Radiotherapy July 2019

[Pjf0265]

Thanks Seaside  Sar,

I had a bit of a day when I had the tears as had another appointment in the afternoon for another separate problem which requires more surgery !!! This will be done in September or October ! That will make four lots of surgery this year and one in October last year ! Just want my body to be feeling like normal again ! Most of the time I am positive though ! 

20 sessions - yikes ! Hopefully it will go quickly for you , lots of hugs coming your way x

enjoy your weekend too xx

[Seaside Sar]

Hi everyone,

Sounds like we're all ploughing through this. 

I'm now officially halfway, having had 10 out of 20 sessions. They measured me up for my boost sessions the other day which was an interesting experience. I got a full on physics lesson from the radiologists. The attachment they use for the boost actually touches the skin and it's really cold! The good news is, I won't need to do the breath hold technique for those 5 sessions.

Lots of you are saying the tiredness has hit you and I must admit, that bit has floored me totally. I can't go without my afternoon nap! Luckily my skin is still fine - long may that continue.

DiKat, how are you doing? How many sessions have you had now?

Oots, let us know how you get on with Tamoxifen. As for a celebration, you definitely deserve that. You've gone through so much in a short space of time. 

Pjf0265, it's so understandable that you had a moment at your rads session the other day. I think we don't give ourselves time to process what we've been through so sometimes it will just hit you out of the blue. It often just takes someone to be kind to you and that's enough to set you off. I'm still waiting for my big breakdown which will probably happen when I least expect it. Hope you're OK now.

You mentioned joint pain. I haven't had that but I am finding my arm gets a bit stiff and sore, which is probably from the position I have to lie in. I also find my shoulder hurts a bit when I try to sleep on my side. I haven't started my tablets yet but I am not looking forward to it as they are meant to affect my joints. I'll be on Tamoxifen for 10 years.

Sandra11, welcome to the group. Sounds like you have a long day with treatment being so late and then the journey home. Are you finding you need a nap during the day?

Nellie McNelly, hope the session goes well today. Never heard of a bolus. The boost I'm getting in the final week is called proton beam radiotherapy whereas up until now I've had the image guided technique. It's amazing really how all this equipment works.

Hope everyone else is OK. Enjoy the weekend. Xxx

[Pjf0265]

The radiographers were so lovely today( as they always are )  , I had a major blub just as they were positioning me for the radiotherapy! They were so understanding ! 

They said that I mustn't feel ashamed , it's quite a common occurrence ! They are often stopping to give people a hug and chat to them and there is always a box of tissues at the ready ! 

What am I like !!! 

[Sandra11]

Pjf0265 - I’m going to Leeds each day and all my appts are late ones - 5.30ish. Not ideal as it makes for a long day. However someone has to have the late ones! 

2nd one done and I feel all the team are my friends already.  They are so lovely and certainly help to make an anxious situation easier to cope with. 

Keep moving forward ladies!

😀

[Oots]

Bolus? That is interesting. i have not heard that expression. Mine is done done surface guided and I don’t have a tattoo. And then there is the variety where you have a tiny tattoo. It is all very interesting and I keep asking questions about the instruments and how it all works. As you say, every day a school day. 

I have now 10 out of 15 done and I am unbelievably tired. I go to sleep,every afternoon when I come back from hospital. And I have NEVER been a snoozer in all my life. I had no idea I could sleep during the day unless I was seriously ill. And there is a slight tenderness to the skin but apart from that I’m OK. 

My oncologist has said he would leave it to me when I start tamoxifen sometime during the radiotherapy. I decided to start on Monday. That way I have a bit of time to see if I have side effects to report to him at the next appointment.

Anyway, next Friday, a small celebration will be due. Diagnosed in January, mastectomy in February, chemotherapy starting in in April, radiotherapy in July. I feel I was swept away by this wave, having handed my body over to the medical profession and I am hoping to gain some control again soon.

[Nellie McNelly]

Another session done today - so 9 down 6 to go.  I've got an early morning session tomorrow to make up for the one I missed on Monday due to the machine not working.  What a treat.  All still ok - still tired and definitely pinker and a bit sore (despite frequent moisturising) and my temporary implant feels much tighter.

Have had today's and yesterday's treatment with a bolus.  I had no idea what that was going to be - but it's basically a pliable kind of soft plastic sheet that they put over the area to be treated before they do the zapping.  Every day's a school day. 

[Pjf0265]

Yes I have just under an hour each way too ! Also have to get to the hospital extra early too to guarantee a parking space as Exeter hospital so busy ! I am lucky that I have had friends and family to take me down each morning! Usually someone different every day which has made it a better journey! Where is your hospital?

[Sandra11]

Aw thank you. I’m bracing myself for the tiredness. It’s an hour’s travelling each way so that won’t help either!  Good luck for your last three - you’re nearly there! x

[Pjf0265]

Well done x Hopefully it will go really quickly for you ! I have three treatments left ! Feeling really tired and very emotional tonight! Been a long day ! 

Hope all goes well for you ! 

[Sandra11]

Never posted before but feeling the solidarity with you ladies!  It was my first one today. I was very anxious about it but thankfully it was all rather uneventful!  Wish I hadn’t worried so much. The team were lovely, the breath holding was fine and I’m relieved to finally get started. 14 more to go. 

Hope everyone is doing OK and thanks for sharing your experiences. It really does help. 😀

[DiKat]

The travelling doesn’t help does it! My appointments are all around 4.45. It’s about an hours drive but took about an hour and a quarter with it being teatime traffic. Hey ho, 1 down 19 to go 😁

[Jewels994]

It’s going ok with me thanks. I am tired but I think that’s more to do with the early mornings and the travelling back and forth to the hospital. I’ve done 6 sessions now, another 9 to go. It must have been emotional seeing someone ring the bell, I’ve not seen anyone do it yet. 

[DiKat]

All good thanks Julie. No problem with the breath holding 😁 It’s all very space age isn’t it 😂 

I did get really emotional in the waiting room beforehand. A lady was ringing the bell and had lots of family with her. Lovely to see. These waves of emotion just take over at times. 

How is everything going for you? Xx

[Jewels994]

Hi Dikat, hope your first session went ok and you managed the breath holding. 

Julie xx

[Pjf0265]

Hi Seabreeze , 

Thank  you for replying so quickly xx

My shoulder is aching and my knees and hands are stiff ! I am thinking that the Letrozole may be causing it although been on it since January ! Also I have  put on a bit of weight which might also be affecting my knees ! 

I am still doing my shoulder exercises so that should help that ! Think also very tired  and possibly a bit run down ! 

It will get  better xx 

[Seabreeze]

Hi PJF,

Radiotherapy to the breast or underarm doesn't usually cause joint pain, whereas Letrozole does in some people. Which joint/s are painful?

Seabreeze

[Pjf0265]

I am beginning to get joint pain and wondered whether it's radiotherapy related or due to the Letrozole I am on ! Hope that you feel more comfortable soon xx

[nickyg26]

Morning everyone

I had my 8th (out of 20) session yesterday and it all seems to be going ok. My skin is holding up well so far but I’m noticing I’m getting tired. I’m trying to drink 2.5 litres of water a day so maybe my tiredness is down to all the trips to the loo! 😂

I hope everyone else is doing ok.

Nicky xx

[Oots]

Today was my 7th (out of 15) session and I feel the skin getting quite tender. Not even sure it’s the skin. Could also be the tissue underneath. I still have very little sensation in the remaining skin after the mastectomy which makes it hard to differentiate. 

I also notice the reappearance of joint pain. A few years ago I started to get joint pains, usually hips or knee but not continuously. While on chemo, nothing at all. Now, as the drugs disappear slowly from my body, my right knee is flaring up badly. It’s the soft tissue around the joint tat is swollen. I wonder whether this hormone related and, while on steroids, no problems noted. Will have to quiz my oncologist. Has anyone else noticed this?

Oots

[Pjf0265]

It's such a scary experience to be going through and yes the same for me that it suddenly hits you ! It tends to take over your life ! It doesn't help that I am not working at the moment so am a bit apprehensive to know what I shall do when all the treatment  is over ! Rads have been going ok , still very tired and my breast very swollen ! It's being kept an eye on which is reassuring ! 

Good luck with the rest of your treatment xxx

[Nellie McNelly]

Should have been session 6 (of 15) for me today but the hospital phoned to say my session would have to be cancelled for today as they had a problem with the machine.  They have just called to say that they are still waiting for a part so I need to go to another (further away) hospital for my session tomorrow and also have a session on Saturday.  Heyho.

I'm feeling ok - but, like you, more tired.  Nowhere near chemo levels of draining exhaustion though.  

I am happy to be getting through treatment but every so often find that my experience of the last 9-10 months hits me like a ton of bricks.

[Seaside Sar]

Hi everyone,

Glad to hear all the rads are going well.

I've just started week 2 of 4 and I am exhausted! By Saturday I felt terrible but the radiologists have assured me this is normal. It's still a lot easier than chemo but I am shocked at how tired I've been.

Touch wood, no skin problems so far. Have been using Aveeno twice a day.

Hope you are all having a good day.

[Oots]

Hi all

10 more to go for me. It feels definitely like the easiest part of the treatment for me. I feel I’m on the home straight. Holding my breath is fine but I am also getting tired and some days I have a nap when I get home. That’s highly unusual for me and I am unsure why. It’s clearly not that bad a treatment and the journey is only 2 hours there and back. I wonder if it still has to do with fatigue after chemo and perhaps feeling a bit more relaxed for the first time in ages? Or is it real?

Oots

[Jewels994]

That’s great, over half way now. I’ve only had two sessions but have managed the breath holding okay so far

Julie xx

[Pjf0265]

Hi there,

Another seven rads to go through . The breath holding is sort of getting easier although I am developing a bit of a cough but hay fever kicked in too !!!  Are you feeling tired ? That is the biggest problem for me at the moment ! Have been advised to drink lots to help it but find that I do sleep in the afternoons after coming back from treatment !

Good luck with everyone's treatments xx

[Jewels994]

Hi reallyzeb and absolutelyannie, did you have your first session today? Hope all went ok for you both

Julie xx

[Jewels994]

First session went ok, managed the breath holding

[absolutelyannie]

Jewels94

same as me but I get the 5 booster rads at the end.  so I continue until 7th August. 

Hope your first ones went well today. 

[Nellie McNelly]

It seems that nothing is straightforward in this treatment malarky is it!?

[DiKat]

I’m pleased the machine cuts out Nellie. I’m trying to practice and it seems the more I think about it, the harder it is. 😂

[Nellie McNelly]

Just back from round 3 - all still OK.  I'm doing the breath hold thing.  It's probably different for everyone but I have 3 zaps during my treatment session and I reckon I have to hold my breath for about 22 seconds for 2 of them and about 25 seconds for the 3rd one.  The tricky bit for me holding my breath for that period of time is that it's not a full lungful - it's about (I reckon) 80% capacity.  So - if you're going to practise at home (!?) beforehand just try doing it on less than full lung capacity.

The machine cuts out if you start breathing so it's not a problem if you can't hold on.

[DiKat]

Looks like there is a few of you starting RT tomorrow so just wanted to say good luck to you all. Onwards and upwards 💕xx

[DiKat]

Well done Jackie 🤗 You have that well deserved rest before returning to work xx

Seaside Sar, yes chemo is definitely the worst part and we can do this 💪 xx

[Jac67]

Hi well that’s me finished treatment just on my tamoxifen which has been not to bad apart from night sweats . Resting for next few weeks. Then get back to work middle August. Very best of luck ladies hope all goes smooth for yous . Love Jackie ❤️Xxx

[Seaside Sar]

Hi DiKat,

That is a pain for you having to go to the hospital every 3 weeks. I'm not having Pertuzumab so maybe that's why mine can be done at home.

Well done on the heart scan 😀

Feels like a long haul with all this treatment but we're getting there. So glad chemo is done as that was definitely the worst part.

We can do this 💕💪

Xxx

[Seaside Sar]

Well done Jackie on finishing this stage of your treatment. What's the next step for you?

Make sure you rest up and be kind to yourself.

Big hugs xxx

[DiKat]

Hi Seaside Sar

Lovely to hear from you.

I’m doing ok with the H&P. I think one of the hardest things is going to the chemo suite every 3 weeks for the infusions, don’t think it’s doing me a lot of good mentally so will be good that you will be getting Herceptin at home. Are you not having Pertuzumab with it? 

I’ve just had results from my second heart scan. My ejection fraction was 62% so actually increased by 3% from first one 😀

Hope you have recovered from your last chemo xx

[Seaside Sar]

Hi DiKat,

Good to hear from you.

How are you feeling?

I am also her2 positive and having 3 weekly Herceptin but mine has now switched to injections. I've got one more at the hospital and after that they will come to my house. I still have 14 to go. Like you, I had 3 FEC and 3 T with Herceptin infusions.  That already seems like a long time ago but it is just 4 weeks since my last chemo.

How have you found the Herceptin & Pertuzumab?

Good luck with the rads. You might find it helpful to practise breath holding so you know what to expect.

Xxx

[Jac67]

Hi Julie . Yeh last one today and mixed emotions. Had some tears leaving the unit . Went for some dinner with hubby and daughter. Definitely feels good it’s over but  you look back at last few months and think wow did that really happen to me . Good luck starting your rads . I’ve been fine all through it . 💕xxx

[Jewels994]

Hi Jackie, have you had your final session. It must be a relief to get it over with but I bet it feels strange as well

Julie xx

[DiKat]

Hi everyone 

Nice to see some familiar names here and some new ones too. Hugs 🤗 to all.

Hope everyone who has started rads continues to do well. I am now 13 wks post last chemo and 7 weeks post surgery and will be starting 20 sessions of radiotherapy on the 18th. I’m having the extra 5 due to being stage 3. I have just turned 50. The hospital is about an hours drive away and my appointments are all 4:30ish. Not great having to wait all day but keep telling myself it’s only 4 weeks!! I’m left side and have been told I need to do breath holding due to position of my heart. Is anyone else Her2 positive and having 3wkly IV Herceptin&Pertuzimab. I will be having my 7th of 18 tomorrow. First 3 were with Taxotere after 3 FEC? Xx

[Oots]

Just got back from my 1st session too. It was no problem at all and compared to the operation and chemotherapy a breeze. Lashings of E45 have been applied.

The only funny thing was the radiographer. A lovely young woman with great knowledge, people skills and authority. I swear she looks like sixteen and I felt like asking if her mum knew hat she was up to. 😀

It sounds we all had a good experience at our first session today; fingers crossed it stays that way. 

Onwards and upwards! 

Oots

[Nellie McNelly]

First one done for me too.  Breath holding was a bit more tricky than when I'd practised it at the planning scan - needed to hold on for longer than I anticipated!  Fine though.  Have now covered myself with moisturiser so feeling a bit slimy.

[Jac67]

Hi glad that’s first one over for you . It’s not too bad after you get first one over . I’ve had 13 . One this afternoon then last one tomorrow. 🎉 xxx

[Seaside Sar]

That's day 1 done for me. No problems at all, other than a call at 7.40am to put my appointment back by an hour as one of the machines was broken. Found the breath holding hard but doable. Hope everyone else got on OK?

Thanks for the heads up, Jackie. How many sessions have you had? Hope you continue to feel well.

[Jac67]

Good luck everyone I’m on June thread but thought I would join yous. I finish tomorrow. 🎉 Goes in really quickly. Skin slightly pink but been feeling great . So far . Drinking lots water and moisturising . Hopefully not get any worse after treatment finishes. I’m off work at moment so resting a lot too which helps 💕.Jackie xxx

[Jewels994]

Good luck to all starting today, hope all goes well xx

[Nellie McNelly]

Hope all goes well today - think it's me, Oots and Seaside Sar starting today.  Slightly dreading it but mostly want to get on with it now.  I am poised and ready for the next few weeks with my Simple soap, Aveeno cream and Aloe Vera gel...

[Seaside Sar]

Evening everyone,

Good luck to all having rads tomorrow.

Will pop in at some point to let you know how mine went.

Xx

[nickyg26]

Hi everyone

I had my first of 20 radiotherapy sessions yesterday. I was diagnosed in December and had 6 lots of chemo (2 of EC and 4 of the dreaded Docetaxol). I had a lumpectomy and ANC in April. I’ve been feeling really good - the further I get away from chemo the better I feel - and I recovered very quickly from surgery. I really didn’t enjoy the feeling of being a cancer patient again yesterday when I went for my radio!! The session itself was fine and I’m glad I’ve got the first one done! I’ve just got to grit my teeth and get through the next 19 sessions!

Hope everyone else is ok xx