June 2020 chemo starters

[Jill1998]

I think they are just trialing it for now . 

[ttyler]

Hi Jill,

 Thanks for letting me know. I remember now seeing something that mentioned what you have said. Sorry chemo brain is not helping me remember things. Think it is good in some ways, however people that require an answer

to a question right away may struggle with the new process. I don’t mind either way.

 Love Tara xxx

[Jill1998]

ttyler - the default notification settings have been changed on the forum to " daily digest " ,unless you go into my settings, notification settings and tick the box to always be alerted to new posts you will just get a summary .They are trying it to see if it works better as some people were being overwhelmed by notifications .

[ttyler]

Hi ladies,

sorry for the late reply. My phone does not seem to alert me now when someone adds a new post it waits until the end of the day and sends me an update of all posts for that day. Is this the same for everyone else?

 Tabs I have corsodyl mouth wash. Not sure I have spelt it correctly. I use it twice a day after brushing. Was not sure if I should do this or if I should wait til I get the ulcers and then use. Don’t really want to get ulcers, especially in my throat which is what my bcn said could happen Horrible side effects.

 My dentist has told me to brush twice a day after eating and not to use the mouth wash straight after brushing. He said to use it at different tunes in the day. He also said should I get an infection he will Perscribe an antibiotic mouth wash. Mind you I might see about getting the difflam one. Thanks Shi

 Hope everyone Is feeling well. I start my first cycle of Docetaxel on Thursday. I have steriods to take 4 lots twice a day. Can I just ask what time on the day of chemo did everyone take their steroids. Do you take 4 in the Morning before you go and then 4 when you got home?

 Enjoy your day everyone!

 Much love 💕 Tara xxx

[Shi]

Please use what teams give you for mouth sores or if you have concerns about using it please discuss with them, it’s better than not using and getting an infection during chemo ❤️Please keep safe. Lots of us were given difflam previously and that helped and didn’t cause staining, please keep safe infections can take hold so quick on chemo. 💕💕✨✨Shi xx

[Tabs]

Hi Tara, 

What was the mouthwash that you were using? I was prescribed some on Friday as on my last cycle, I had a couple of mouth ulcers that took over a week to clear up using just saltwater or bicarb water gargling and bonjela. I'm not due to pick up the mouthwash until tomorrow when I have the 4th and last round of EC. I was looking at the mouthwash contraindications online but didn't see anything about staining. I may try to hold out from using it and just try more frequent preventative saltwater gargling unless I get multiple or big ulcers. I move on to weekly paclitaxel in September but, hopefully, I think that the side effects aren't meant to be too bad with the weekly dose, though I may get unlucky.

I hope that everyone is well and not struggling with treatment too much. 

Tabs

[ttyler]

Sorry meant to say have needed no dental treatment until now!

xx

[ttyler]

Hi Ann,

 Glad your second infusion went well. You are right it is very hot. Normally I wouldn’t mind but have to have the fan blasting all the time due to the night Sweats and hot flushes!

 I have my first Docetaxel on Thursday. The anxieties have started. I get so scared 😦 it’s the thought of the unknown. Only 3 more to go now though.

 My teeth have become stained from the mouth wash I have been using. I’m gutted more than loosing my hair as I have always looked after my teeth and until now have needed now. Dentist has given me some high flouride tooth paste and has said he will try and remove the stains after chemo. What a nightmare!

 Hope everyone else is feeling okay? 
 
 Enjoy the weather if you feel up to it.

 Lots of love 💕 Tara xx

[ann has cancer]

Hi Girls, how are you all doing?  I'v just had my 2nd P, H & T which went ok, no alergic reaction thank goodness.  Hope to hear how you all are, bit hot for sleeping, lets hope for a jolly good thnunder storm soon.

Love aNN

[michellelow123]

Hi Horseylass

yes it is very hot. I’m in the shade 😀

ive been visited by friends and family ( not many) and going out to walk my dog. It helps with mood and brings me some energy 😷. 

glad your mood has improved x

[Tabs]

Yes, I'm feeling that, like it's all really dragging, I should finish chemo in November and then I'm really hoping I'll get my radiotherapy out of the way in December so that 2021 will hopefully just be a tidying up year. I'm really hope that I can get a matching mastectomy on my left side done by some time in March so that I'll be healed in time for a June holiday. I'd love to be swimming in the sea right now, ideally from a beach with a lovely little taverna! 

[Horseylass]

It is hot isn’t it? Phew! I am enjoying sitting in the garden though. 

I have my 3rd (of 6) cycle of EC next Tuesday. Half way through then. Yay. October still seems like a long way off though, doesn’t it? 

I have felt quite down mentally this time. I think it is the fact that I can’t go anywhere or see anyone that makes it so difficult. Talking to people on FaceTime or Zoom is really nice but just not quite the same. Although I do feel better this week than I did last week. 

Just got to keep on keeping on haven’t we! 

[michellelow123]

Hi all

I hope everything is going the best it can! 

ive just finished my EC treatment, and so far feeling ok, a little tired, but ok. However I’m dreading the injections later, in my opinion it’s the worst bit. 

Start Docetaxel in 3 weeks with Herceptin and pertuzumab, not looking forward to this, I’ve heard it’s not as kind as EC. 

michelle 

[ttyler]

Hi ladies,

 Been quiet in here. Hope everyone is feeling okay and enjoying the scorching weather!

 I have felt more sick and tired this time. It seems to be getting progressively worse. Just need to get through my 3 Docetaxel and then will feel happier.

 Take care all

 lots of love 💕 Tara xxx

[Horseylass]

So sorry to hear that some of you are struggling. I don’t think that this heavy weather is helping either. Ie been sleeping really badly since my second dose. 
I had the heartburn problem last cycle but have some tablets now that really have stopped it, it might be worth contacting your team to see if they could send you some out. 

I have to keep reminding myself that this is short term pain for long term gain. We will get there ladies and we will beat this! xxx

[Tabs]

Hi Everyone,

I've been a bit quiet for a while, having had round 3 of EC last Monday. The first few days were fine but have been really tired since Thursday afternoon so have been taking it easy. I think most of my symptoms are from the filigrim (sp?) injections, aches, sore throat, bottom, tirednes,  etc. Am really looking forward to them being done. I was ok with them on the first cycle but I have to psych myself in anticipation now. Look forward to all the chemo and radio being done though it looks like it will creep into 2021. Hope the rest of you have a good week. Tabs

[lam477]

Afternoon everyone

Tara sorry to hear you’re not feeling brilliant.  I’m due my third FEC on Thursday and I’ve still not recovered from the second one. I feel like I’ve never got any energy and appetite isn’t brilliant still.  I too go off of tea after I’ve had my treatment only had my first cuppa today.

ive been suffering from terrible heartburn this time round think I’ve taken out shared in Renee tablets 😂 

We managed to have a lovely break away last week only to a haven site, nothing was really open but it was a change of scenery.  Kids enjoyed it as the beach was deserted.  I felt bad though as I was too tired to go with them and hubby all the time so had to stay and rest in the caravan.  Was proud I managed a 4 mile walk one day but then ended up in bed poorly so think I may of over done things.

im worried that this second round has really taken it out of me so I’m dreading how it’s going to affect me after the third one.  

it’s sunny here still so I’m going to sit out in the garden for a while and see how I feel.

hope you all have a lovely day xx 

[ttyler]

Hi ladies,

Thank you for all of your advice. The bath was lovely and has perked me up!

My husband has just been to Tesco and got some sparkling water and different squashes for me to try so I will give it a good go.

 I think we have to expect the further along we go the tiredness will get worse. Roll on the end of September, can’t wait to be me again! At the moment I feel like the kids expect me to move at 100 miles an hour like they used to and I have had to explain that mum is a little slow at the moment 😝  

 Hope everyone is enjoying their day. It’s raining now here. The slip and slide has had to be abandoned until in the week!

 Love 💕 Tara xxx

[CactusQueen]

Dear everyone 

Reading all these posts always reassures me, thanks everyone. I had my second EC on the 15th and am only just getting over it. I also found Tara, that I couldn’t manage water. I thought I was going crazy. I also went off tea. I’m trying to drink squash and fruit juice, I also like flat Diet Coke. My husband got some sparkling water yesterday so I’ll try that. Not drinking enough has made me feel more sick, and given me headaches and constipation. Hopefully this week will be better. Take care everyone.

love CactusQueen x

[Jo77]

Hi Tara. 

 I had my 3rd Fec Friday , felt more nauseous afterwards too . Been taking the anti sickness pills but slightly better today . I’m too struggling with drinking more clear fluids .... not a good drinker at the best of times . I find squash with sparkling water easier to manage , bottle green elderflower is lovely!
hope you feel better soon x

[Butler10]

Hi tara  sorry to hear you been struggling.  I most admit after my 3rd round of chemo EC  I struggled for longer then the first 2.  On Thursday I start my next round of chemo of Carboplatin and paxitacil  feeling a bit nervous  as the Carboplatin is every 3 weeks but I got have the paxitacil every week. So lots of going up to hospital. But it be worth it in the end.  Have a good day  and hope the soak in bath has made you feel betterxx

[ttyler]

Hi, aNN, and everyone else. A warm welcome to Michelle too.

 I am good thank you. Found my third and final round of FEC a little harder to be honest. Feel really sick, although not been sick and my nose feels like I have been tumble turning whilst swimming and the water has got up there 😝  I am more tired too. My treatment on Thursday was really quick I was in and out in a flash, perhaps that’s why. Half way through now!

 Hope everyone else is feeling okay and not feeling to unwell with the side effects of their treatment.

 I am struggling a little with drinking plain water and any squash added to it you. Even just sipping water makes me feel nauseous. Have a craving for pure orange juice, but not sure if this will flush chemo through effectively. Any suggestions?

 I slept fir most of the day yesterday and are just about to have a bath to see if that livens me up a bit more today.

 Sun has just began to shine so may sit in the garden later and watch my boys on their new slip and slide that my mum has brought them. That should be fun!

Hope you all have a happy Sunday. Keep smiling.

 Lots of love 💕  Tara XX 

[ann has cancer]

Hi Michelle, welcome, the more the merrier, it sounds like we are on similar programmes, I've had 3 x ec and now on HP & T for 4 infusions.  

Tara, how are you doing?

Cheers aNN

[Horseylass]

I’ve been ok. The second round I didn’t have any nausea at all and I’ve been managing to walk at least 3 miles every day which I think has really helped me. I had a lot of heartburn after my first round but I now have tablets for that which have stopped it altogether. 

I did the injections myself as my husband is a wuss too. Not a nice job but bearable although I was glad when they were over! I think that’s one of the worst bits. 

[michellelow123]

Hi Horseylass

Thank you for your welcome.

Ive not been too bad all in all, those injections of filgrastim have been the worse bit for me. Ive had to get a friend to do it for me, im a bit of a wuss when it comes to needles  🙂 

How have you been?

[Horseylass]

Hi Michelle,

Welcome to our group. I have my 3rd EC on 4th August, I’m having 6 EC. 

How have you been coping with it? 

[michellelow123]

Hi i started my treatment 15th June. Ive already had 2 EC and have my 3rd on the 29th July. I then start on THP for a further 3 treatments. 

[Claudia3609]

Hi thank you so much for your comments. It doesn't mention in all the info that you receive that it can be painful. I feel much better now and won't be too surprised when it does fall out xx

[lam477]

Hi Claudia 

I agree with what everyone else is saying that’s how my hair felt before it started falling out, like I’d had my hair up too tight and it needed washing.

xx 

[Nancy.B]

Hi Claudia I am a July starter too on FEC day 4 but I have had awful headaches which are common for me anyway. Mine seem to relate to the antiemetics Emend and onsedantron as they peaked with each dose. I am off them now and just took the last steroid so hopeful that is it. 
I am just drinking as much water as I can as that usually helps. 
See you over in July!

NB

[cecilia]

Hi Claudia
I was the same just before my hair started to fall out itchy painful very annoying

Like the other lady said keep an eye on it if the headaches continue getting touch with your unit nurse
Hope everyone is as well as can be

[Claudia3609]

Hi, thank you so much for your reply, I was convinced it was brain cancer! I didn't realise pre hair loss could feel like this, it feels so strange (like I need to wash it because it feels dirty) hopefully it doesn't last long xx

[Butler10]

 Hi claudia   That sounds like the start of your hair maybe falling out.  As that's what happened to me. It was quite painfull to start   but once it started to fall out it soon stopped.   Sending you hugsx

[Claudia3609]

Hi I finished my injections on day 5 but have had a dull headache off and on since then, it like I've just had my hair pulled and now it's starting to be itchy and tingly in the same area. I'm on now day 10 so can't understand why this is hubby thought it maybe my scalp and maybe my hair starting to come our (I did the cold cap so not sure if it's that or not)

[Butler10]

Hi claudia are you on the 7 day injections as I do get a headache  with them and a annoying   cough. 

[Shi]

Hi Claudia, please keep eye on your temperature and if you don’t feel right even with no temperature do ring your unit again, if you are starting with infection they don’t always cause a temperature. If your wee starts to burn phone your unit it will probably be a uti caused by chemo and will need antibiotics ❤️Keep safe 💕💕✨✨Shi xx

[ann has cancer]

Hi Claudia, I didn't have them with EC if that helps.  Cheers aNN

[Claudia3609]

Hi, I'm one of the July chemo starters, I had my 1st ec on the 13th but I've been getting headaches for the last few days now. My hospital said they sound like stress headaches but I was wondering if anybody here had had them after EC, I'm surprised to have them starting 6 days after the chemo xxx

[ann has cancer]

Hi Tara, good news re you and sorry but I know nothing about children so cannot help.  Wanted to pass on a tip to Immodium users, if you ask for it as "Loperamide" it is much, much cheaper.  Hope to hear everyone's news soon, love aNN

[ttyler]

Hi everyone,

been to the hospital this morning for my surgeon to have a look at my scar that runs from my nipple and underneath.

to the right side of this I have quite e thick blue mark. It turns out it is nothing to worry about just the blue due I had injected to find the tumor and nearest lymph nodes for surgery. Apparently the skin now underneath my nipple has been stretched from the top where the tumor was. My surgeon showed my hubby and I a diagram. Very interesting. I also asked him to have a feel of my left breast whilst I was there to check that too which he did.

 I don’t know if I have said but I had a nine and ct scan just before chemo as I had started to get pain in my lower bottom and thighs. They came back clear but there was some activity in the tissues above my right 3 rd rib. I asked today if I should be worried and if it is cancer. I was told it was not and when the bone scan and ct scan were looked at together in the mdt meeting everyone agreed that it was activity due to recent surgery. Wow I feel so much better!

 My question to you is I have two boys. When I asked today if they can return to school September I was told they will have to wait to go back until 3 weeks after my final chemo. I am really worried about this as my youngest has Aspergers and is struggling with what is happening in the world. He has become quite reserved and gone inside himself. Also if my boys do t go back until mid October as long as my treatment goes to play my eldest will not be there for the first month to make new friends etc. Also, although I am home schooling them I don’t want them to fall behind. Is anyone else in this position? How are you going to deal with it?

 Hope everyone is okay and not feeling too bad.

 Lots of love 💕  Tara xx

[ttyler]

Morning ladies,

I too have the fuzzy feeling above my nose whilst having chemo and a really bad headache on that night. Like a dehydration headache. Even though I drink loads before the infusion and afterwards. I was advised by my nurse to take a paracetamol before chemo and this did help a little for my second round.

 I have a runny nose and itchy eyes like I have grit in. I have been given drops for my eyes but was also told to take a piriton as pollen is high at the moment. Could be chemo mixed with hay fever that is making you ladies feel worse.

 It’s a beautiful sunny day here today. I have got my whip out and my husband is going to finish painting the outside of the house. I’m having it grey with black sills. I told my neighbour I was painting it pink and told him I wanted him to paint his blue to match a pastel theme, he believed me and said he would paint his house if it made me happy 😆 I told him I was only joking. I think it worries him that I have cancer and he wants to make me happy lol 😝  

Hope everyone has a lovely day!

 Tara xxx

[Butler10]

Hi Leanne 

I had my 3rd session of chemo on the 9th  and I also hv felt worse this time  but not sick just queasy  and light headed. I also hv had the funny nose feeling  I only normally get that on day of chemo, but this time every think seems to be taking longer to dissapear.  On the 30th July I start a new chemo cycle of Carboplatin and paxitacil  just hopeing they dont make me sick. X  happy Sunday every one

[lam477]

Evening everyone 

so sorry it’s been ages since I’ve been on, I’ve just tried to have a good catch up on everything.  Happy belated birthday Tara.

everyone sounds so positive.  Glad everyone is ok.

i had my second round on 9th and I’ve felt dreadful since then.  Thankfully they altered my anti sickness meds so I wasn’t sick again but felt nausea since then, not a lot of appetite so picking as and when, hopefully it will help the diet that I started before all of this happened but doubt I will be that lucky.  
I’ve had a very weird sensation since the chemo the bridge of my nose and above feels errm fizzy, not sure how to explain it.  I know I should call the number and ask them but I don’t like to bother them it’s probably just me being a wuss 😂

some one asked about work, I had all intentions of carrying on working through the chemo but since I started chemo on 18th June I’ve only managed about 5 days going in.  Work have been amazing and aren’t expecting me back until next year and they are still paying me as normal.  I work for a small mental health company as the manager so I am planning on going back in January.  Like I said they have been amazing I’ve had cards flowers, chocolates and a cancer care package.  I couldn’t ask for a better place to work.

anyway enough of me going on 

love to you all 

Leanne xx 

[ttyler]

That’s sound advice, thanks Shi.

Ann, I will let you know just before I go for T so that you can share your advice and experiences with me.

 Thanks so much for your support ladies.

 Night, night xxx

[Shi]

Hi Tara, I also used a heat pad at home and ibuprofen gel on arm at home too, but do check everything with your unit 👍 everyones different Tara, I’ve know people work through chemo and rads, others can take longer, you go at your own pace when it comes to work and listen to your body ❤️ And do what makes you happy ❤️💕💕✨✨Shi xx

[ttyler]

Hi ladies,

Thank you so much for your advice it has put my mind at ease.

 Shi, I had a heat pack in my arm last cycle as it felt sore and bruised. I will definitely ask for it again. I find after chemo my stem is tender to touch like when you go to the gym and pull a muscle.

 I one hundred percent want all treatment on offer and will see it through to the end. I am such a positive person and like to support others but can sometimes be a wink when it comes to myself.

 Wanted to ask you ladies. Did anyone go back to work after treatment or is anyone going to go back? I work in a school and are worried I won’t have the strength/ energy to do what I used to. Was thinking about going to uni actually. I appreciate all the support I have been having whilst going through bc and want to give something back. I also want to keep my mind focused in future and like to spend time writing assignments. I know it sounds silly but it is something I can do for me. Another achievement. As if getting through this won’t be an achievement enough 😝  

 tell me if I’m being nosy, just wandered what others have done and what everyone’s thoughts that are going through this now are for the future.

 Lots of love  💓  Tara xx

[ann has cancer]

Hi Tara, I had my T yesterday after a day of p & H, I had not reaction to any of them, I had been like you, concerned, the T they started at a very low rate and increased it after 40 mins and kept increasing it to make sure I didn;t react, I was also given some steroids the day before on a 3 day course, if I had reacted they would stop the infusion and treat me with piriton into the canula.  24 hours later I am feeling as normal as one can on chemo.  The infusion took 3.5 hours and I watched tele the whole time to keep my mind off it.  My next infusion is in 3 weeks and they will give me all the drugs on the same day.  It turned out to be no worse than the first infusion, it's just because it's new, please remind me nearer the time when you are going and I will be with you in spirit cheering you on.  Love aNN

[Shi]

Hi Tara 👭❤️ It’s ok to be 😳 most of us have been when changing from fec to t, it’s the unknown again. It is gentler on the veins but do get them to put heat pad on your arm during infusion, found that helped when veins collapsed, but do speak to your unit to see what they recommend. Lots of people have reaction to t, your team has seen it all before and know what to do, I was about 20 mins into 2nd t infusion When my face suddenly felt red hot and I felt my chest go tight, I just shouted my chest is going tight, they were there in seconds stopping infusion and putting antihistamine bag through me, then the infusion was restarted but more slowly, I won’t lie I wanted to say no ta and leg it, but my determination to throw kitchen sink at it kept me sat in the chair. I did go back to fec for my 6th chemo but others who reacted to t went onto abraxane and were fine with that. Treatments have progressed a lot and there might be more alternatives for you if you have reaction, your team will know what to do if it happens. Remember lots have 💃🏻💃🏻🕺🕺💃🏻💃🏻 Through the and found it easier than fec 👍 we are all different. Hang onto the rollercoaster that’s chemo, you are doing amazing 👍👍 don’t forget to use the number on here to speak to a nurse who can talk in more detail about t with you so you can ask questions you might want to ask ❤️ 💕💕✨✨Shi xx

[ttyler]

Look at the blinking spelling mistakes again. I am having problems again. Hope you can understand what I am trying to say!

 Tara xx

[ttyler]

Hi Shi, thanks for the information.

 I am a little worried about the t to be honest.

i am also worried about my veins collapsing too. I get anxious like this each time before chemo. If by any chance I do get the right chest if hot flushes she having the t what do they do will it be stopped or. Do they lower the dose? I’m so sacred 😝.

 Not been to bad so far apart from the swelling/weight gain and itchy eyes which I have drops for. Can’t wait for this to be over!

 Tara xxx