a pain as they are so busy and that was to ask about recent mamo reaults and then the radiologust rang herself and told me about the repeat ones i need to do. i still have not heard from Breast C Nurse. But yes i did get shock it had come back as i was thinking yay that is all over.. i suppose i should tell her. the doctor told me to write it down.
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midnight - I have found that the Breast Care Nurses at my centre always seem too busy as well. Stupid me initially thought they were supposed to be busy with us breast cancer patients, but I was obviously wrong...???
Jenn0 -
Well they tell you not to hesitate to call if i need anything, but you always feel like oh should i ring. last time i did talk to her she had an international call coming thru, so i was cut short, but had got the answer i needed. i think they should have another assistant to help her as she does cover a huge margin of area . so i try to be a little more empethetic to her and understand, there are other ladies who need her. but i need to ask her things at times, mind you, you girls are a wealth of info and i am so appreciative of that.
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Trish and Kate, I'm still maintaining my 10kg weight loss but need to get cracking on losing another 10. It's just so hard when it's cold and you want to eat more of the stoggy stuff......lol DH was on the diet (eating plan) with me and has now lost 25kg and looks like a new man! Well more like the man I married except for the wrinkles....hahahaha!
Good luck on your weight loss and well done on loosing full stop!
Love n hugs. Chrissy
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Chrissy how did it go with your INR last week. has the clot desolved on gone away.?
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Midnight, yes it was.....yay! No more coumadin for me, thank goodness. I thought I let everyone know? Maybe not....lol.....the memory is not what it used to be........is that a sign of getting old or just a SE of the meds....who knows?, who cares?.......I'm just living life and loving it and especially since I got rid of the clot and all the drama that went with it.......super YAY!!!!!!
Thanks for asking.
Love n hugs. Chrissy
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Chrissy. i just got back the results of the blood test i did for colestreol, that part is worse, and some thing else is worse can't remember, sugar levels are a liitle elevated but ok, but they are coming to the conclusion it is is the tamox that is causing the colestreol to remain high, i eat alot of antioxidents and stuff that i should not have high colestreol. also my kidneys are good. she also said they see lots of clacifications in that right breast that was clear before. the other breast was ok that was the problem last year.
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Midnight, unfortunately having high cholesterol seems to go hand in hand with Tamoxifen and the AI's (Arimidex, Femara and Aromasin). Mine were fine for a long time but then started to rise and got quite high before my doc started me on a low dose statin to try and control it. It seems to be even worse if you have a propensity for high cholesterol in the first place. Good that the sugar levels are good even though slightly raised. Was it the Triglycerides that were also high? Do you eat a lot of cheese? Why I ask is cheese is notorious for pushing the triglycerides up.
I guess it will be just a wait and watch on those calcifications...........I'm really sorry that they are turning up.
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I have bouts of eating cheese, sometimes have cheese toasties with soup, yum, but then i can go months without eating it. i just can't remember what it was and i feel a dickhead asking again.. i may ask when i go in again, and she is probably going to ring and get me visiting the Doc soon to discuss colestreol results, so i will find out then. probably Donna who is a speclist nurse who does that part of it will be the one i see. i thought it would be better as i have been trying to be a good girl and eat good healthy food.
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Midnight, been there tried that and it didn't work. Nothing will if it is tied to the medication so it comes down to the fact that you may need to take another pill to stop the bad effects of the one you are on. I always ask for a copy of the path reports when I see my doc, that way I don't need to ask again I always have it on file. It takes two secs for them to copy it and I have never had even a specialist refuse my request.
I try to eat heathy 99% of the time and then every now and then I eat all the things that are unhealthy.......lol!
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Chrissy - sounds like we'll have a nice lunch when I come down
I eat anything I fancy.0 -
Yay Sue! Where and when do you want to meet? I will stay with my daughter who lives 7 minutes out of town so there is no problem for me to pick you up. I am so looking forward to getting tgether! I also eat just what I want or fancy....lol.......I can always diet when I get home.
Love n hugs. Chrissy
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Hi everyone...
No high cholesterol here YET, but it's interesting reading about the potential which I had not realised...
I had my rads planning session and tatoos this afternoon. It was OK. The staff were very nice. I was supposed to start rads on the 18th but because the machines are booked out am now not starting until Tuesday 26th June!!!! Since I finished chemo a week early that will be 4.5 weeks after chemo finished. I'm really not happy about this since that takes me outside the usual window for starting. Has anyone else had this big a gap?
The RO didn't seem too phased by me already having pneumonitis but had already organised for me to have a lung function test the week before I start rads and then every week during. It was all so busy with marking etc that I couldn't ask any questions about that but I now have several and will email her in a few days. The main ones are "why on earth I am doing these if she is concerned enough about my lung function to test it?" and "what is the likelihood of me being left with more serious lung damage at the age of 47yrs???".
So, I am now having an x-ray in a couple of weeks ordered by the MO to check my lungs for damage from the pneumonitis, and will also have a lung function test for the RO that same week. If either or both show ongoing problems caused by the pneumonitis I will have to give serious consideration to giving the rads (with guaranteed lung damage) a miss and moving straight on to the hormonals and the double mastectomy. That way I can "save" the rads for use only if I have a local recurrance later...
The tatoos weren't too bad and after asking the lovely young lady about to mark me "how many people have you already used that pen on?" I asked them to use a new marker pen on me that she then gave me to bring back each day during rads. I was surprised to be told that despite the tatoos they still mark you everyday. What was the point of the tatoos then huh?
Jenn0 -
I certainly hope that everything goes ok for you Jen, yea the rads can be hard on your lungs. as far as the tatoos go, my hubby got the magnifying glass so he could see them lol. You hang in there girl.
Chrissy, lol after getting that bad result of colestreol and saying i was a good girl, i was not last night, i had sausages and chips for tea and enjoyed every bite. the snarlers were soooo good and chips were nice and dry and hot. so it pretty well comes down to it, i really enjoyed my sinful tea, hubby loves butter chicken, so he had that. it is an indian takeaway and their sausages are devine, their fish sucks, has that freezer taste. but man last night, i so enjoyed i what i had.
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lol i brought a couple of sausages for the dogs, one each. but they ended up with only half of a one as greedy mum polished one of theirs of as well. i then stopped as i thought i may pay the price later as i am on losec for reflux disease and felt bad for the dogs that i ate part of their tea, they had biscuits in the end as well.
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Midnight it's good to be bad occasionally ...... lol. I ended up cooking pasta with creamy tomato and vegetable sauce.......yum! Even got the lick of approval from my little dog......hahaha
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that sounds incrediably yummy too. Mmm yum, it is the old soup routine tonight, it is very darn cold wet and miserable, so good soup weather anyway. nice and light after my night of sinfulness. lol
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Tonight is sinfull night for me as it is pizza night! Our one and only take away but they are prepared fresh by a true Roman and very traditional. I think I will do some stuffed and baked apples and custard for afters. ........ now that is really yum!
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Arrrgh! Day 8 today post last radiation. You'd think I would be feeling on top of the world wouldn't you? but I have to admit that I feel like I have been flattened by a truck. I just have no energy or motivation and I feel emotionally very flat. This isn't like me at all, and all the way through treatments etc I have stayed pretty up-beat and positive, much to the admiration of all my family. I put a call through to the cancer centre hotline for the first time, just to find out if this is 'normal' or not. Apparently it is very common, almost like a big let down after so many months of having such structure and focus, so I will just have to try to go with the flow and not continue to try to swim against the tide - so to speak. I am just exhausted emotionally and the Kate as I know her, is nowhere to be found these days.
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Awe Kate. Feeling that way really is the pits! The one good thing is that there is no way to go but up! Hang in there.
Love n hugs. Chrissy0 -
gosh chrissy, that sounds devine. enjoy. you make me hungry. lol
Hey Kate, i do hope you feel better very soon. it can certainly make you feel deflated. be thinking of you. cheers and hugs. Midnight.
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I'm sorry you are having to go through this Kate and hope that your old self peaks out soon :-)
Jenn0
