February 2020 Chemo Starters

[vasanthy1973]

hi 

nice to see your post after a long time. I used to post but nobody else are active over here. So I stopped posting here . I found out in April 2021 that my BC has metazised to my liver two small spots . They checked for pdl1 which is positive so now inam on 

immunotheraphy tecentriq 840 mg every two weeks. And as per scan in April 2022 I am NEAD. Hope this continues for

another 6 months as I have fixed my son’s marriage in Nov 11. Trying to be positive.

hugs

vasanthy

[Artycart]

Hello,

I don’t know if anyone else in the group are still looking on here but thought I’d post and see. I’m doing ok but struggling with menopause now after everything else. Also now finding I have pain in my other breast. Seems odd but it feels like tenderness I used to get before a period. Due to my age I wouldn’t think there is any chance they could start again after two years either! Just another confusing symptom to keep me guessing! 
Would love to hear how anyone is doing?

[vasanthy1973]

Nice to hear from you Tracy and happy to hear you are doing good .myself still experiencing pain on the operated breast and have back pain. Had a bone scan and it’s clear only .  Yes this is the hardest part than the treatment and not a day is passing without thinking about recurrence. I am trying to immerse myself with my office and house work but still sometimes I feel so depressed . Hope it gets better as time passes away.

hope others also from your group all doing well. 

love 

vasanthy

[Artycart]

Good to see a post here Vasanthy. I miss the forum chat to keep me going. How are you doing?
I won’t have a follow up mammo etc until around September I think. Rads finished in October and am on herceptin as they found I had TNBC plus small pockets of Her2 + as well. Trust me to be so greedy and have both! 🤨 

Would love to hear how everyone is getting on. I’m finding this part the hardest by far. 
love

Tracy

[vasanthy1973]

Hi all

hope all are doing good. Did anyone had their follow up mammo and any other therapies for TNBC. 

long time no post. 

Love

[Artycart]

Hi All,

It’s good to hear from you, Vasanthy. Hope your aches and pains will get better. I’m having some pain too especially in my arm and hand. I had another hospital stay and gall bladder removed recently and since then I think I have developed lymphoedema in the wrist and hand. Otherwise the anxiety of recurrence or secondaries is the worst part. But you’re right - I try to stay positive but it doesn’t always work. 
love

T

[vasanthy1973]

Dear all

hope everyone is ok and doing well after treatment. 

longtime no post in our group. 

myself having some aches at my back and some burning sensation on my right leg and sometime my breast is paining. Trying to be positive all the time. 

love

[vasanthy1973]

Hi all

hope everyone is doing well and fine.

all the best Tracy for your radiation. 

[Artycart]

Hi,

Thanks for all the rads advice everyone. I had my planning appt yesterday and all ready to start in 5th Oct. Also spoke to my Oncologist today. It turns out that part of my tumour was HER2 positive so I will be starting herceptin around the same time as rads for a year. Not sure how to feel about this. If they had known about this earlier I would have had herceptin along with my chemo and maybe it would have been safer for the future? This whole thing is good training to get me out of my fear of change I guess! 
Is everyone doing ok?

Tracy x

[Thomaschix]

Ooh, like Caead I also had a bit of a sore throat and difficulty swallowing but didn’t last too long

[Shi]

Hi Artycart ❤️ For me Rads was easy peasey lemon squeezy compared to chemo, just pace yourself, drink water keep hydrated rest as fatigue can hit at all hours like I said, be vigilant with your skin and it took about 6-8 weeks after for skin to stop feeling like bit of 🥓 (sizzled bacon) I kept cream in handbag as well as fridge and kept slapping it on for those weeks after rads had finished ❤️💕💕✨✨Shi xx

[Artycart]

Thank you all for your helpful advice. I found all the tips and info from here so helpful through chemo and surgery. I can’t say I’m looking forward to it but they’ve said they think it’s better to have it to try and prevent any recurrence. I’m going to have more chemo as well. Probably capecitabine. Hope it doesn’t have such bad side effects as the other types. My hair and eyelashes are just growing back now!
Also had anyone else lost their finger nails? I have a few which are detached from the nail bed and quite painful if I catch them on something!

Love

Tracy

[caead]

Hi, I finished radiotherapy a week ago. I had 3 weeks to all of the breast and then a week of boosts to the tumour area. My surgery was a lumpectomy and they told me that the muscle did protect the chest area so I may not experience some side effects others do.

I did feel a little bit tired in the first couple of weeks but nothing major. 

Coming through to the end of the treatment the area did start to become a little red and as they say a bit like sun burn. I wasn’t uncomfortable but did have a small sore patch so the radiographer took me to see the nurse. In the hospital they were just round the corner from the scanners. They were called tissue viability practioners and they deal with wounds and skin healing. They were great. They assessed my skin and regularly monitored it whilst I was having the boosts. They gave me a gel and dressings to keep the area hydrated. I thought it was overkill but it certainly helped. 
After my last session the nurse asked me how it was and I said I thought it was better however when she looked she said I had radiation dermatitis. I wouldn’t have  known but it meant they could give me a different gel that is specially for that. Flamigel. I have had worse sunburn from holiday so I probably wouldn’t have instigated anything myself but glad that it was picked up by the nurses. 

It would be good to get the radiographers or oncologist to visually show you the area they are scanning then you know what’s related. Towards the end, I had difficulty swallowing. Initially the nurses didn’t think that was related to the radiotherapy but when they checked with oncologist she said that as they were doing some of the lymph in the chest area then that it was likely to be related. This only lasted a week and I just had soup, mashed potato and yogurt. I saw the hospital dietician for advise which was arranged by the radiotherapy department.

i suppose my tip would be to keep talking about every little thing you notice as they have the knowledge and in my experience very willing to help. I am sure that the BCN will also be a good place to call if needed. 

Best wishes to you all. I hope everyone is doing OK. 

[Shi]

Hi artycart, drink plenty of water keep hydrated during rads, you might find you fall asleep at all hours you just have to listen to your body and rest when it wants to. Get as much air to skin as you can kaftan around the house. If you are back at work a loose scarf draped down front covers not wearing a bra. I had my vests tops from H&M and I think others had theirs from M&S, primary etc, go with what you want and no seems under the boob area so no rubbing. Creams used were dr organics aloe Vera and tea tree gel Holland and baratt, moo goo, Aveno, e45 go with what suits you Everyone’s skin is different ❤️Your team will keep eye on your skin ❤️👍 💕💕✨✨Shi xx

[Thomaschix]

Hi Tracy

hope you’re doing well

i found it very tiring and felt a bit sicky after each one (only for the first hour or so). Realised I needed to eat before it! (All my treatments were around lunchtime!!)

I carried on working throughout it and with hindsight I should have taken time off. Think the radio itself and going back and forth to the hospital contributed

as for discomfort my chest was sore (and still is 2 weeks later). It’s bearable but some clothes are particularly scratchy!!

definitely getting better though with plenty of moisturiser!!

hope it all goes ok for you x

[Artycart]

Hello everyone,

How are you all doing? I was wondering if those of you who have been having radiotherapy have any tips or experiences to share? Have you found it tiring or uncomfortable? 
Tracy x

[Daisy D]

Thank you all for your replies

Just not feeling good at moment due to pain and anxiety.

Awaiting review from Royal Marsden 

Hope you are all ok 

Love 

Daisy xxx

[Vornsta]

Big hugs Daisy xx

[Jencat]

Hi Daisy, I'm so sorry to read what an awful time you are going through. I was diagnosed with SBC in February. Although I am very happy with my onc, I wanted to get a 2nd opinion just to double check that there aren't different treatment options available to me. I don't know if it is the same in all cases, but my onc wrote to the specialist for me regarding another opinion. I was a bit worried that she'd be offended me doing this, but she said it was quite usual and actually recommended the specialist to me. I am going to see this specialist privately, but I think you probably have to contact your onc/specialist and ask them to refer you.

Jencat xx

[Artycart]

Hi Daisy, Sending virtual love, strength and hugs to you. So sorry to hear that you are going through all of this xxx I hope that a second opinion will help. 
I’m doing ok... But still haven’t had my pathology results so nervous about that xx

[Shi]

Hi Daisy, please ring the number on here and ask for advise, They will be able to guide you, also I am hoping that others who have got 2nd opinions will jump on and give you advise too. Might also be worth tuning the hospitals directly and speaking to a secretary in oncology, they would be able to advise too about the process I would think 👍sending ❤️💕💕✨✨Shi xx

[Daisy D]

Thank you shi

How do i go about getting a second opinion ?.

Thanks

Daisy xxx

[Shi]

Daisy ❤️ Sending big ❤️👭❤️ Do use the someone like me and the ask the nurse on here, Might be worth getting 2nd opinion on everything at marsden or Christie or kings if you want to? Sending big ❤️💕💕✨✨Shi xx

[Daisy D]

Hi 

How are you all ? I hope you are doing well. Things haven't been to good for me. I had the mastectomy and anc . To be told that 6/,9 nodes contained cancer and one node he couldnt get as was to high up. I then went back to oncology and decided to have rads then capecitabine.  I again mentioned i was really breathless and in chest pain as i had been since oct . Ct scan  has shown tumour in the internal mammary node 4.5cm and 2 further nodes in clavicle and other in axilla. Due to start cape on Tuesday. Feel so angry as i got a copy of my Ct scan from.gp which was done in January which showed this node i was never told about this or followed up . In fact surgeon and histology said internal mammory gland clear . Im so scared to be starting chemo due to all problems of iv chemo but instead of facing it as a preventive ive got to hope it now shrinks tumour as well as nodes .

Just feel devestated .

Love Daisy xxx

[Vornsta]

Hi Vasanthy, they tell you when to breathe and I can hold it ok, the tricky thing for me is not moving shoulders or back when doing deep breaths- I find I have to be v relaxed to do this but it is not an inherently relaxing situation!! It is really worth practising the breathing and maybe doing mindfulness or meditation practice, also getting into a positive frame of mind before treatment. I have started singing loudly in the car on the way over and say positive affirmations to myself over and over.  I have learned to do it q quickly but the key has been managing my worries and mood! The radiographers are good at helping and tell you when you have breathed in enough, some places have lines to watch which show you you have breathed enough- I don’t have that.

good luck with it! 
thanks for your reply Caead 😊

[caead]

That’s true  Vornsta it can be so different for each of us. It is good to share all. I feel for you. Mine is also left side but I don’t need to hold my breath. I guess different machine or location of what they are treating. I found it difficult to hold breath when I had MRI so I can appreciate how hard that must be for you. I am feeling a bit tired each afternoon. My treatment is mostly at 9:15 so I keep going until I need a rest and that’s probably me done for the day. I understand it can take a couple of weeks to feel the full effects so am preparing myself for that. 

[vasanthy1973]

Hi everyone 

Tracy- happy to hear your surgery went well and your are pain free. 

vornsta- Ah is taking deep breath is difficult or it should be taken at a particular time. I have my appointment on Aug 12 . Hope rest of your treatment goes well without much side effect. 

Daisy- has your breathlessness and pain improved ? 

cead- happy to heat radiation is going well 

[Vornsta]

Glad rads are good for you Caead. I have left sided bc so have to do deep in breaths and hold. The 1st session was really hard- one arm went numb and it took ages. I got more tired and stressed as time went on so found it harder and harder to do consistent breaths. Got through it eventually. The next 3 I prepared myself better mentally and was able to relax into it better. Arm still goes numb but it is much quicker so I can manage. I find rads make me really tired 1-2 hours afterwards so have found I should not do any walks or anything straight afterwards but am all right the next morning to so exercise pre rads. We are all different but I thought it wd be helpful to share my exp. I heard from lots of people that rads was really easy but I find it hard. I guess if you don’t have left sided treatment it will be much easier.

have you got yr ct result Daisy and are you feeling less tired?

Vxxx

[caead]

Hi all, glad to hear the op went well Tracy. Another stage of treatment ticked off. Daisy, I hope they can help to relieve your chest pain. 
They said it could take up to 4 weeks after my radiotherapy planning appointment for the sessions to start. Well it took 6 but I am now under way. I have had 2 radiotherapy sessions just 18 more to go. Nothing to it at the moment just like having a scan. It took about 8 minutes after I was lined up. I will let you know if any side effects. My oncologist wanted me to start the hormone therapy at the same time. I could be hit with SE from both🙄.

Best wishes to all and I hope you are finding things to do that make you smile. 

[Daisy D]

How did Radiotherapy go Vornsta? 

Love Daisy xxx

[Daisy D]

So glad to hear your news Tracy and that you are pain free. Have you stayed in ,? 

Still no results from the ct scan but had a phone call to go in for another radiotherapy scan on friday as they feel it would be a better treatment to aim at the chest wall as awell as under my arm.  Bit rough today with the chest pain still 

Love Daisy xx

[Artycart]

Thanks Daisy. It seems to have gone well. I’ve now got two much smaller boobs after a five hour op. Surprisingly pain free already and surgeon hopes that he has got all of the tumour out but we’ll just have to wait and see. 
How are you feeling now? Any improvement or results from your CT scan? Sending you hugs and strength xx

[Daisy D]

Hi Tracy 

Just wanted to say hope operation has gone well today and sending you a virtual hug.

Hope you are all ok 

Love Daisy xxx

[Daisy D]

Hi Vornsta 

Had bloods done they were ok . Yes will give them a ring if havent heard by middle of the week  

Take Care

Daisy xxx

[Vornsta]

Dear Daisy,

thank you for your lovely message! I hope you feel better soon. You cd call the BCNs to get them to chase CT result; is there any anaemia?

Dear Tracy, good luck for Tuesday!

love and good wishes to everyone

xxx

[Daisy D]

How are you getting on Thomaschix, charisma and vasanthy ?

Lots of best wishes

Daisy xx

[Daisy D]

Hi Vornsta 

Just to wish you good luck with radiotherapy on Monday.

Hope you are keeping ok 

Love Daisy xxx

[Daisy D]

Hi Tracy

Thank you for replying and for the vitual hug.

I will be thinking of you on Tuesday and sending you lots of love. Glad your new surgeon is nice and great to hear that you will be having less invasive surgery.  So then hopefully the recovery for you will be much quicker.

Love 

Daisy xxx

[Artycart]

Hi Daisy,

Sorry to hear you are having problems since your surgery. I hope the docs can get this sorted for you quickly. Sorry I can’t help with any similar experiences. Sending you strength and virtual hugs for everything you’re going through xx 🤗 

 
I will have my op on Tuesday. My original surgeon has been quarantined so I have a new one who is really nice. They are going to try to do a breast conserving op on the left and a reduction on the right although I may have to go back for a mastectomy if pathology shows anything left behind. 

Best wishes and hugs to everyone in the group xx T

[Daisy D]

Hi Everyone 

Has anyone felt short of breath and so tired after Mastectomy and Axillary clearance. 5 weeks ago I have had ct scan to check out breathlessness awaiting results. 

Just not sure if im expecting to much 

Love

Daisy xxx

[Vornsta]

They do a scan just to line up where the radiotherapy should go. It is not a scan to see how things are, is that what you mean? Let me know if not clear

[vasanthy1973]

Hi vornsta

did they take scan.

[Vornsta]

Hi everyone,

I start radio on monday. Just wanted to share my radiotherapy planning appt experience in case it helps. You have to be naked from waist up for quite a long time while they measure you, ct you and get you into the right position. The room is not esp warm so if you get cold easily make sure your bottoms are warm,and that you can fold down your waistband so they can see your belly button for the measurements. I also had a warm wrap I put over my legs. I did need to do breath holding as left sided cancer so this may mean it took longer. 
good luck everyone and take care xxx

[vasanthy1973]

Yes daisy 

having an appointment on aug 12th. I also had the shoulder pain before surgery but after surgery it went away. And yes I also feel some hardness near my surgery scar and my mind was like ah has it come back and checked with my dr and she said it will be like that but in course of time it will heal. So check with your dr. 

All the best for radiotheraphy

[Daisy D]

Hi Vasanthy

Sorry to hear about having to stop the oral chemo. Do you have a meeting planned for radiotherapy to start ?

I understand its all such a worry and sending you a vitual hug 

Love Daisy xxx

[vasanthy1973]

Hi all

Hope everyone is doing ok 

I started my oral chemo last Monday but after 2 days I started experiencing rashes on both of my shoulders. Consulted with dr and she gave some antiasthmines and asked me to continue with the tablets but the rashes started spreading and itching also. So onco told me to stop and go for radiation . Feeling weird and worried 

[Daisy D]

Hi Everyone

How are you all getting on ? 

Just an update from me .I went to see oncologist yesterday as im still experiencing the burping and shortness of breath he is sending me for a Ct scan on Thursday. Following mastectomy and ANC im still experiencing some pain also in my right shoulder. 

Sorry if this sounds a bit daft question as anyone else got a nobbly bone on top  above there mastectomy scar. I think it is my rib which would have previously been covered by breast tissue.  

I also have scan for planning for radiotherapy on Thursday afternoon .

That will be for three week mon to friday starting in about 4 weeks 

Then it will be oral carbabetine  for 8 cycles. I dreading that after all the problems of iv i hope it will be less side effects . 

The  Axilla node that they couldnt reach in surgery is 1.5cm as it was stuck to the vein . This does play on my mind as they said they give rads to zap it and then chemo to try to prevent recurrence  but there is no follow up scans to check progress which i find strange.

Keep safe 

Love Daisy xxx

[Daisy D]

Hi Everyone

How are you all getting on ? 

Just an update from me .I went to see oncologist yesterday as im still experiencing the burping and shortness of breath he is sending me for a Ct scan on Thursday. Following mastectomy and ANC im still experiencing some pain also in my right shoulder. 

Sorry if this sounds a bit daft question as anyone else got a nobbly bone on top  above there mastectomy scar. I think it is my rib which would have previously been covered by breast tissue.  

I also have scan for planning for radiotherapy on Thursday afternoon .

That will be for three week mon to friday starting in about 4 weeks 

Then it will be oral carbabetine  for 8 cycles. I dreading that after all the problems of iv i hope it will be less side effects . 

The  Axilla node that they couldnt reach in surgery is 1.5cm as it was stuck to the vein . This does play on my mind as they said they give rads to zap it and then chemo to try to prevent recurrence  but there is no follow up scans to check progress which i find strange.

Keep safe 

Love Daisy xxx

[Shi]

Artycart we all have a vivid imagination after chemo 🤪🤪🤪🤪 glad you are prepping for before and after 👍 hand cream, lip balm and anosol (the drugs can make it feel like getting a backwards pine one out) 😲 Sorry if tmi, but just in case thought you could add to your overnight bag 😁💕💕✨✨Shi xx

[Daisy D]

Hi Tracy

Glad to hear that you have a date for your operation. It will soon all be over and you can get on with recovery. 

The actual healing is quite quick i stayed in overnight too. 

Im just experiencing some pain  in my shoulders today and just feel so tired still. I think i may be expecting to much to soon which is me all over. 

Love 

Daisy xxx