Australian Sisters
Comments
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Jenn perhaps your Tony will begin to take all this crap very seriousy and give you the full support that you need. By the sounds of it your RO has given him a great deal of food for thought. Chin up lovely, you can do this. You have some this far, not much further to go.
So glad that you can still do the herceptin although your LVEF had dropped.......as you say though, not a significant amount.
Enjoy the rest of your time off and take it a bit easy wen you return to work. Please don't be afraid to take more time off should you need it as this journey surely is fatigueing.
Love n hugs. Chrissy
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Kate - just went back and saw your weekend description. Sounded great!!!! Nice to see some of that money raised actually going directly to the people with BC :-)
Kylie - do you have a start date for rads yet?
Gerri - sorry you can't seem to get away from us - but we're all too nice to leave ;-) Hooe you are doing OK.
Chrissy - thanks for all your lovely words of encouragement. Don't know what I'd do without all of you "holding my hand" through this crap! There's certainly no-one reaching out locally to provide support (outside of family and friends I mean).
Jenn0 -
Hi Jenn, I had a mx and even with macro mets in one lymph node and no ALND I didn't need to have rads. Is this different for you even if you have a mx in the near future? Great news about your MUGA - you have lots of leeway their :-)
I have good news. I had my mammo and u/s today, and it's all clear! Everything looks exactly the same as last year. Yay for me! I feel on top of the world lol
Trish
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Yay on your follow up results!!!!
My BS only took 1 sentinal node and it was positive so because they don't "know" if there were any more (because I refused the ALND the next week) they are all insisting on rads. So, even if I had the BMX now they would still want to do rads. Yes, despite me having no clinically evident enlarged nodes and having had a CT scan that also couldn't spot any.
I've challenged the team enough I think at this point - no ALND with the positive node, asking for a different chemo, asking for less radiotherapy than standard. I know deep down I need the rads - the ongoing pain in my breast after each chemo treatment, even though an ultrasound couldn't see anything is making me nervous.
Jenn0 -
Thanks Jenn, now I understand. I had 6 nodes taken, so they were reasonably certain there was no more spread. It would be worrying to have unexplained pain, hopefully someone can get to the bottom of it for you. Is it near where you had the lumpectomy?
Trish
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No it's not near my lumpectomy site which was under my breast. This pain is in a specific spot at the top of my breast :-( BS had me do an ultrasound a few weeks ago to see if there was anything there - but nothing out of the ordinary was visible. No-one seems concerned except me now. It really does hurt/ache though. Enough for me to head for the Panadeine Forte sometimes...
Jenn0 -
Hi girls - I've not posted here for a while as I still hate the new format.
Jenn - you might be surprised with rads - my rad onc is convinced that "chemo" girls do much better than non chemo girls. Sorry to hear about your heart. I get flutters quite a lot but I put it down to the AI as my onc told me. Enjoy your time off - still can't believe anyone would try to work having chemo. I was lucky and had income protection so got the whole time off both times even though I didn't have chemo the second time.
All in place for our trip to Adelaide. I booked a car and reserved a space for it at the hotel - they have limited spaces, so I got in early.
Mother and Baby doing well - he did have another day or so of UV but seems to be ok now. She absolutely dotes on him - it's so nice to hear.
Hope you are all ok
Sue
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Trish so glad your scan and mammo came back as clear as a bell! It sure does lift the weight when we know that things are good.
Jenn when dealing with BC everything we feel that is not normal automatically sends our mind to BC and mets. After all the treatment you have had it's not likely that there is anything left to worry about and having the rads.....well just think of them as the mop cleaning up after the carnage.
Yay Sue! Can't wait until June 23rd! Good to hear that the little one is doing well and equally pleased to hear that his mum dotes on him!.........it's a good feeling, knowing that love between mum and bub grows really quick.
Who else is coming to Adelaide for the get together? Or is it just going to be Sue and I? I sure hope not but I do understand for those who are still going through treatment at that time.
Got a text from DD1 this afternoon showing me her new car...........boy is she excited!.......lol Almost like a 4 year old on Christmas morning.
Love n hugs all! Chrissy
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Chrissy I really wish I could come to Adelaide in June, but money is an issue at the moment. I will be there eventually though :-) just not sure when
Back at work today - been off a week. Wish it had been a week's holiday.
Trish
xoxo
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Trisha - whoo hooo!! that is truly great news. Onwards and upwards for another year dear.
Not much happening here. I'm done 20 out of 25 radiations. I too was told about all the possible side effects and given everything from the worst case to the best case scenario's on what to expect. Luckily my SE's have been minimal. A bit of fatigue (but it can't even begin to be compared to the chemo fatigue) and my skin has darkened and looks tanned and is just becoming itchy now. I was told it will probably peel next week. My RO said my skin handled radiation very well but I think doing 33 would have started to cause compounding burns and blisters, so I'm pleased that I'm only doing 25 and a tan and peel is all I am dealing with.
Anyway Jenn. Hand on heart. You've had chemo (climbed Mt Evererst) and radiation will be like taking the chair lift to the top of Mt Kosciusko - PINKY PROMISE
.On another subjet, the betrothed daughter and her beloved came around to talk about wedding ideas last night. I think we must have 'millions' stamped on our forehead or something. 150 guests!!!! 6 bridesmaids!!!! puleease.... reality check..... early days yet and I'm sure once they start getting real costs thrown at them, they'll come to the same view I already have. Dreams are all very nice but the reality is that we don't have the money to fund a lavish event. If they want all of this, then they will have to work might hard and start saving now.
Have a great day everyone. xxxxxx
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It is absolutely freezing here! I went to a support group dinner last night, lots of laughs and it was great to get out.
Trish, so glad you are sounding better, I think I have just got the plague now everyone else is getting over it.
Chrissy, i hope your levels stabilise soon, relax and enjoy the fire.
Kate, what a wonderful weekend that sounds like, so glad you found benefit and enjoyed it.
Jenn, glad to hear about your heart results, that is great news.
Lyndal, I think I will do what you have done, I can't imagine dealing with long hair ever again!
I have my radiotherapy planning session (tatts) on the 4th of June. I am dreading radio mostly because of the four hours travelling per day. The good news is another lady, same age as me, is doing rads at the same time, so we will travel together on the bus or do some car pooling. She lives about half an hour closer but I feel so relieved about this.
I tried to get the Canadian dose dense short course also Jenn, but my RO said yes he does do it, but I didn't qualify, I am doing the 5 weeks plus boost.
Off to school to do a simultaneous book reading with all the other primary schools. Picked Dom up yesterday and the kids were in the school vegie patch and they had made wedges from their potatoes for lunch. He is very happy in his new school which is great. Hugs to all xxxx
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Wish I could come in June but can't do that and have a holiday in September. We have a wedding next weekend. Tomrrow I am off down to Dunedin for my aunt's funeral and then have visitors this weekend. So things are a little expensive at present.
Trisha, do hope your daughter can see there is no need to have a great big lavish affair. Our DD was much to my surprise extremely reasonable. We had afternoon tea after the service then 70 at the reception.
Must get some things done while DGS is sleeping.
Jenn, have had several lumps and hardening all turning out to be nothing to worry about. Chrissy is right we do worry a lot more once we have had BC.
Big hugs.
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Don't quite know how to approach this.
A lovely lady I know gave me an envelope with a letter and a couple of DVDs. She is studying to be a nutritionist and is pushing something called 'glyconutrients'. There was also a DVD about cancer and suppressed immune systems and one on "how I conquered cancer" by a Pastor.
I know she meant well but everyones "help" always makes me feel like i must be doing something wrong or I would be ok. As for 'how I conquered cancer' presently I am putting all my beliefs into chemo and radio.
Any advice would be appreciated as to what I should say to her. Kylie x
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We have a couple we used to be very good friends with from our old church (we stopped going). They've effectively "dropped" us. Anyway, the older ladies at church have been dropping in a couple of meals a week.
A few weeks ago the husband of this couple turned up with the meals on Sunday afternoon. I thought "wow, maybe we are on the "in" again" and offered him a cup of tea. Well, turns out he's selling some antioxidant juice stuff now and had volunteered to deliver the meals so he could try and sell me some...
I just told him that I'm under medical instructions to not take any antioxidant stuff through chemo or rads "sorry".
Couldn't see the back of him soon enough!
Jenn0 -
http://en.wikipedia.org/wiki/Mannatech is interesting Kylie. The independent studies all poopooed that glyconutrients do anythng except increase flatulence and I highly doubt any of us need that particular assistance
. If I was you Id say thank you, but with my health and treatments I am unwilling to try glyconutrients as Mannatech has already settled a class action and a civil action suit for over $17 mill US for representing its products as being able to cure whatever and how they settled the suits because they couldnt prove any benefit from their product.Editted to add, dont you just love google haha
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Here is a news story from today on how herbal medicines can damage your liver... Good reason to be wary.
http://www.medpagetoday.com/MeetingCoverage/DDW/32856
Jenn0 -
Jenn, I agree we should be wary of all medications whether prescribed, over the counter or alternative.
I see that the bulk of liver damage was to body builders using anabolic steroids and many other so called supplements. Another group were weight loss supplements. Finally, of the 679 people studied with liver injury, there were just 29 (93x31%=29) people affected by other herbs and supplements including medicinal herbs. Less than half a percent of the total studied! That was in America where they seem to allow a lot more supplements which are not legal in Australia. Compare that figure to Paracetemol alone;
Paracetamol hepatotoxicity is, by far, the most common cause of acute liver failure in both the United States and the United Kingdom. Untreated overdose can lead to liver failure and death within days. - Wikipedia
Some articles are misleading as they don't put things into perspective. We're all prepared to take risks if we think we can cure or relieve painful or debilitating conditions. We need more studies into herbs but it all takes a lot of time.
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I forgot to say, when I was having chemo, I went to a nearby meditation group to see if I'd like it. The woman running the group gave me a DVD with some awful salesman making outrageous claims against chemo and flogging some "product" containing an alternative. The woman even said that the well known surgeon Chris O'Brien from the RPA TV series had taken the product but died because he stopped taking it. ??? Hey, I wasn't born yesterday. I'm open to alternatives if I've fully researched them and they're not dangerous, but would never take something like that with unknown ingredients and ridiculous claims.
It's really the feeling of being intruded on, and assumptions that we need outside help without asking for it that rankles. It puts us in the embarrassing position of having to rebuff them when they are obviously well meaning. I never returned to that place.
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Yeah its not nice having to wade through peoples agendas at any time, never mind when you are looking for a supportive community. Im not for or against supplements. What I would ask though is for proof of any benefit rather than people just falling for sales pitches cause the salesman, whether its of medications, self help books or anything else have their own agenda and their sales directly impact on their incomes.
I do think if someone believes that a supplement/meditation/spiritual guidance etc etc is helping them, then it certainly isnt hurting them, so long as their whole faith isnt in it to the exclusion of known cures/remedies/chemicals or surgeries that do have fact behind them. Which facts you actually believe in are up to commonsense and research though so in my case I place my faith in my BS who has been specialising in Breast Cancer for at least 20-30 years and my oncologist who has less experience but a lot of data to draw conclusions from. Right or wrong, guess time will tell, but I can live with my decisions and at this stage, the fewer pills the better.
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The lady who visited me as a cancer support visitor in '95 before my mx, told me about a cancer support group notice she saw in the local paper.
As there was no support group in our town at that time, she decided to go along.
When she got there, she was flabbergasted to find that it was a sales pitch for shark cartilage. The guy who was running it gave a spiel to the
folks who turned up and then tried to get them to buy some very expensive capsules. My friend tried to sidle out the front door but the bloke
saw her and pulled her up wanting to know why she wasn't buying any of his 'magic bullets!' She didn't want to be rude so she told him that
she only wanted to attend a support group for people like herself. He told her that he had had cancer and had radiation and chemo, but the shark cartilage
had cured him. My friend started to get a bit angry when he told her that if she didn't start taking some of his 'cure-all,' she might as well go to the hardware
store and buy the nails for her coffin, as that was where she was headed.
She turned on him and suggested that he didn't have any more of his 'support' group meetings as she was going to ring the authorities to ask them if what he
was doing was legal!
There were no further community notices in our paper about his group after that and the next group was the one I currently attend.
Sheila.
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lol good on her Sheila. Its despicable when people try to take advantage of others.
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I've been lucky, in that since I started treatment no-one has offered me any "cures". When I was dx though - that was a different story. Everyone had a reason and cure for my cancer. Everything from eating meat, diary and vegetables! Not sure exactly what I was supposed to be eating if none of those lol.
I take supplements, but all with my gp and onc's approval and mainly to help with the joint pain. Glucosamine, fish oil, vitamin d, magnesium and caltrate. Before bc I never took a supplement, as I made sure our diet was healthy and included everything we needed.
Kylie - when people offered me "advice" when I was dx I would just smile and say thank you. If they were to try to get me to take something now - I would just say anything I take has to be approved by my onc so as not to interfer with my current medications.
Kate - I laughed at your dds list for her wedding. I'm sure once the first flush of being engaged is over common sense will prevail and she'll realise that unless she has savings stashed away somewhere it will be a small and affordable wedding. You really should have the "millionaire" tatoos removed though - it does give the wrong impression lol
I hope everyone else is well. I'm still battling the cold part of this virus - but that's easy compared to the other part of it from last week. And I've been able to keep off most of the weight I lost while sick. I'd started a diet a couple of weeks before getting the virus and have now officially lost 4kg!
Trish
xoxo
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Well done Trish on losing weight,do you find it takes longer to get over ailments since BC?
Kate, hope you are not too burnt and tired from radio. My DD certainly had to rein in her original wedding ideas due to budget. Sue good to hear from you, I hope you get used to the new format.
Joy, Lyndal and Sheila it's great to hear your views, they are so on the ball. My onco said yesterday they have a clinic at the public hosp where I will get my radio, with massage, aromatherapy etc. He said he believes it is good to do things to relax us and make us feel good, not take things which have no proven benefit and could have negative effects. It was interesting that he also mentioned that the financial ramifications of a lot of "alternative supplements" have been a huge problem with patients. It is such an expensive process, no need to add to that.
Jenn, I hope you are relaxing on your time off and have found ways of occupying yourself.
I start my radiotherapy on the 25th of June. It is great to see the end in sight but it is also a bit scary. I am having an Ultrasound on Tuesday. Onc thinks lump at base of breast is fluid but said it is better to have US and relieve any worry. Last chemo next Thursday, yay.
Thanks everyone for your comments, this group is so good for putting everything in perspective, and I feel much better about saying 'thank-you but no' about well meaning advice.
Kylie x
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I've just been to see my onc for my first visit since December. Warning here - I'm about to rant!!
He has the results from my bone scan about the arthritis, but maintains that Arimidex does not cause problems with big joints - only small ones like fingers and toes. Grrr .... I could have throttled him. He thinks the arthritis is just old age. Excuse me? I'm 55 and while that's not exactly a spring chicken, it's not old lady stage just yet. And the fact that all this has occured in the past 14 months while I've been on Arimidex.
So - I'm going off the Arimidex for 8 weeks and he wants me to monitor my pain. Then I'll go onto Aromasin for two months and see him in Sept. He has the requtation of being one of the best oncs in Canberra - but he's not easy to talk to.
I must admit I'm quite happy about having an 8 week holiday from Arimidex though :-)
Trish
xoxo
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Half your luck Trisha. Im green with envy for the arimidex holiday. I think he would have a different opinion if he had to take our pills though. The pills age our bodies and of course arthritis is going to occur. Im 45 and my poor body creaks and groans all the time which it DID NOT do pre BC
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Lyndal, I agree if they had to take the pills it would be a different story. I've even suggested he read some of the threads on here, but he wasn't impressed.
Hope everyone is having a great weekend.
Jenn, hope this treatment is gentle on you. Kylie, how are you going? Kate, hope you are going fine too!
Chrissy, hugs to you :-)
Trish
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I was good yesterday (steroids). Seem ok this morning. I have a CT scan tomorrow to see if I have pneumonitis... :-(
Susie - I really should check what forum a topic is in on the active treads page before I click in. I just read that "scared" one (Alternative section) that you commented in. Wish I hadn't since the poster has good reason to be scared since she's Her2+ and turned down everything except the surgery. Congrats on being able to say something sensible without actually telling her she has good reason to be scared... I'm not clicking into that one again - just makes me angry.
Jenn0 -
Jenn - I agree, I don't know where she got her percentage from, in fact I'm sure we corrected her on the HER2 forum at some stage. A 2cm is far more serious than my 1cm one. I was tempted to say more, but really wanted to set the record straight in case someone else read it. She should be scared.
I'm still in my pj's - been watching Insiders, Bolt Report and Meet the Press. Steve at golf - what's new.
The pool pump fused yesterday, so I called and made a claim today. Hopefully I'll get a new one quickly. New ones are $1200!!! lucky my excess is only 250.
Might go out and find another new bra - I got 3 last weekend, but they had no more in my size. I want at least one more.
Bit chilly up here 6 this morning - love it.
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Hi ladies. Jenn I hope your lung problem is easily treated. Will be interested to see if it is Pnumonitis (sorry for bad spelling).
Susie (or anyone) any experience with the bras they are always advertising on telly? I am still wearing my front hook up post-surgical bras. They're comfortable and supportive. These other ones seem the same but without any hooks.
I'm getting a pulling feeling under my arm from radiation. But only two more to go (whoo hoo). The RO said it is from the scar tissue from SNB becoming inflammed from the radiation. Skin is mildly red and irritated but it just looks like I've been out in the sun for a bit too long.
Hope everyone else is well. xxx
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How many days did you have Kate? I am having 28 days and the info pack that came yesterday in the mail says they shut down the machine for a day each month so I may get either 1 or 2 days break along the way. Hoping I don't have too many probs... I start on 18th of June and will finish on either the 26th or 27th of July depending what day of the month their shut down is...
Jenn0
