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Anyone starting Chemo in December 2018?

maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady37
I am not sure about the head shaving but others have done it and feel better for that. I do know that the 'lost' hair gets everywhere and is a hell of a job to get out of carpets and upholstery. Couldn't work out how it got EVERYWHERE so quickly! So that's one big thumbs up when it has finally all fallen out - you will be able to clear it completely and it's not going to be back again except, in time, where it should be - on your head!
You know, once one or two people 'outside' have complimented you on how you look in your wig(s) you will soon feel much happier with it.
I agree that the head-scarves don't ever look as nice as on models' faces, but for indoors they are comfortable, easy and warm. Also, lots of wigs don't take kindly to too much wear, especially cooking smells and the heat from ovens and you can't wash them every day like your own hair.
Hope that helps! Hugs and good wishes.X

angelblue
Member

Re: Anyone starting Chemo in December 2018?

Hi all

 

Ive not been on the forum since my 2nd chemo so not up to date with everyone - hoping eveyones doing ok. Going to read back through all the posts I've missed this evening. I'm doing ok. The only side effect I've had is really bad fatigue. I was asleep for most of last week. I started to pick up on Tuesday this week then over did it a bit which knocked me back again! But feeling a lot better now. Although fatigue is hard I do feel lucky compared to other side effects that can happen.

 

I still have hair! Is this the same for anyone else almost 2 weeks after their 2nd chemo (again I'll read back over whats been going on later as this may have been discussed already). Its thin and has been coming out in strands as opposed to clumps but I could still go out without a wig and just look like i've got crap hair!!. Of course I'm worrying now that it means the chemo isn't working...the things this process makes us worry about! xxx

 

 

maryKamille
Member

Re: Anyone starting Chemo in December 2018?

My 2nd Chemo went well and the (different) nurse easily got a needle in for cannulation. So pleased as I really don't want a PICC line.
I am not going back to Mondays now after all. Nurse said that only in exceptional cirumstances would they cut back the length of your 21 day cycle as otherwise it would be (she didn't use exactly these words) like giving you an overdose. So it's Thursdays from now on. I don't mind really as it's not much to look forward to straight after a weekend, is it?
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hi gocat I had my 2nd Chemo yesterday and noticed today that I have a red face with horrid white patches around and under my eyes - bit clownish really! I only have the 3 drugs in FEC and no fili injections. Must be the steroids then? Let us know if you find out more. I didn't have red face after first cycle - or not that I can remember.
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hi Daffydilly have you got a wig cap underneath the wig and over your thinning hair? It's a bit like a short bit of tights and holds all your hair back and close to head before putting on wig. I have very little left of my own now, but this worked perfectly for me before when I had more of my own. Also your wig should be adjustable at the back and maybe you haven't got it tight enough? Hope that helps.
Daffydilly
Member

Re: Anyone starting Chemo in December 2018?

Help! Just had trial run wearing a wig as despite cold cap hair is now getting very thin. How on earth do you stop it slipping. It seem to ride up my forehead whatever I do - maybe because ther is still some hair under it? 

gocat
Member

Re: Anyone starting Chemo in December 2018?

Yes did get slightly red face after 1st chemo.  Thought it might be the steroids. But could have been the fili injections.  I start mine soon, so will report back.  

gocat
Member

Re: Anyone starting Chemo in December 2018?

`Had chemo yesterday.  No problems.  Just hate the waiting round when you get there.  Had cold cap but my hair is falling out.  Think I will have to brave the shave soon.  

Got home and felt "bit" naseaus about 8.30pm  This is when the severe nausea started after my first chemo.  The nurse advised me to up my "when needed" medication so tried the Prochloperiazine which had to disolve high between upper lip and gum.  I didnt try this one 1st chemo. And yes it worked.   But I had been trying the fasting for 2 days pre chemo. Didnt fast completely but did cut back on what I normally eat. So maybe that helped too.  

Had my 4 steroids today and yes have slight palpatations.  So think it is the steroids.  Have to take 4 a day for 3 days.  Took them at 6am so hopefully wont disrupt sleep tonight too much.  

Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Hello everyone,

 

I have a question for everyone who's been having Filgrastim shots: did you begin to feel very hot after the shot? Especially (but no only) in the face? I started last night, and I was wondering whether I was getting my first ever hot flush, or whether it's a side effect of the shot?

 

Thanks!

 

xxx

Rapunzel

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Hi fluffy, thanks for update re picc. Let me know how well toy sleep with it in. I'm dreading my procedure next week so this has made me feel a lot better x
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

DiKat, this is so the place to vent!! Let it out girl! I hays my balls hear too but have found it can balance things on it really well for everyone's amusement. Tried in my wig today as u want to wear it for the first time to a dinner on Saturday but I really don't think I can stick it for long.
Not sure if heart flutters are stress or side effect. They say not side effect so I've guess we have to believe them but we are clearly all the same. Maybe it's out hearts way of telling us its still beating and to stay strong. Xx
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

MaryC, I feel way less snotty today although my partner is bravely facing man flu. I did jobs in the house which made me feel good but tired.
Hope the 2nd chemo went OK. I had a lower dose second time so that side effects were not as bad. Hopefully same for you. I can't imagine not having it on a Monday. Even after just 2cycles I feel that I am in a routine of sorts. Look after yourself x
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Rapunzel2018. I hope that this cycle of chemo is not so bad for you. I had my third on Monday. Only take steroids for 3 days in the morning post chemo. So I’m expecting to be very tired over the weekend. Afternoon naps are great aren’t they. Your body needs to rest, you’ve bern through a lot. xxx
Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Hello everyone,

 

I see there have been some ups and downs for some of us. I hope that things might move onto more plain sailing from now on for everyone! It's hard to keep up one's (inner and outer) strength. It's also hard to communicate how all this feels from the inside, often I don't even know myself how to put it into the right words - or make sense of it. Maybe that'll come later. For now it's a bit of a marathon, I guess.

 

Had my second round of chemo yesteday. Bloods had recovered nicely in the few additional days I'd been given due to low blood count last week. Now have to inject Filgrastim for 10 days in order to avoid ending up in the same situation. Well, we'll see how that goes. Admit I'm a little scared of the stuff, but if it helps ... Vein used yesterday for canulla a little swollen and unhappy today - but it was a bit of a long session (due to some administrative delay) yesterday so I'm not surprised. Cooling seems to help - if anyone else has any good advice ...

 

Also got more anti-emetic and more steroids to avoid the prolonged nausea I had in the first cycle. Well, we'll see how it goes. Feels all a bit much to be taking all these pills (am still finishing antibiotics from last week). My body really has to cope with more than ever before. Quite astonished it's doing as well as it is, tbh.

 

I wish you all lots of strength, and energy, and good rest whenever it is needed. An afternoon nap is a wonderful thing if one can't sleep more than 2 or 3 hours a night, isn't it?

 

xxx

Rapunzel

 

Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Hi all, hope everyone is as well as can be expected.

Had my Picc line procedure today, was surprisingly quick and painless. Thank goodness its sorted in time for my next round of chemo on Monday, my veins have taken a bashing after the cannulas on Saturday x
Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Hi all, hope everyone is as well as can be expected.

Had my Picc line procedure today, was surprisingly quick and painless. Thank goodness its sorted in time for my next round of chemo on Monday, my veins have taken a bashing after the cannulas on Saturday x
DiKat
Member

Re: Anyone starting Chemo in December 2018?

Good luck today maryKamille and I hope this cycle is kinder to you. Another one down. YES! 

I wear a fitbit and it logs my heart rate on my phone. All these episodes of tachy that I'm having are definitely pushing up my average heart rate. Not sure if these gadgets cause more anxiety but it is a good tool to show what has been happening. I'm hoping this anxiousness passes soon...its exhausting me. Gonna try and have a walk this aft. Just been putting some makeup on to try and lift me. I feel so ugly today, hate my bald head, hate the way I look in scarves and my wig makes me hot! Sorry to be a miserable moaning mini...this is strange for me, I normally keep things in. I'm the one people come to and have a vent. Thank goodness for this place, my family and friends are wonderful but they just don't get it. Love to all xx

maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne

 

I also have palpitations and mainly when relaxed in bed. Do you think it's anxiety? OK so we think we are 'relaxed' but maybe our thoughts are of the day's events and/or of what's coming next ....?

I do feel for you, as others also, with a list of problems occurring. Chemo does that - makes us vulnerable - but you have certainly had more than your share. Hope you continue to feel OK on this Chemo cycle. I start my 2nd one this pm. It was postponed for tooth extraction. Saw Oncologist yesterday and he fixed up for the Chemo today after examining my 'looks healthy' cavity!

I think he's trying to make up some lost time as my day is Monday really and that would be 21st January, not today. Also, he intends to get me back on Monday next time - so I think I will be a few days short of the 3 weeks for this cycle before they hit me with the next one.

I had problems with the first Chemo cycle  and am trying not to think ahead as to what might happen with this one. Better not to think about it! XX

DiKat
Member

Re: Anyone starting Chemo in December 2018?

Jayne1966 sorry to hear you're snotty. Hope the antibiotics get on top of things pretty quickly. Hugs all round xx

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Gokat DiKat, I have palpitations too. Like a flutter in the chest, bit unnerving. Only notice it when relaxed in bed.
Good luck tomorrow Gokat. I had a picc line scheduled for just after 2nd chemo too. Asked them to move appt to nearer 3Rd one to have longer without it. So getting mine next Wednesday now.
Woke this morning bunged up. Bright green snot. Called help line to see if ok as had normal temp and was sent straight to docs and now in antibiotics. Each little thing makes me realise how serious this is. I keep trying to play it down in my head but it's not working. On the plus side in half way through week 2 in the cycle and feel like my normal self. Hope everyone eldest is feeling OK. Hugs xxx
gocat
Member

Re: Anyone starting Chemo in December 2018?

Thanks you.  No, no history of palpatations before.  Will mention it tomorrow .  

Hope you are ok now .  xx

DiKat
Member

Re: Anyone starting Chemo in December 2018?

Good luck for tomorrow gocat. Don't know if you've seen my earlier post about going to a&E but I had lots of palps this time! Onc think its stress but I'm sure its related to the cocktail of drugs as well. I would check with your unit re all the different side effects for the different drugs. Do you have any history of palps? xx

gocat
Member

Re: Anyone starting Chemo in December 2018?

Got 2nd chemo tomorrow.  Hope I dont get as severely nauseous as the 1st one.  Other than that I got palpatations. Not sure what caused it.  Im was on Dex 4 tabs a day x 3 days. Was told to take the 4 tabs in the morning.  Still couldnt sleep at night.  Also was on the fili injections x 5 days starting 2 days after chemo .  Wonder if it was either one of those that caused the palpatations.  Will mention it tomorrow anyhow.  

Having picc line put in on Monday.  

pastasmissus
Member

Re: Anyone starting Chemo in December 2018?

On filgastrim day 3 for 7 days. Last cycle got very sore hips also stiff and sore sacrum day 8/9. Sorted with cocodamol and ibuprofen and stopped when I finished the injections. Am prepared this cycle!

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Just caught up on todays messages. DiKat stay strong hun. That all sounds horrible. I am on the same injections as you. Every day for 7days after chemo. They make my joints ache. I have a constant headache and no idea why.
Sounds like we are all a bit down at the moment and still so early in our treatment. Is struggle to understand why things are different for us all.
I went to avoid local beat cancer support group meeting tonight and meet people going through it and who have been through it. It was good to talk specifically to ladies who have only completed chemo in the last couple of months.
My nurse has said to stay away from anywhere like a gym as it's way to risky on the infection front. All our non cancer problems can be dealt with when we feel better. For now let's just get through tomorrow. sleep well xx
Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Oh gosh I really haven't got the energy to go to a gym! Not that I've ever been to one I have a exercise bike at home and I keep looking at it thinking I will try and go on it but it's the last thing I feel like doing. Think that was abit insensitive of your oncologist I think we have enough to deal with then making you worry about your weight. And yes tomorrow is a new day xx
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Thank you Catlady. It probably is the fluids but I’m a big girl already and my Oncologist was less than complimentary about my weight and told me to go to the gym 🙄🙄. Now I’m a bit paranoid about it. Never mind tomorrow will be another day and a better one.
Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Dikat im glad to hear your feeling calmer today ☺️   im on granocyte (lenograstim) injections for 5 days on EC so can't say on the side effects of yours but I've been fine on mine I was told to take at night so any effects or joint pain are while you sleep.

And drummers widow I know it's another thing that makes us feel crap when we stand on the scales but I've always been told it's better to put on weight then lose it while on treatment and like Dikat said alot of it probably is all the fluids I hope your feeling a little brighter tonight xx

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat. I have them on day 5 for 5 days. I suffer from joint pain and pain in my sternum. Also some headaches but is that the chemo xx
Jencat
Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat, I had the injections when I had chemo and I felt worse when I had them-my onc said it was chemo SE's that made me feel unwell, but I think it was partly the injections. I don't know how many you're having, but I had 5 with each FEC and then I had 7 with my first T, but managed to negotiate with my onc to reduce my injections to 5 again for my remaining two T's and as far as I'm aware, the reduction didn't make any difference xx

DiKat
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow I really feel for you having AF. My atrial and ventricular ectopic and tachycardia have been described as benign in the past but like you say, it sure is scary when your heart doesn't behave the way it should. A lot of your weight is probably fluid. It's just something else to take on when you're already feeling down.

 

Think I've asked this before. Does everyone else have Filgrastim and if so has anyone suffered any side effects? X

DiKat
Member

Re: Anyone starting Chemo in December 2018?

I'm feeling calmer now Catlady37 thank you very much. My hubby is stressed that I've stopped the Filgrastim injections unnecessarily as he is more concerned that I end up neutropenic again. He is convinced that I'm stressed rather than reacting to the drug. It's just so difficult to know with so much going on. At least those of us on a similar path can hold each other up along the way and dealing with each treatment in turn is a healthy way to approach it x

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Trixielady, Jayne 1966, DiKat and Katlady. I think we’re all struggling a bit st the moment. Sorry you’ve been in hospital. I have atrial fibrillation and know how frightening it is when your heart is thundering away. 

 

I felt miserable this morning when I weighed myself. Put on some more weight but it could be the fluids they pumped into me yesterday! But this is nothing compared to what you are all going through. 

 

Sending hugs to all xxx

Jencat
Member

Re: Anyone starting Chemo in December 2018?

Jayne, so sorry to hear your news, thinking of you x

Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne1966, So sorry it's not easy to make the decision, it has to be what's right for you, I took my age and hobbies and life plans in mind to make my decision and glad I did, I found my emotions were worse before I started to get inflated because for me it was hard to look down and not see something there and it also made me even more unhappy in my own skin, unfortunately we have decision to make that we never thought we'd have to just give yourself time xxbig hugs always. It would be lovely to just have a cancer free thought tho wouldn't it xx
Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat 

Sorry to hear you was at A&E last night I know it's scary being there. How are you feeling now? I had a really bad migraine on my first chemo when I spoke to my oncologist she said it was not related to any of the medication and I think it was stressed related so your oncologist is probably right stress can really effect us more then we realise but it goes hand in hand with breast cancer unfortunately.

I feel the same as you with everything that's to come as I'm only at the start of my journey I know I will have A double mastectomy but the only way I can deal with it is take each treatment at a time once the first chemo is over look to the next and take it day by day and remember we are a day closer to being healthy again ☺️

Sending you virtual hugs you can do this 💪

Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat, sorry to hear about your hospital stay, its so difficult to stay strong for everyone else sometimes I find it helps but at times all you want to do is scream and shout, it's so difficult when you've got kids to worry about I hope they can talk to other family & friends. I'm really pleased with my mastectomy got a few more inflations to go but I don't think I could have coped not having it done hated looking down past it and hated my shape. My concerns is I'm still waiting to start chemo but need the heart scan first xx big hugs & positive thoughts xx
DiKat
Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne1966, catlady37 and pastamissus ,Drummerswidow and anyone else around. Jayne I'm sorry to hear your news re your other breast being affected. I'm pleased you got to talk to a good nurse and think you are doing great despite everything being thrown at you. As is everyone else in our club. I think you're all such an amazing bunch. It's so hard when not only do we have our own thoughts and fears to contend with but those of our children and loved ones as well. I'm feeling shocking today. Spent last night in a&E. Heart started going crazy,  pains down my arms, numb hands etc. Was awful!!!! Heart and bloods checked out ok, eventually. Nurse spoke to Oncologist today and he said to stop Filgrastim for a couple of days even though I was ok with it last time. Onc actually things it's all stress and wants me to see someone. I feel so out of control and so scared. I know we're all waning at times so good to know others have come through the other side. I'm also thinking of double mastectomy after chemo and can't even get my head round reconstruction at this stage. I know I need to get a grip as I'm currently living live in fear xx

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Patasmissus, I definitely think I want 2 mastectomies. I just want rid tbh. My best friend from school has also been through it and is living flat. I can't bear the thought of them finding more in the future so they have to go. Not sure about reconstruction at the moment but that seems like a small decision in comparison. I'm sure nearer the time I will work it all out x
pastasmissus
Member

Re: Anyone starting Chemo in December 2018?

Jayne - I got it in both breasts too, have had 2 mastectomies and am living flat. In some ways it's actually easier with no boobs at all than just one. All the best for treatment

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

What horrible news for you. It must be a nightmare to get your head around it all. Sending hugs. I really don’t know what else to say. Bless you everyone is here for you xx
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady. I asked the nurse. She only gave me the last ones so next time i’m going to get all of them. 

Catlady37
Member

Re: Anyone starting Chemo in December 2018?

We are all here for you xx
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Catlady, thank you xx
Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Jayne I'm so sorry to hear that I bet that came as a real blow today ☹️  there really is no pattern to breast cancer its all a mind field! 

But looking at the positives it's stage 1 so they have found it nice and early and can tweak your chemo treatment to blast that too all at the same time keep positive you sound a strong lady so I know you can do this. I will be having a double mastectomy but I will cross that bridge when I come to that stage.

Sounds like you have a really good nurse and that's great she's gone through treatment plans and info on complementary therapies.

I feel for you with your kids and commend you that they are your main concern I can't give advice in that department as I have none but you sound like your doing a super job as for screaming and crying sometimes you just need to let it out and lean on friends and family tomorrow is a new day and you will see through the woods. Sending you a virtual hug xxx

 

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Drumerswidow, hope you feel ok following #3. One more down x
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Hi Catlady, Nurse visit was mixed. I had biopsy results from a second test done following MRi scan. I have cancer in keft breast as well. So HER2+ and oestrogen+ on right Grade 2, and HER2- and oestrogen+ on left Grade 1. Feel so gutted to have even more of it even if it is a lower grade. Feel like i just want 2 full mastectomies and to get rid asap.

On the positive side I have been given some info on complementary therapies and things to help the family too, and the nurse spent almost an hour talking through the different treatments and prognosis and the whys and wherefores of it all which has helped.

The kids are still my main area of concern and 2 out of 3 are not dealing with it well, although they both suffer from anxiety anyway which we were already struggling to deal with. Can't see the wood for the trees at the moment and not sure how I feel. Half of me wants to scream and cry whilst the other half wants to try so hard to stay positive and put on a brave face. 

Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow I hope you're feeling OK after your third round and you enjoyed your nap. I think I will be napping very soon. That's nice to hear you have buddied up with someone else it makes it seem easier abit crap you had such a delay though.
Who do you ask for a copy of the blood results would that be the nurse or oncologist?

And Dikat how are you feeling today I hope you're feeling better I know you have had a rough ride so far but I'm hoping it's getting better for you xx
DiKat
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow hope all goes well after your 3rd EC. Another one down. I do the same with bloods. I suppose it gives me the feeling of slight control in an otherwise uncontrollable situation!

Jayne1966 Hope all went well at today's appointment and hope you got some answers to your questions. 

Take care everyone x

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi All. Let’s hope we all have a better week this week! Wishing everyone feels better emotionally and mentally. It’s tough isn’t it? 

 

I’ve had my 3rd EC today. Not been in long due to a delay. The chemo the pharmacy sent down expired yesterday! 🙄🙄🙄. So I had to wait for some more to come down from pharmacy. Red faces all round. Nurses weren’t happy because they were really busy.

 

I’ve buddied up with another breast cancer lady. So it’s nice to compare side effects lol. I’ve started asking for a copy of my blood results so I can keep tabs on what’s happening. Feeling tired this afternoon so I’m joining the dogs for a quick 💤💤💤💤💤. Let’s hope that we don’t get to many problems following chemo today