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April rads anyone?

41 REPLIES 41
tat4tit
Member

Re: April rads anyone?

T3D, so sorry you are dealing with brain mets.  There's a very active, supportive and informative board for those diagnosed with secondary bc (I have secondary breast cancer).  I know you will be warmly welcomed and find information and support there. Hugs xx

SuzyEB
Member

Re: April rads anyone?

Hi Lizaki. I finished rads on 19/04. I had a boost fir the first 8 sessions. They taped a gel pad to my chest. Once I was in position it was ok. I was extremely tired by the end of the treatments. That is starting to ease but I have had blistered skin in several places. It has also split. The area they used the tape on has been the worst as I have an allergy to the tape they tried first. My shoulders were ok but felt very stiff immediately after. Hoping that the rednesss starts to lessen soon. All the best with the rest of your treatment. Xx
Lizaki
Member

Re: April rads anyone?

Was due to start rads on 11th April (15 rads and 5 boosts), but than the team changed their mind and decided to give rads with integrated boost.  I went in on 11th for a second planning session,then started on 13th April with 15 rads with integrated boost (so no boost at the end).  Anyone else had experience of integrated boost?  It makes the session longer, and the position I am in makes the other shoulder (not the side operated on) very painful.  Am now on extra strong pain killers (co-codomol and tramadol together) which delays the pain until the last few minutes.  No side effects yet, except for feeling a bit tired.

T3D
Member

Re: April rads anyone?

Had my second rad treatment today - second time around for me. I'm having a whole brain radiotherapy for secondary brain tumour breast cancer - cannot believe how tired I am slept most of yesterday and all afternoon today! Anyone else having the same threatment? 

Scareym
Member

Re: April rads anyone?

Hi

 

I am having 7th Rad today and like you any side effects will be from rads only, I havent had the shivers, have been tired which i thought would start later but i have been told  it can start right from the start. Last night I started with more aching under my arm similar to when I was recovering from WLE. This morning it just feels bruised. I am not worried though as looking on the forum i have read others have had loads of different side effects. 

 

Have a word with the team when you go in today and just ask them if its normal, I do feel though that it is really hard to work out what are effects from the rads and what is effects of travel to hospital everday , lying on a bed in a strange way and being moved around by people. 

 

Good luck for the rest of your rads.

 

hugs Mary x

 

Aggielou
Member

Re: April rads anyone?

Hi all you April rads ladies

Today had rad number 3 out of 15 ( haven't needed chemotherapy so any side effects will only be associated with radiotherapy) 

Am aware of the side effects of sore skin and tiredness which apparently happen more as treatment goes on. Just wondered if anyone has felt a bit shivery when they get home and then at times through the day- that is what's happening to me but don't know if it's cos have got bit of sore throat that was starting just as I commenced rads on Tuesday( only a mild one though) .. Or could it be the radiotherapy? Any suggestions welcome.    X

Jobey68
Member

Re: April rads anyone?

Congrats Suzy!! 🍾🍾🤗🤗

Jill1998
Community Champion

Re: April rads anyone?

Well done Suzy!!!!🍾🍾🍾🍾
SuzyEB
Member

Re: April rads anyone?

Cocktails being imbibed. Heat from chest causing quick melt. Doing a very gentle jig to celebrate!xxxx

SuzyEB
Member

Re: April rads anyone?

Am keeping the frozen cocktails until the last rads on Tuesday week. All gels and creams kept in fridge so super cold when they go on. Not sure about the slapping on, more gingerly rub. Xx
Bibi44
Member

Re: April rads anyone?

Ha glad I am not the only one with an overactive imagination! I seemed to have a lid on it during the day, when rational brain was in charge, but it definitely used to run riot whilst I was asleep if my dreams were anything to go by. Hope you had a ta ra seroma party. That's really brilliant news. Keep slapping on the cream next week. It really heals quite fast once the week after rads is over. x
SuzyEB
Member

Re: April rads anyone?

Seroma has gone. Hurray. It was the onc who brought up the link with asthma. He did say it normally hits after treatment has finished. He thinks it may be s combination of both that's causing the problem. It is worse just after rads and eases at the weekend. I'm glad I haven't imagined it being bad with Herceptin. I, like you have been imagining that the cough was lung mets. Had to have a good talk to myself that I'd have other effects as well. Just want it to finish soon. I almost gave into the Google monster about bc and lung mets. !!!!!! Feeling ok now. Xx
Bibi44
Member

Re: April rads anyone?

Good point Suzy.  I'm asthmatic & do have inhalers & my lungs did not appreciate rads one bit.  I had a terrible, non stop dry cough for 4 1/2 weeks after.  Started a week after rads, day & night ...in the end I increased my preventative  inhaler & it's just stopped a day or two ago.  I asked the BCN & she said she hadn't heard of that, but it is listed as a SE.  Started having lung mets dreams, even though I knew logically that it was the rads.  Woke up one night in tears, I had just been in the middle of fighting off the chemo team from starting me on lung mets chemo.  Mad or what!  I also asked the chemo nurses about the Herceptin hitting you like a truck on rads.  They said they had never heard of it, but you, me & Ange have had it, so obviously not too unusual.  How's the seroma? xx

SuzyEB
Member

Re: April rads anyone?

Hi Bibi, still got a week to go. Skin holding up well. Saw onc today and he thinks thr combination of rads and Herceptin have aggravated my asthma and have to go back on inhalers. Have not needed them for several years so a little peeved. The alternative is worse. Hope it's only a temporary issue. Glad you're getting on with tennis and that golf will come back slowly. Onc said I'm ok to start my upper body work at the gym but slowly. All in all a good day. Have a lovely weekend. xx
Bibi44
Member

Re: April rads anyone?

Suzy just popping in to say my reaction to my Herceptin was back to normal this week i.e. Didn't notice it really, so it's just the ones during & shortly after rads that have been hard.  I'm 5 weeks post rads & managed to play tennis for half an hour yesterday.  Golf is still hurting though, so exercise seems to be another 'feel your way slowly' thing. Hope your rads are nearly done now & that you are not too tender.  Have a nice weekend all. xx

yjk
Member

Re: April rads anyone?

Hi Suzy,  thanks so much for the tips, will definitely give them a try.  Good luck for the remainder!

xx

SuzyEB
Member

Re: April rads anyone?

Hi Yasmin. I've been using Sorbaderm, R1R2 gel , Dr Organics double strength Aloe Vera gel and E45 creams. Find R1 gel immediately after rads has helped reduce the heat and the redness. It's very sticky but works for me, mind you I've also been sitting with the ex boob side exposed when at home and also sleep with chest exposed. Living on my own has some advantages. Hope you find something that works for you. I've just had rad 5 and loving crossing them off on the calendar. xx
yjk
Member

Re: April rads anyone?

Hi there, I had my first of 15 today and have been a little worried about side effects but reading how well you ladies are coping has made me feel much more positive.  I finished 7 cycles of chemo last month, 4 EC and 3 T  and having coped OK with 6 cycles, the last one really blew me out of the water and I'm still struggling with the side effects - which has probably made me more stressed than I need to be about radiotherapy.

Any tips about what creams to use would be great - my consultant recommended Biafine which I've started to use and I've also stocked up on Aveeno skin relief lotion, but would love to hear what's working for others.

Yasmin xx 

Deeejayd
Member

Re: April rads anyone?

Hi Karen,  For me Tamoxifen is OK.  I had really bad hot flushes straight after the 1st op and tbh 6 weeks into taking the tablet I feel the flushes has settled a lot.  I feel I am easily emotional which I'm blaming for tablets for.  oh and I now have weetabix with a banana for breakfast!  My CNS told me to take it before I go to bed so any effects are when I'm asleep.  Hope that helps 🙂  Well done for signing up.  I've never been able to run.

Karenbarrie
Member

Re: April rads anyone?

Hi Deeejayd , tell me about the tamoxifen , how are you on it , I've heard of so many side effects and dreading taking it - I start after I've finished rads ! Well getting back to the gym and classes , 8 weeks after op and still can't run or bounce around , doing cross trainer and bike and lower weights , I'm sign up to do the 10k race for life in June got a feeling I'll be walking it !!
Deeejayd
Member

Re: April rads anyone?

Hi Karen,  I know how you feel, 2 ops later and he says he has removed it all, margins now all clear.  I still feel the 'cord' in armpit but am doing the exercises to hopefully lessen the strangeness of feeling still in the pit. Not looking forward to next week though as they say the effects will come out more ;(.  I do realise that I have not gone through as much as others I have read though. 15 rads in total and started Tamoxifen on the 24th Feb for the next 5-10 years. Like they say, 'everyone is different'.  I have no shoulder/arm pain anymore but I do the exercises as much as they say to do them and I am also back at gym classes (ppl cannot believe this tbh) yoga and Pilates to start with for a couple of weeks then i've done 3 aerobic classes which make me feel more like myself. 

Karenbarrie
Member

Re: April rads anyone?

I started on 30 march , 20 altogether, (15 normal then 5 booster) , 3 down and 17 to go! Finding it ok , boob a little sore , but a lot of shoulder pain/discomfort is this normal? Just want to get back to normal my oncologist said after they did the op I no longer had cancer but now it seems weird as going though cancer treatment kind of in limbo?
Bibi44
Member

Re: April rads anyone?

Hi Suzy I found the Herceptin really hard during rads, but it only lasted the one day for me.  The next one was also tough in the post rads period, but different ... Milder (smaller truck .. transit or white van rather than juggernaut perhaps 😀), but did go on for 2-3 days. I have my next one on Monday (4 1/2 weeks post rads) & hoping it's not so bad. All the best for the rest of your treatment & to the other ladies.  Hi Tat great to hear how well you're healing. xx

SuzyEB
Member

Re: April rads anyone?

Had number 4 yesterday with the double whammy bonus of subcut Herceptin. Feeling like I've been hit by a bus. Very tired and (tmi alert) bowels that could get medals at Olympics. Thank goodness for a weekend off. At least the weight loss is helping clothes fit again. Ex boob is back to usual colour and the prickly heat effect has gone. Hope everyone is enjoying a peaceful weekend. Xx
Deeejayd
Member

Re: April rads anyone?

Thanks SuzyEB.  I had my 4th rads today, i'm a bit pink, very hot and a bit swollen, can't drink enough water and moisturing with the cream they gave me.  I have aleo vera gel and the lotion but not used yet - thinking about it though.  I have a achy bit in the non poorly boob and don't know why as radiologist did check and only one being treated.  

tat4tit
Member

Re: April rads anyone?

Hi ladies.  Popping in from Feb rads, hoping to encourage you....

 

I had 33 fractions, starting 2nd Feb and finishing on 21st March.  I had an mx on 26/11/15 with removal of most of my pec muscle for primary angiosarcoma (hence the high rads dose).  I was terrified of rads as I have very little flesh left there, but my rads team stayed one step ahead of any problems.  After 2 weeks my stump felt swollen, burnt and bruised so my team started spraying it with Cavilon (used for pressure sores and incontinent bottoms!).  It gave huge relief from the burning sensation.  After 3 weeks I was beginning to question whether I could finish the course - the travel, having to clock watch every day, the reality of my diagnosis all seemed to hit me at the same time and I was very low.  My rads team gave me PolyMem non adhesive dressings and advised me to dampen them with cooled, boiled water. I got a further supply from my GP (they are expensive and not actually on my pct prescribing list, but my GP was very understanding given my rads marathon).  I am sure PolyMem and regular pain killers are how I got through all my rads.  Some evenings I would sit with a bag of ice on top of the PolyMem to cool my stump and calm the prickly heat type rash, but most of the time, damp PolyMem was enough on its own. I hate the slightly sweet smell of it now, but nearly  2 weeks post rads now I am healing really well and still using PolyMem as it makes it possible to wear a bra and foob.

 

I realise every hospital has different protocols, but there are things out there that can make rads less uncomfortable.  Good luck 😀 X

lizzieb
Member

Re: April rads anyone?

Hi Lizaki, yes I have had 15 rads and 5 boosts owing to my age. Last session of 20 today. Am happy to chat to you about it if it helps. I looked up research beforehand to decide whether the additional boost was worth it and concluded it was. It can be v effective in preventing recurrence, especially in anyone under 50. To be honest, it has been easy as the 5 boosts are just to a small area where the tumour was. The worst part were the last few to my whole breast. The radiographers have been brilliant at making sure I'm OK and comfortable every day and giving me creams etc as needed.

 

Happy to chat if you want to know anything, just ask.

 

Lizzie (from the March board)

SuzyEB
Member

Re: April rads anyone?

Had number3 today. Mastectomy scar starting to look a little red. Chest feels like prickly heat at present and looks slightly pink. Coated in aloe vera gel and barrier cream. Have to say I'll be glad for 2 days off at the weekend. Do feel a bit tired but am putting it down to the travelling to and from the unit. This is not as hard as the chemo. Famous last words! !!.
Scigib I also had major problems with chemo, with neutropeania, hosp admissions, infections and a lovely allergy to adhesive dressings. Rads so far have been easier. I'm going along the line of swimming in moisturisers and cooling gels. So far pink chest is the worst. Hope all goes well for you. xx
Deeejayd
Member

Re: April rads anyone?

Hi All, I posted the following in March rads so apologies; 

 

Hi All, day 3 of 15.  Moisturing like mad.  Wondering when the 'nuclear boob' will strike??

CatherineJ
Member

Re: April rads anyone?

Hi Lizaki, I had rad no 9 today and am fine. Only side effect is tiredness and today for the first time, a little redness. I put Bio oil on twice a day, every day and it seems to help so far. I go tomorrow for my second planning appt for the 'boost' too. Will let you know how it goes. Good luck. xx
scigib
Member

Re: April rads anyone?

I started on the 30th so I have had two and it is painless. I feel a bit nauseated this evening but I have plenty of anti nausea stuff left over from the chemo. The Chemo was awful, I had pretty much every side effect going.

Blood clots, neutropenia, systemic infection and the appalling pain from the immunity boosting injections. I had to take morphine for two days. IV antibiotics, blood thinners than I was allergic to the heparin based  injections. So I hope that the radiation isnt too bad.

Lizaki
Member

Re: April rads anyone?

I start my rads on April 11th, so will pop into the forum when I start.  I have three weeks of 'normal' rads and then a week of boost treatment.  Anyone else out there with experience of boost?

Jill1998
Community Champion

Re: April rads anyone?

Everyone is different in how they react ,most people don't have any long-term side effects ,most side effects are short term .You can get swelling or shrinkage to boob,but my swelling settled after a few weeks.I still have tenderness to my ribs 6 months after finishing but no other lasting side effects .There are significant gains from radiotherapy in terms of stopping a reoccurrence.You should discuss your worries with the radiographers when you go tomorrow .
Dezdi
Member

Re: April rads anyone?

thank you very much. I got really scared of the side effects and because I am really young don't know what to expect and how it will effect my life when I finish. 

Is there any long term side side effect? I have read that they get pain after radio. or get smaller the breast. 

Jill1998
Community Champion

Re: April rads anyone?

You can get very tired after first week but people dibs irk through it,you will have to see how you feel.Side effects are tiredness (drink lots of water that helps) and soreness /rash itchiness on treated area.They will give you advice and creams etc to help with the side effects .
Jill1998
Community Champion

Re: April rads anyone?

It's very understandable to feel daunted by it.It is not nice going to hospital every day and being reminded of cancer ,but after the first few sessions you do get a lot calmer and just get into a routine .You tend to see the same staff and patients every day and actually it is very friendly and supportive .Think we all had some wobbly moments,particularly when you are left alone for a few minutes when you have your treatment and your mind can wander to negative stuff.I developed some nice fantasies to think of for the 3 mins or so during treatment ..good luck!
Dezdi
Member

Re: April rads anyone?

Hey

 

I start my first radio tomorrow. I am so scared, I don't know why but I have bad feelings. Is there any bad side effects? Could I work with it. it is so scary to go to the hospital every day. I feel really upset about it. Is radiio really necessary?

Many thanks.

SuzyEB
Member

Re: April rads anyone?

First one down, 14 to go. It was really easy. Just took a little while to get set up but then very quick. Chest feels a little warm. Also got a reaction to the tape for the pad on my chest.
Takes 45 mins to get there and only 15 mins then home. Mid afternoon appt so no time for treat afterwards but did have a Chinese takeaway for dinner. I did have a wobbly moment as I went to get changed and wanted to walk out but that soon went. Xx
Jill1998
Community Champion

Re: April rads anyone?

It is really easy to get hospital transport to rads appointments if you are worried about driving in 3rd week.Very often you have your own private chauffeur !!You just ring when you have finished and they come pick you up.They give you number to ring at your planning appointment .
Kmk66
Member

Re: April rads anyone?

Have my initial oncology appt tomorrow to discuss starting and have a check up. I expect to be starting around middle of the month so will take tips from you ladies starting now.

 

little worried about the driving to and from the hospital everyday especially as I get in week 3 but will see how I go. 

ali b b
Member

Re: April rads anyone?

I am 14 down, just one  zap left. The radiotherapy is pretty easy. You dont feel anything, and only takes a few minutes. so physically, its easy. I found it a bit harder to get my head round, as you cant see or feel anything while its happening. You know its doing something, but you cant tell what,   and you dont know how bad ( if any) sideeffects you will get. Personally, I found that harder than dealing  with my diagnosis, and surgery- but we are all diferent. I am three weeks in, and apart from a sore nipple( sorry to be blunt, but its awful), I feel fine.  Big tip- take a buddy to distract you while you are waiting, and reward yourself with coffee/cake/brunch afternoon tea, or whatever your appointment schedule suggests. I am very independent, but found the moral support more important than i thought I would. You'll be fine!

 

SuzyEB
Member

April rads anyone?

I'm starting my 3 weeks of rads tomorrow and yes I know it's still March. Not sure what to expect. Just starting to feel a little anxious. Xx