Why not join the Living with metastatic private group? Access group via the link here.
Breast Cancer Trials Q&A with Annabel Crabb - Metastatic Breast Cancer. Feb 7, 2022
arpie
Member Posts: 8,124 ✭
This link came thru my emails today and may be of interest to you.
(click on link above to register.)
In this upcoming Q&A event, moderated by TV presenter Annabel Crabb, we will be discussing the latest in research for metastatic breast cancer with leading researchers, as well as the psychological impacts of this disease and participating in clinical trials.
Register for this online event today and submit your question on this important topic.
https://www.breastcancertrials.org.au/qa-registration?utm_medium=email&utm_source=newsletter&utm_campaign=q&a event&utm_source=Online+Q&A+Events&utm_campaign=47ff52d9a0-EMAIL_CAMPAIGN_2020_12_08_12_52_COPY_06&utm_medium=email&utm_term=0_12c58d6b37-47ff52d9a0-154610245(click on link above to register.)
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Just bumping this one to the top - @wendy55 - if ok with you, could you could bump it in the Mets Group, please?
https://www.breastcancertrials.org.au/qa-registration
Don't forget to register for this Q&A with Annabel Crabb ... next week, Feb 7
I will register too, as hubby is on some of the same treatment & experiences the same side effects0 -
Hi @arpie, thanks for the heads up, however this starts at 4.30 sa time and the 7th is my day for chemo in adelaide so dont think I will be home in time for it, will it be available to watch at a later date, also did your hubby have trouble with crawling sensations on his body with his chemo I am experiencing the same thing and its driving me nuts,I get jumpy legs at night as well, not making me a vary happy chappy at the moment!
ps,how is this going to be broadcast is it zoom if it is I cannot do that,we tried once before and were not very successful any hints anyone.
wendy551 -
Hi again @arpie,
you suggested about putting in living with mets group, sorry I dont know how to do that I really an technologically challenged perhaps someone from bcna can help? this has not been put up on the living with metastatic group, I just checked.
thanks,
wendy551 -
Hi @wendy55 - I don't think he has the crawling sensations - but definitely has the jumpy legs! Regularly kicks me - like every 10 seconds, sometimes!! Hence we are now often in our own beds!
He is just totally exhausted & gone off his food again .....
Re putting it in the Mets Group, just copy this link & paste it - it will take them to the page & introduce them to the speakers & the registration & the putting up of their question - I will ask @Mez_BCNA if she can also make sure it is in the Mets Private Group, as I know that some don't really look at the main forum much and it would be a shame for them to miss it. xx. My girlfriend in Qld and Old Bar have both registered & put their questions up, as have I, today, as hubby is on similar treatment & same side effects.
https://www.breastcancertrials.org.au/qa-registration
I don't think it is a Zoom session - I'd say it's just going to be a 'youtube' type one, otherwise on Zoom they'd allow 'live questions'.
I am sure there'll be a link afterwards for the recorded copy & I'll make sure you get it xx
take care xx
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@wendy55 I noticed your comment about jumpy legs at night, and I had the same experience. I mentioned it to the oncology nurses and I had a blood test which included taking my levels for magnesium. It turned out I was low in magnesium, probably caused by chemo depleting my body to a low level of magnesium. I went on magnesium tablets at the dose my oncologist recommended. It worked, and no more jumpy legs. Might be worth investigating if this is also the reason for your jumpy legs. Take care.1
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Forgot about that - probably still got some! Hubby used to take magnesium tabs back when a top athlete - restless legs is very common amongst athletes too.0
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Hi @Keeping_positive1,
thank you for that, I am having a complete blood evaluation done on Friday and will see what the results show, I do take a magnesium supplement, however I do believe that this is also down to side effects of chemo, last night was really bad,this morning not so,also I havent had my vitamin b12 injections now for 12 weeks I start again next week, this also helps,last night I took a Lyrica tab only 25mgs and that also helped,cancer the gift that keeps on giving,!!!
wendy551 -
Definitely take magnesium for jumpy fidgety legs and cramps. It helps along with good footwear. 😃2
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OK .... I watched the Q&A on Mets BC on Monday and it was very interesting. The 4 presenters on the right (in the pic at the top) were a part of the discussion. Not sure who the lady on the left was, in the pic.
Over 1000 watched the Webinar - so obviously not all questions could be addressed. Neither Wendy's nor my question was addressed ..... but Annabel said at the beginning, that questions would be 'answered by email' .... but no-one that I've spoken to has had this happen yet.
I am keen to watch it again, tho!
https://www.youtube.com/watch?v=Td-ejQkoF7s
They have also sent out a survey to take re the program & any ongoing Webinars - to see what you would like to see 'covered'.
I've messaged them as to whether the questions on the registration form were going to be addressed separately. I hope to hear back soon.
I thought that a fair bit of the discussion was more on 'how do you know if you've got Mets' rather than addressing those who already have Mets & are looking for treatment answers. Specially for those at the 'pointy end' who may be on their 'last option chemo' (after trying several treatments), with poor quality of life, who are looking for research/treatment answers NOW. Their wish may be for better quality of life, over & above 'quantity' & wonder if they could go back to a previous treatment which, altho not 100% effective on the cancer, was at least holding it at bay, whilst allowing for better quality of life - ie able to get out & do 'normal things' rather than being forced to stay at home with nausea, neuropathy or gastro ruling their lives.
I am interested to hear YOUR take on it, if you watched it. if you missed it - check it out in the link above?
What did YOU get out of it?
I may have missed bits too, as I had to leave the screen a few times to attend to hubby .... so will definitely watch it again, when I can.
take care xx
@Mez_BCNA - could you copy this over to the Mets Group, please?
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