Anyone starting Chemo in December 2018?

[marryblackburn]

Hi Dikat,

Here is my favourite Shampoo for Color Treated Hair that you can try. I am using it for a long time.

[Wahini]

Hi, asked my oncology team too and they told me the same. We should take care of ourselves but no need to self-isolate like suggested in the letter. 

[Kip]

Hi ladies,. Just wanted to add ive had the shielding letter too and i finished active treatment in dec 2018,. Had chemo and rads and on Tamoxifen.  Ive checked with my oncology team and advised i am not classed as extremely vulnerable and can have my hour exercise as per everyone else.  They have been inundated by people getting these letters who do not fit the categories ,. She thinks they have been filtered by using the words, cancer chemo etc.    It was very worrying to receive it though

[maryKamille]

Hi Wahini

Got a private message from you just now 6/4/2020) asking if I was still using the forum here for Dec 2018 starters. I just put that one message on because it was relevant to what's happening now regarding Coronavirus. I hope this gets to you. I can't see how to reply to your private message other than here. Yes, anyway, to both your questions! Hope you are keeping well and get this.  Maybe we can pick up this correspondence once more?

[maryKamille]

Hi absolutelyannie and anyone else out there.  I am following you on Facebook but haven't contributed.

I also had a 12-week letter and queried it with my GP surgery. I was told to just do it, as I had the letter!

However, I am due a review at the hospital soon and phoned today to query it - thinking obviously this appointment is not going to happen! I asked about the letter, too.

The appointment will be a telephone consultation but - more interestingly! - the letter does not apply. It's because of my age and having had breast cancer that I got caught up in the algorithms which generated those letters. I checked it out and was told specifically that my Zoledronic acid injections and my Exemestane daily oestrogen suppressant tablets have NO EFFECT on my immune system. I should merely follow the government guidance regarding social distancing etc and handwashing and being very careful. After a fortnight of hell, I am now free to go for a walk and shop for food!

I suggest everyone checks with their Oncology department who is in doubt about that letter! Whatever you decide to do about 12 weeks of isolation, at least you will not feel so much at risk.

[absolutelyannie]

Hi all 

I too have had the letter to isolate for 12 weeks.  to be honest I cant get through to my GP to query it but have been sticking to it. 

Absolutely hate it but having a good spring clean!!!

I really do not want to have to go anywhere near a hospital right now.  I finished treatment in August last year and feel well but as there is nowhere much to go I feel it is in my own interest to stay inside. Have heard some horrible stories so don't want to become a statistic

[Wahini]

Hi ruthie2 and minimad, I think I should query it too. My chemo finished in March, radio in July and I feel alright. Twelve weeks of self isolation seems over the top. I wonder what are the criteria. I think for me maybe the Herceptin as it is anybody treatment but my bloodcount was always fine througout.

[ruthie2]

Hi minimad, I’d query the 12 week shielding with your gp, As long as you’ve no other health conditions anyway I finished chemo October last year rad just before Xmas and am also on 6 monthly iv zolendronic acid, as is a neighbour. Neither of us have received any thing about self isolating. I emailed my chemo nurse who checked with the oncologist, he said I was at no more risk than anyone else, given my gp refused to give me a flu jab as I didn’t qualify I’m inclined to believe him. (I’m 56 and my neighbour is 61) 

might just be worth a phone call 

[mini mad]

Hi Wahini,

i also had the letter - self isolate for 12 weeks 🤪🤪

i am post chemo 7 months now and didnt expect to receive this.

can only think that because i am having 2 years of 6 monthly Zoledronic Iv's  ( only have 2 more left but expcting it to be postponed )  that i am classed as still having ' active treatment '..  what can i say....stay home,  stay safe,  stay well.  Mini mad xx💖💖

could not believe the amount of idiots in London and throughout the UK who chose to ignore the governments rules over this weekend,  .... stay at home unless absolutely ncessary 🤷‍♀️  What part of this do people not understand.....  if this doesnt change and we all pull together then government will do ' complete lockdown '...  nobody can leave their home except for essential food shopping etc....  

[Wahini]

I am doing well Drummerswidow, I have started surfing again and getting my strength back. Bummer of your lymphedema, so far I have no such symptoms although 33 lymph nodes were removed. Maybe surfing in a wetsuit helps. Take care. These are scary times, and I hate the uncertainty, again.

[Drummerswidow]

Hi Wahini

I’m doing okay thanks. I got one of those letters too. Not sure why as I finished chemo and rads last year. However I have lymphoedema and have seen the Oncology team recently. I’m quite happy to stay away from everyone. Scary times! 

How are are you doing? Glad you have finished herceptin now. Stay safe and well xx

[Wahini]

Hi, how are you all doing? I am doing great, almost back to normal. But I got a letter from NHS that I should self isolate for 12 weeks as I am identified as a vulnerable person. I think this is because I had my last Herceptin injection less than six weeks ago. Did you get the letter?

[Nanna J]

Hi Jayne 1966

Just wondered how you are getting on??  Did you have a Mohekan ?   

Sending big Huggs 

[Nanna J]

Hi Nellie McNelly

Just wondered how you are getting on ?   I finished radiotherapy 23th June did you have radiotherapy? My hair is growing back nicely, slowly but I think I may have chemo curls 🤞🙌🙌🙌 I am 5 days in to using hair gel 🙈. I still wear my hats hair bands because I have a few bad hair days plus they keep me warm, I have that many that I think I am going to keep on wearing them but only if I keep my hair short/medium length, my family want me to keep it short but who knows - I have become hair obsessed, always commenting on others hair (my version of people watching 🙈😂😂).   Sending you big Huggs 

[maryKamille]

Thanks, Sunnydaze. There's so much on there now and I am trying to catch up! XX

[Sunnydaze]

Hi Mary Kamille 

you have definitely posted. I’ve just seen your post.

xx

[maryKamille]

Hi DiKat and everyone

I've just tried (9/8/19) to post a message to the group on Facebook and not sure if I achieved it! So, I am hoping that someone can confirm it got posted OK. It's been a catching up time for me and have read the other posts on there. I've replied about 'anniversaries' & soft drinks for nights out. The message seemed to post with a background colour of lilac. My other messages on FB always go through with blue, so it made me think something was wrong!

Thank you.

MaryKamille

[Daffydilly]

Thank you drummerswiddow.

[Drummerswidow]

Click on envelope at right hand corner st the top. Click on write message icon Put in persons user name and away you go xx

[Drummerswidow]

I don’t know. They’ve changed the forum since I last pm’d. I have a look and let you know x

[Daffydilly]

Still struggling with technology!! How do you pm?

[Drummerswidow]

Hi Absolutely Annie.

how are you doing with the rads? 

Yes I’m going to the meet up. If you’re going perhaps we could travel together. I can meet you at Euston. 😍😍

[absolutelyannie]

always good advice from Drummerswidow.  are you coming to the meet up.  I think there is going to be another next year.  

[maryKamille]

Hi Jencat

I expect others have got there before me but Zoledronic Acid and Zometa are the same thing, as you guessed. It is to strengthen bones - Chemo is so hard on bones. It's the outer structure of the bone that it repairs, nothing to do with the marrow inside. Apparently calcium can leach into the blood and fur up arteries so I think Zometa is about stopping that. I had a kind doctor at a review who tried to explain it to me as I was very anti the idea of ZA at the time.

I also have to take Vitamin D3 but I was doing that anyway before BC diagnosis.

Hope that helps.

MaryKamille

[maryKamille]

Hi Daffydilly

I'm sure others will have posted already regarding Zometa, I'm just a bit behind with my reading!

I have to have it every 6 months for 3 years, too. Had my first one end of July. Felt  OK until the evening and a bit rough for a couple of days - flu like symptoms - I had been warned that these can last for 72 hours. Anyway, took Paracetamol and got through it fine. No further problems.

I think new research always exaggerates and is often withdrawn later, so try not to think about that. Also, year by year is just that and you could lose weight any time. Plus they hardly ever even give you a percentage with these things regarding survival rates and it could be so tiny that you could discount it completely.

Try to avoid all this stuff - it doesn't help and only increases stress. You don't need that!

Hugs,

MaryKamille

[Jayne1966]

Pm me your mobile number 

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@Daffydilly wrote:

Thanks DiKat for the WhatsApp info - will try and link up this weekend.

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[Jayne1966]

Pm me your mobile number x

[DiKat]

Daffydilly and Absolutelyannie if you Email Jayne1966 your telephone numbers she will be able to add you x

[Drummerswidow]

You need to be added to our chat group. I think it’s Jayne1966 who can do it. I don’t think I can but i’ll Have a look. PM Jayne as I think she will need your mobile number to do it. Enjoy the Birthday celebrations xxxx

[absolutelyannie]

Jayne1966 sunnydaze dikat drummers widow

I have downloaded WhatsApp so what do I need to do 

[Daffydilly]

Thanks DiKat for the WhatsApp info - will try and link up this weekend.

[Daffydilly]

Hi all, zoledronic acid is the same as zometa. Very reassuring to know some of you haven’t had any side effects. Sorry for the downbeat post. I think it was just that I thought  I only had to take anastrozole and nothing else - wasn’t prepared for the thought of more unknown side effects. Haven’t posted much but have kept up with most of your posts - it helps to know we all have our ups and downs. I can’t change past weight issues, but have been going to slimming world since long before bc, and recommend it to anyone else who could do with shedding a few pounds. I managed to go throughout .Didnt lose much during treatment but didn’t gain either -over 5stone lost so far.

Wishing you all a good weekend. We’re celebrating husbands 70th with a trip to Battle Proms so should prove a distraction for a while😏

[Jencat]

I felt a bit achy after my last Zoldronic Acid, but I think I was feeling tired before I had it as I'd only lost my dad the week before. When I had it alongside chemo, the side effects of chemo didn't seem any worse than usual.

Interesting you've mentioned about the Vit D Drummerswidow, I'll check up on that. Like you, I've found counselling helpful.

When I asked about what I could do myself to help prevent a recurrence, alcohol and exercise was mentioned, but nothing was said about weight or diet x

[Drummerswidow]

Hi Daffydilly. 

I think we’re all feeling pretty low. Apparently this is normal according to my Oncologist as she discharged me! 🤦‍♀️. I’m having Zometa and am also overweight.  I started Zometa when I was having chemo. My regime was 6 weekly for 3 doses then 6 monthly for 3 years. 

You can get flu like symptoms but I never noticed cos it was with my chemo. The one I have had since I don’t think I had any problems. They will probably want you to have a check up on your teeth. In rare cases it can cause a problem. My dentist was happy for me to have the infusions as I go to the dentist regularly and look after my teeth. I weighed up the pros and cons, and decided to go for it. I’m on Letrazole which can affected your bones, osteoporosis, so am happy to have some protection for my bones! I also have been told to take Vitamin D everyday for the next 3 years and then October to March every year. 

It’s a constant reminder and the treatment seems to go on and on but I’m managing with it ...... today! Lol.

as for the weight, well I have lost some and have a long way to go. I have read about the overweight stuff and most of the time push it to the back.

You have come along way and are doing really well. The physical side of treatment has ended but the mental impact is still there. I find the counselling I’m having helps.  Remember you’re not alone you can rant to us. The WhatsApp is good and funny! And also is a great source of support. Can you talk to your breast cancer nurses. I did try someone like you which this charity offers. It was a great help in the beginning. 

Blimey this was an essay! Sorry.  You’re going to be okay. Every week there’s something new about cancer and health! Very confusing. Get through this bit THEN think about weight loss. One step at a time xxxxxx

[Jencat]

Marykamille, finishing treatment for bc can be hard. I felt exactly like you when I finished my treatment last year. I live in Kent and when I was having chemo during the Winter, my friend invited me to stay with her in Carlisle in the Summer. I thought it was a great idea at the time, but when it came to it I was panicking at the thought of travelling all that way on my own and carrying my bags etc.I think my confidence had been zapped as well during chemo! In the end I did go, but only because one of my daughter's came with me to London and saw me off on the train x

[Jencat]

Hi Daffydilly, I'm sorry you're feeling so low. I think finishing treatment is a lot harder than people who've not had bc realise. I've been having Zoldronic Acid infusions during chemo and 6 monthly since finishing and wondering if Zometa is the same thing or similar. Have you been told that it's to strengthen your bones? I've not had any problems with side effects from Zoldronic Acid x

[DiKat]

Hey daffydilly sounds like you’re feeling a bit low. Can’t remember if we have already asked you but we have a WhatsApp group now where we are arranging a meet up and generally continue to support each other as well as on here. If you would like to join us email Jayne1966 and she will add you to the group. I’m sure someone will answer about the zometa shortly. It’s not something that’s been mentioned to me. I’m currently half way through rads. It seems never ending 🤗🤗🤗

[Daffydilly]

Think this end is harder. Thought I’d finished active treatment and now have to have zometa infusions for 3years. Anyone else had this? What were the side effects like? That plus the latest research in the news today that survival chances decrease for every year being overweight have just about floored me. Might as well give up now😥😥

[DiKat]

MaryKamille 

You are right, the tail end of this is just as hard to deal with if not more so. I think we are all finding this so please don’t think you are unusual. I have good and bad days and I’m surprised how much I am still affected physically by the chemo even though it’s over 3 months since finishing. Be gentle with yourself and know that we are all still around to support you. We will have another meet up next year so maybe you will feel ready then. Sending hugs 🤗🤗🤗

[Shi]

Marykamille ❤️ Step by step darling 👭👭it’s like being spat out the other end of a hurricane 👭👭day by day and bit by bit you will put your jigsaw puzzle pieces back together ❤️❤️If you are Derbyshire or Yorkshire you can get 4 funded sessions through Macmillan for spirit and soul equine therapy if you wanted to look at that, the lady who runs it is a bc survivor herself and I found the sessions empowering and the bit of the puzzle that helped me to continue to 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Every day 😘😘be gentle with yourself you’ve been so amazing 💪💪😘😘💕💕✨✨Shi xx

[Drummerswidow]

Hi MaryKamille 

The end of all this is indeed as hard as the rest of it! I thought I could go to a conference but as the date got nearer realised that I was being a bit ambitious! I think it’s because we hope to be back to ‘normal ‘! Whatever that is.  Xxx

[maryKamille]

Sorry, Dikat and all the others for the meeting up - just not ready and it will be too far away. I thought I would cope better with the tail end of all this but it's just as hard as all the rest of it was. Can't work out where all the optimism went!

[Sunnydaze]

Hi Annie,

Im sorry to hear your news. It is indeed their loss. Good luck in finding a job, that’s a stress that you don’t need just now. Cancer treatment makes us so vulnerable.

it would be fantastic if you could come on our meet up. If you can manage it, you are welcome to the sofa bed in my    hotel room for free, if you can handle sharing a room and if it makes it  a bit easier for you to come along.

Sunnydaze x

[DiKat]

Shame about the job absolutelyannie. Their loss ❤️ I’m keeping everything crossed that something better will come along soon. Will send you details of meet up 🤗

[Drummerswidow]

Hi Absolutely Annie.

Sorry you didn’t get the job. It’s difficult managing on so little money. I hope you can meet up with us all. 

Rads is very tiring. I’m still suffering 😔. Off to St Thomas’ tomorrow for my ticker xx

[Shi]

Hi absolutely Annie, sorry you didn’t get the job, you will get one and it’s easy to think if you mention c word it’s that, I’ve not had any trouble getting work and I mention the c, when I’ve not been successful I just think next 👍and keep looking, come on girl, you’ve got a core of steel running through you, you’ll find work, just put your mind to it, because from where I’m standing your blooming amazing 👍😘💕💕✨✨Shi xx

[absolutelyannie]

Dikat

How are you? how are the rads going.  Hope all is ok.

I didn't get the job - sure it is because I mentioned the C word.  disillusioned as I need a job.  cant manage on £73 a week.  

I would like details of the meet up but I think it is up north and unless I get work would not be able to get to it.  Please message the details through and I will try to work around it.  would love to meet everyone 

Really shattered today but only 6 more sessions to go. 

[DiKat]

Hi absolutelyannie and MaryKamille 

We have planned a meet up in November and would be lovely to see you both there. Let me know if you are interested then can send you the details privately xx

[absolutelyannie]

Drummerswidow Marykamille G and Dikat

Thanks for all your good wishes.  Interview done - not too fussed whether I get the job now that I met the panel.  I was very frank with them and told them where I had been for the last 6 months.  What will be will be.  I am not looking forward to going around doing interviews.  I have fought all my life to earn my living - perhaps at a cost to my health.  

You know I was talking to another lady today whilst I was waiting for my treatment.  She has a very rare form of cancer in her leg.  To watch her walk gives me pain.  She lives on the coast and has to stay in London Monday to Friday as it would be too much to travel daily.  The accommodation is not great and she is so far away from her partner and children I felt so bad complaining about a stupid form my GP would not sign. 

It sounds awful probably to you ladies but I got a feeling we got off lightly.  I know we suffered to get where we are now but talk to other people with different types of cancer and I don't think I could cope at all like the lady today with the tumour on her leg and the professional sportsman who lived a healthy lifestyle yet got liver/rectal cancer.  

Dikat

Glad your rads are going ok.   

got to tell you all a funny story - you know us Irish like to chat!!!

I always shout "thanks driver" when I am getting off the bus as driving around London is quite tough and the drivers have 12 hour shift.  I was getting along to my bus stop and thought that bus is just going to drive off when I reach it so I am not going to run for it.  Anyway I got as far as the door and the driver shouts "come on Mum" .   A lovely cheerful young man.  Made my day it did and brought a smile to my face.  

[maryKamille]

Thank you absolutelyannie

It does put it all in perspective, doesn't it? It does make you angry if you feel, like that man, that you haven't done anything wrong in your lifestyle. The disease seems absolutely random most of the time.

I can't imagine what the tube is going to be like - but this heatwave won't last - if that's any consolation. I know some people love it but most of us are a bit too fragile for it at the moment.  I've heard of people filling a hot water bottle with ice cold water and hugging that!

Very best wishes for the interview and brave you for doing all this! xx