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Anyone starting Chemo in December 2018?

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi MaryKamille and Sunnydaze.

 

Sorry your rads have made your skin so sore MaryKamille. My skin is itching and under my arm is now feeling a bit uncomfortable. I’m 2 weeks post rads too. 

 

Sunnydaze. It’s funny how we all get different information with the Radiotherapy. I was told to cover up for the rest of the year and then to use factor 30 at least. Enjoy your holiday. It will be good to get away from it all. The scarves is a good idea. Don’t forget your hat!!! 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Thanks for the info MaryKamille 

Always useful to know what to look out for. I have an appointment with Radiotherapy on Friday. Really hope I get a start date as it’s 6 weeks since surgery and I’m fed up with being in limbo and not being able to make plans xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi MaryKamille

Thank you so much for updating .

You poor thing, that does sound really sore. I hope your skin starts to heal soon. You are right, It certainly isn’t easy.

I have got  3 more rads to go.....Fingers crossed that my skin can hold it together, it’s tender now and goes red when I have a shower.  I will just have to wait and see how bad it gets. I will definitely continue to put on loads of cream.  The radiologist told me to keep the cream in the fridge today, so I’m doing that from now on.

I wasnt originally scheduled for rads, so we went ahead and booked a holiday for the end of June, that’s why my rads finish hard up to the start of my hols!

i hope I don’t have to spend any time in A&E in Devon and Cornwall, at least I’ll still be in the UK!!!

Good luck with the healing Mary Kamille. I wish you well and I let you know how I get on 😫

 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze

 

Just come back from an unscheduled appointment at the hospital (although I phoned first). I am 12 days after the finish date for Radiotherapy and my chest is (as described by the Radiologist nurse today) 'very red'! More concerning is the blisters forming, on the part with the least flesh underneath, and one of which has opened up.

I haven't worn a bra since Radiotherapy began and certainly can't see myself wearing one again for quite a while. I keep to cotton tops, as advised.

We were told not to use Betnovate (I already had some for skin problems) and given Diprobase cream to use twice a day throughout the treatment. If your Rads were in the afternoon, you could put it on after your shower first thing, as it would be absorbed by treatment time. I didn't have itching problems at that time, it really came on towards the last week of treatment.

On the last day (13th June) I saw the consultant and he gave me Hydrocortisone Cream to use on the itchy bit (the part that would later blister as it worked out) and continue with the other one for a bit with the other parts. He warned me that the Rads treatment continues working for 2 weeks after you finish and then reaches its peak with side effects etc.

Now, after the hospital visit today, I am on Flaminal hydro cream as the blister which opened is weeping. 

Maybe I have just been unlucky. Don't leave it though if you get itching, soreness or signs of lumpy bits - that's the blisters starting to form.

Hope everyone else is getting along fairly smoothly. None of this is a walk in the park, is it?

I have got eyebrows too, and some fluff on the head. Wonderful!

maryKamille xx

 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Dikat,

I felt that I had got over the finishing line with chemo, only to start with rads and that has definitely pulled me down, but everyone is different on this rollercoaster.

Apparently,  I have to cover up carefully for two months and I will. My health is something I no longer take for granted. When I go abroad in September and October I should just about be ok, but not to wear a bikini, only swimming costume.

I will definitely have fun in the sun, but I will be extremely careful too about sun exposure etc. I’ll find this quite hard because I’ve always loved the sun and tan quite easily.

At least I have this information to keepsafe

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Disappointing about the v necks Sunnydaze but good idea from G re the summery scarves. All this 💩 takes away the carefree attitude you should be able to have on holiday but guess most of its in the planning and once you are packed and enroute you can relax!

Thanks for the information around sun cream, useful to know. Will you be ok to revert back to your v necks come September. Did the radiologist say it’s ok to do so 2-3 wks past your rads when the skin should be settling down again? Although, I’m keen to get started on rads and get it out of the way, starting to feel down about the prospect of it all! 

Have a wonderful holiday xxx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi G,

That is a great idea. I would never have thought about wearing a scarf. Love it! I’m going to treat myself to a couple of light weight scarves.

Yesterday, I was so peed off, I went into TKMaxx hunting for pretty high necked dresses and tops. I found a couple of quite nice things 🤙

I was quite upset when the radiologist showed me how high I had to cover up yesterday. Sometimes I don’t think they fully understand the impact and why should they? It’s not happening to them. I think it’s just something else we have to live with.  

Cancer the gift that keeps on  giving.... The only “C” word I’m going to use now is “CURED” and Ive got to train my brain to think this, somehow. I think I need to do some positive reading about something life affirming.

My GP told me that going away from our homes for a few days is really good for us because the brain compartmentalises problems so a change of scene really does help, the brain doesn’t take those problems with us.   It’s good  to float about and just relax!

Thanks for the top tip G xxx 😘😘😘

G
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze, this is the problem isn’t it, even doing nice normal thing, things to look forward to things, things that should be carefree things, they just don’t feel this way because of all the physical factors as well I guess the mental ones but I think switching off the mental ones for a duration is doable and would be a darn sight easier if the physical factors weren’t so prevalent.  I think you need to think that last year you couldn’t imagine ever getting to the stage of going on holiday and you bloody well have.  That is amazing in itself, I really help you get to feel how you should feel when on holiday.

 

Just on a practical level, could you take a couple of big scarves (summer ones obvs!) that you could wear with your lower cut tops a little on days when you aren’t perhaps out all day enjoying the weather? I have found draping these over dresses and tops has been quite useful in covering up as well as taking attention off the boob...I also have one by the front door in case someone knocks as they don’t need to see me braless in a vest top (minimal clothing when in house as too darn hot!) 😱

 

Anyway here’s to what I hope is a much deserved break, G x

 

 

 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Oh I’m sorry to hear this Pastamissus and thank you very much for sharing this info. I’ve got four more rads to go and I am moisturising like mad, but these things are outside of our control I guess. 🙁. Did you use steroid cream as well as moisturiser Pastamissus?

I will let you know how my skin gets on. My shoulders are feeling stiff right  now on both sides and I have just been reading that rads heighten your chances of developing Lymphoedema! 👎 So i have to be Uber careful around cuts and grazes etc.

Im going on holiday on Friday, just to Devon and Cornwall, but the radiologist has told me I have to cover up the entire field of irradiated skin. So these means no v necks, just crew necks. T shirt height, which is disappointing because all of my favourite tops have  lower necks. 

I am also going abroad later in September and October, so I have been researching sun creams.  I personally did not want one with any chemicals, so I found this one that a friend with breast cancer also recommends. It gets good reviews, is very effective and is all natural. Of course it is double the price of ordinary sun cream, 👎so of course that is a consideration, but given I now have a higher chance of getting skin cancer I personally decided I wanted to get a mineral/organic sun cream. This is the name of the company, if anyone else is interested is

“Green People”.

Sunnydaze xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Pastamissus. 

I think I’m going to have a permanent pigmented patch. Been slapping on the cream. 🙄🙄

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Re:radio - I thought I had escaped, got to the end of my 3 weeks and skin was very slightly pink, but nothing worth talking about. Then over the next two weeks it became like sunburn, I had a few small blisters but was red and a bit sore. After 2 weeks it all settled down, but skin is pigmented now. Keep moisturising!

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Sunnydaze  and drummerswidow

 

thanks for useful advice re Zometa (drummerswidow) and rads (Sunnydaze)  I dont start rads until 11th July but I have been told it will be very tiring.  CT scan on Tuesday so will get times and dates then. 

What is this weather doing! could we not have a bit of sunshine in the middle of this cursed treatment.  

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi 

I think my first appointment was for the scan and tattoos. It’s pretty straight forward if that is the case.

The cream doesn’t smell at all! I saw that in the reviews too and was a bit puzzled by it.  It’s got a bit of a non- smell like lanolin or aqueous cream, but given the amount of cream you have to apply the zero base probably works out at reasonable value. It might be cheaper elsewhere other than Amazon or they might give you it on prescription if you ask? I reckon you need a litre of cream to see you through, whatever cream you go for. I recommend it though, no nonsense soothing cream. Your skin does take quite a hit and your lymph nodes feel tender too. I’m starting to feel the tenderness this weekend ( 2 weeks in and it’s not peaked yet)

The steroid cream is also really good and I don’t know why they don’t give it out in England too. Different policies for different trusts I suppose.

The hospital told me to apply the zerobase twice a day and the betnovate before I go to bed. I have 5 more rads to go and my skin is  looking good, considering, but it’s all relative of course.

I was a little worried about the effects of rads because I’ve had a reconstruction, although it has shrunk my breast a bit, (not that anyone else would really notice.) It’s also made my breast feel a little bit harder when I lie on my stomach. This is apparently because it hardens scar tissue. Maybe it’s easier if you still have a natural breast?

I have found rads quite hard going, not physically, but emotionally it’s pulled me down, but that’s just me, everyone is different. The long term side effects are another worry too, but there’s nothing I can do about that. I just mutter the old mantra, it’s better than having cancer....Goodness ladies, the things we have had to endure..,

Sunnydaze xxx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Thanks for the info re rads Sunnydaze, really useful especially about the zero base cream. It gets very good reviews. Only complaint seems to be the smell! How many times a day do you apply it?

I have my first radiotherapy appointment this Friday, can’t remember if this is the ct scanning one or just to talk through process, was only told by the BCN Friday just gone but chemo brain strikes again!

Fantastic news about the hair. The eyebrows come back quite quickly once they start. My eyelashes appear to be coming back thicker, just very short at the moment. I’ve got my first little trim on Wednesday. It’s growing over my ears so just needs a little tidy up. I agree, a joy to see it all growing 💕🤗

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi AbsolutelyAnnie,

I hope you do get a chance to go for the interview, if you’re feeling up to it. I would ask your radiotherapy department if you can cancel that day. My radiotherapy department cancelled one of my days to service their machine and then stuck the cancelled day at the end of my treatment, so it is possible to do this. I was actually glad to have a rest day.

Good luck with taking the zometa too. Sometimes I think we are powerless, we either take the drug or risk cancer coming back. Some choice hey!

To the ladies about to go through radiotherapy. Be warned you get through loads of cream. In Scotland on the NHS you are given a cream called zerobase, an emollient cream. I have already gone through a 500g container and will easily get through another 500g. It’s excellent cream and I recommend it. I know you can buy it on Amazon. I don’t think the NHS is any better in Scotland, it’s just how they choose to spend their budget, I suppose. 

Also, if your skin is very tender ask for a topical steroid cream. Betnovate is handed out at the start of treatment in Scotland and there is a lot of evidence to suggest that application of a steroid cream prevents skin dermatitis. I think it depends on the policy of your trust, but worth bearing in mind.

I also wanted to ask the ladies who have already gone through radiotherapy what their skin was like during the two weeks after rads has finished. Does it get considerably worse during this time? I try to go with out a bra and wear a soft cotton t shirt when ever possible.

Finally, after 9 weeks of very long waiting my hair is really beginning to come through and my eyebrows too. It’s absolutely awful losing your hair, but it’s an absolute joy to see it begin to grow again, even if it is grey.

Enjoy your day ladies,

Sunnydaze xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Absolutelyannie.

 

Sorry to hear about the tooth extraction. I have done a bit of reading re Zometa and am glad I’m having it. 

You may be able to do the interview. It depends how tired you feel. Though I wasn’t happy with the Radiotherapy department they did alter a couple of appointments for me if I had appointments with the Oncologist or surgeon. Might be worth asking.

 

Looks like it’s going to be a reasonable weekend weather wise here. You’re right it does make you feel brighter in the sun 🌝🏖🏖

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Sunshine alwaysakes things better xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Drummerswidow sunnydaze Jayne1966 and anyone i have left out

 

Yes I think I will probably accept the Zometa - I have to have a tooth out next week and I think the oncologist is waiting for the results of my bone density scan. 

The good news is that I have a bit longer to wait as my radiotherapy clashes with my next appointment with oncologist.  

I am sad in a way as because I will be having builders in this means I cant start radiotherapy until 11th July which means I probably wont be able to do the interview for the job at the hospital (where I am being treated) 

Still though the weather appears to be improving - even a few days sunshine alters my perspective. 

Have a good week end 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

LB

Fantastic news - hope you are celebrating

Member

Re: w, Re: Anyone starting Chemo in December 2018?

That’s super news LB, so pleased for you.

Best wishes

KC72 x

LB
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Saw my surgeon yesterday and he was very pleased to tell me that my latest MRI shows that it has all gone 🎉🥂 yippee !!! Still having surgery next month and rads but happy happy happy with that news 🤗🤗🤗 hugs to all LBxxx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

That’s so funny, I’ve done all of the predict stuff too G, but I can’t remember any of the stats either and I’ve done it a number of times. I think this is my brain choosing not to remember. Selective memory can be useful at times with additional chemo fog!

xx

G
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Brilliant news gocat!! 

 

With regards stats, I have been all over them, reading, entering data in online tools etc but interestingly I haven’t retained any of the numbers which is strange...it’s like I was a little detached from it but needed to go through the process! 

 

Right, heading towards the end of the week ladies, two more sleeps and then a rest from appointments for us all  🙌

 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Pleased you’ve had some positive news gocat, what a relief 😅💕

Thanks for the link Sunnydaze 🤗

I don’t know how I’ve managed it, cos normally like to know everything, but I haven’t looked at stats once....way too frightened I think. I do understand that some of you need to do this though, especially if weighing up whether to have a particular treatment.

Hope everyone gets a good nights rest 🤗💕

Member

Re: w, Re: Anyone starting Chemo in December 2018?

That’s great news Gocat 👍👍👍😍😍😍 What a relief ❤️💖

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi everyone.   Been good news week for me so far.  I had 2 scares checked out.  One was post menopausal bleeding.  Had ultrasound scan and was recalled to have hysterscopy on Monday, but consultant is happy there is nothing untowards Smiley Happy    Secondly had check up today for new lump I found near my recon scar.  Had ultrasound scan for that today and its been decided the lump is just fat necrosis.  

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi ladies,

whilst having rads today at the hospital Macmillan had a stall there The Macmillan ladies gave me this free recipe book. I’m posting the link here because it’s a really excellent cook book, with quick healthy and mouthwatering  recipes. I’m very happy because I love cooking 😍

I think you can either download the book on line, by clicking on this link ( if it works) or even better order a free copy. I think it’s fab!

Sunnydaze xxhttps://be.macmillan.org.uk/be/p-22480-recipes-for-people-affected-by-cancer.aspx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Good luck with making decisions re; zometa. It sounds tough. These drugs are forced upon us, often with unpleasant side effects and we just accept it, in fear of the cancer returning again. 😘

I’m glad you didn’t let your reading spoil your day Drummerswidow. I love your defiance btw.

AbsolutelyAnnie , you didn’t upset me at all. Its just a reality we have to face. I hope you are ok?

Sunnydaze

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Sunny daze, absolutelyannie and MaryKamille.

 

My Oncologist was quite keen for me to have the Zometa. Spoke with my dentist and he said that the jaw damage was extremely rare so I decided to go for it. I think everyone’s treatment plan is so individual. 

 

As for the chemotherapy, my percentage was 11%. Both the Oncologist and her registrar said that if it was them they would have the chemo. I haven’t let my reading spoil my day though! 

 

I’m off to a Bosom Buddies meeting this evening! Should be interesting. I’ll let you know how I get on.

Good luck with the Radiotherapy planning xx

 

 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Marykamile your mobile phone number. You will need to have WhatsApp installed for it to work x

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi absolutelyannie

 

I am in the same position as you over Zometa. I had not realised at first that it is the same thing as Zoledronic Acid. I am seeing dentist tomorrow to OK me for it. She's dead against, already said, because of the possibility of jaw damage. But that is rare and there is no alternative to Zometa - so I have been told - for bone protection and repair. At least my oncologist put off starting me on it with my 6th Chemo and allowed me to wait until all treatments were finished before I make my decision and only after I have seen my dentist again. I think I will have to go for it.

I don't look at stats but when I had my Radiotherapy (now finished) there was a leaflet in the waiting room which another patient drew my attention to. It said that Chemo gives on average a 2% better outcome but Radiotherapy is 16%. That upset me for a bit - why all that suffering for 4 1/2 months on Chemo, for so little return? - but now I have calmed down and I am just going to ignore it all. 

In the end we have to trust the oncologist I suppose and they do look at us as individuals with unique problems.

I had a letter today from Gynaecology and my ultrasound on 11th June shows my ovaries are still looking OK and she is happy to let it rest. Meaning close the file. One more issue I won't worry about!

Hope Radiotherapy planning goes well for you and you get your schedule soon. xx  

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Jayne

 

Thanks for your message here. I am going to sound really thick, but what do you mean by my 'number'?

Will do it if I know what it is and I can work out what I have to do! xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

I'm definitely not going to look at stats. Too frightened already and need to be positive. 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

sunnydaze

 

Sorry I hope I have not caused you any hassle. I am guilty of bringing the stats here as I am weighing up the risks against the benefits of taking Zometa. 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

drummerswidow 

I was guilty of bringing stats on here.  I was trying to weigh up whether I should take the Zometa that oncologist wants me to take.  It would reduce the risk of recurrence by 2% in my case compared to 7% hormone  and 8% after chemo.  I am trying to get away without Zometa but as I have thinning of the bones already it may be a good idea for me.  

Totally agree it is not a good idea to look at the stats.   

Off to my radiotherapy planning meeting today.

Member

Re: w, Re: Anyone starting Chemo in December 2018?

I know, it pulls you down looking at stats Drummerswidow and takes you to a dark place. I think we have to learn to shut it out , go into denial and live, some how !

Big hug to you girl xx

Also Shi, thanks for the advice, don’t worry, I know you have put our best interests at heart, but I would not compromise our safety in any way.

Sunnydaze xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Morning all! 

 

Someone said something about percentage of survival with certain treatments. I can’t remember whether or was on here or something mentioned in passing to me. This forgetfulness is getting on my nerves! 

 

Anyway me being me, I looked at the Predict site for my scenario. Well that has the potential to ruin my day! I always say I’m not a number so really wished I hadn’t looked 🙄🙄🙄😳😳. 

 

All I can say is I’d better be feeling better soon. I’ve got a lot of bucket list to work through in a short space of time! 

Shi Community Champion
Community Champion

Re: w, Re: Anyone starting Chemo in December 2018?

Hi sunnydaze, just a reminder to pm marykamille on any meet up plans or anyone else who can’t whatsapp, not on this page as it’s open to the world. Keep safe ❤️💕💕✨✨Shi xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Great LB. It feels great to finish chemo.  Rest up though! xx

G
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Brilliant LB 🙌🥂

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Congratulations LB, yes a big milestone hit 🔔. Hope you feel up to celebrating soon 🥂 Can safely say my taste for alcohol has definitely returned 😂xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Congratulations LB 🔔🔔🔔🔔 You smashed it  ❤️ Well Done and enjoy a wee drink when you’re up to it.

gGreat you got the message xx

LB
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi kc72 

thankyou I have celebrations in mind that will involve booze 🍷🍾🥂🍻 I hope it won’t be too long until I am able 🤣🤣 🤗🤗🤗

LB
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi sunnydaze ignore my last plea and subsequent messages - I put my brain into place and discovered how easy it is to message - who knew🤣🤣🤣🤣 xxxx LB 

Member

Re: w, Re: Anyone starting Chemo in December 2018?

That’s fab news LB. Yippee indeed!

 

Take care of yourself, and hope you take a moment to mark that massive milestone when you feel ready. 🥂 😊

KC72 xx

LB
Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Sunnydaze how do I find your message? I haven’t tried that yet 😏 Thankyou xxx

 

yippee I have just had my final chemo 😃😃😃😃 Still got to go for wonder drugs but a big milestone hit 🤗🤗

hugs to all 🤗🤗🤗🤗 LB xxx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Do send your number maryK as there is some nice chat on the other group and only about 3 not in it. If you don't have or want to Dow load WhatsApp then like sunnydayz said we will keep you up to date on here. 

AAbsolutely Annie has sent me her number but unfortunately doesn't have WhatsApp at the moment. X

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi MaryKamille 

Pleased you enjoyed LGFB 😁 Hope you continue to enjoy your early retirement and will be lovely to meet you when we all eventually get together xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

That’s great you got the message Mary Kamille and that you might want to meet up too.😍 If you don’t do WhatsApp, we can keep you up to speed with any plans, I’m sure via this page.

Also, I sent LB a private message too, to join the group. I hope you got it LB.👍

I think we’ve got everyone else, but if you’re interested in a meet up, please message Jayne and she will add you to the group.

Sunnydaze xx

Member

Re: w, Re: Anyone starting Chemo in December 2018?

Hi Jayne

 

I got your private WhatsApp message but don't know how to do those in reply. I hope I might make a later meeting and thanks for including me in that possibility.

I'm lucky in that I retired very early and don't have to worry about jobs any more. I hope work situations generally are helpful these days, especially with what everyone is going through in treatments. They say it takes 2 years before we are anywhere near recovered and of course there's no going back to exactly what we were before. Hope your boss is fully aware and ready to accommodate you.

I finished last Rad on Thursday 13th and had my Look Good Feel Better workshop this morning which was great. Picked up some other booklets though which relate to what to do when treatment is finished. Strange how quickly you can move on mentally to the next bit. I do feel a bit abandoned. Why? I wanted this all to be over and pushed behind me!

Will you try something else when you do feel up to returning to work? Maybe that's part of the changes that can take place.  xx