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Anyone starting Chemo in December 2018?

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Re: Anyone starting Chemo in December 2018?

Thanks for your comment Lynne48. It’s useful to hear that others struggled with their first FEC but didn’t necessarily struggle as much with the subsequent ones. I will definitely be on the ball this time if my throat starts to get sore like last time. At least I feel better prepared for things. Thank you x
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Re: Anyone starting Chemo in December 2018?

Hi Angelblue. Just read your last post. I know what you mean about not trusting the medical profession and I used to be a nurse! I think it’s appalling how different areas vary with care. There should be national standards. I’m going wig shopping soon. My hairdresser advised Trendco which is near where my sister lives. He can style it for me as well.
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Re: What care/monitoring are others receiving from oncology??

Hi Angelblue. My next chemo is on the 14th January all being well. Funny how we kind of look forward to a chemo session! I hope you get your chemo sorted. 

 

It’s a nurse led clinic 2 days before the chemo. I see one of the Sisters. They do pulse, bp, temp and weigh you. Ask me questions which they input the answers as it goes over to the Oncology Unit which is a few miles away. They want to know re nausea, pain, sleep pattern, how you are emotionally and  mentally. The chemo support worker changes my PICC line dressing and takes bloods. I was pretty upset last time so they got the Chaplain to come and see me on chemo day. I’m not religious but he’s pretty good. They have counselling skills don’t they. All the staff know that I’m on my own at home. 

 

I have to say when my husband had cancer 8 years ago, it wasn’t as good. So far so good apart from a small hiccup but I’m doing some meditation which keeps me calm. Well most of the time lol.

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Re: Anyone starting Chemo in December 2018?

Hi Rapunzel

 

Well done on being so brave today. Its a big deal. I'm really glad you're feeling happier now that your hairs cut and you've got your wig sorted. I think its a big step psychologically and like you say it gives you some control over this process. If my chemo goes ahead tomorrow I'm thinking of shaving my head on Tuesday or wednesday.

 

Thanks for the info re the level of care/monitoring your receiving. Like I said before it does seem that most people have someone within oncology to check in with on each chemo cycle. I really feel short changed! As well as asking to change oncologist I'm thinking of contacting the PALS (Ithink thats what its called!!) at my hosptial with my concerns. but its just an added stress when you're trying to get through chemo!

 

I've also been referrred to the psycho-oncology service and have my first appointment 18th Jan. I think this will help! I was referred by a breast care nurse after surgery when I was first insisting on the Oncotype DX test - which they all said I didn't need. I was told I was 'being silly' for insisting on it  (but in the end it showed I wasn't low risk as I'd been told but high risk..so not so silly after all!!). I have anxieties which go back to when I had Guillain Barre Syndrome. I was really ill before anyone medical would take it seriously and have a distrust of medical profession which has been exascerbated by the current situation!

 

Let me know how you get on re your chemo change

 

xxx

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Member

Re: Hi everyone

Hi DiKat I found my first dose of FEC back in 2011 horrible with lots of sickness and constant nausea. I was dreading going through the same on the second but it was much better and the 3rd one was better still. But I needed lots of antibiotics throughout my treatment mainly for sore throat and I just had to ring the doctor and they’d do a prescription for me to collect so I didn’t have to sit in a germ filled waiting room. Good luck with your next dose.

Member

Re: Anyone starting Chemo in December 2018?

Hello there,

 

with regard to how I'm looked after:

 

I saw my oncologist before the first chemo. Normally I would only see her again half-way through (i.e. after chemo no 3 of 6) but because I'm still wondering whether another chemo regimen might be more beneficial for me, my oncologist arranged for an earlier appointment (after chemo no. 2).

 

I have bloods taken before the next scheduled chemo and then the chemo ward rings me on the day beforehand to go through the side effects I've experienced. I also had someone ring me after Christmas - just to check in with me and everyone else who had had chemo before Christmas and to see how I/we was/were doing.

 

The latter call may also have been prompted by the fact that I had had to go to hospital right after the chemo and been in touch with the local Cancer hotline about a bit of a persistent cough.

 

In theory, I'm meant to ring the central helpline first if serious, chemo-related problems arise. I would also be able to consult my GP if there are side effects that they can prescribe something for.

 

The breast care nurses are based at my local hospital (I have chemo at another hospital and will have radiotherapy at another hospital yet again - so I'll be getting to know quite a few hospitals). I can always ring them with questions but they're not really involved with the chemo treatments - they can answer general questions, of course, and they are generally a good source of support.

 

Overall, I feel well looked after. I guess more blood tests could be taken but I'm not sure what good it would do. As long as I know where to turn in case of emergencies, etc. I wonder about the aftercare of the surgery scar/tissue a little. Will ask my oncologist about that next time I see them.

 

I also got a referral from my GP to see a psychologist (got an appointment in February). This is related to a long-standing issue with anxiety, but it is also a good time for me to see someone.

 

All the best,

 

xxx

Rapunzel

 

 

 

 

Member

Re: Anyone starting Chemo in December 2018?

Hello everyone -

 

this is just a bit of advice for anyone who is still waiting for their hair to come out and who is anxious about that. My hair did start to come out yesterday, and I got rather upset, so I got in touch with my hairdresser today to get the wig sorted (I had been to see him a few weeks ago just to choose the wig and for an initial consultation). He cut my hair really short (to a few milimeters) and then personalized the wig for me. I was feeling really really low this morning but after the hairdresser's appointment I felt much better. Am very happy with the result - artificial hair, paid for by the NHS, relatively short (which is easier to deal with/look after/transition into and out of). The hairdresser also said that by cutting the hair really short before it sheds more and more, one can prevent the scalp from becoming too tender and itchy. It's also a good idea from a psychological point of view: gives one a sense of control. I may end up wearing the wig only at certain times and opt for scarves or hats at others - but it's great to have a choice.

 

All the best to everyone,

xxx

Rapunzel

(now even more aptly named ;-)

Member

Re: Anyone starting Chemo in December 2018?

Yes, first 3 are FEC x

Member

Re: Anyone starting Chemo in December 2018?

ps dikat - good luck for tomorrow with the oncologist xxx

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat

 

It seems that most people do have someone to check in with prior to each chemo. I'm just worried that on alternate chemos I only have blood tests at the GP and thats it. I feel I would want to discuss how I've felt during the month re side effects. Apparently it was the oncolgists decision that I would only see him on alternate chemos. Its crazy that at my hospital they don't have the facility to see a nurse pre each chemo so they can feed back to the oncologist. i'm going to see what I can do about it. Hopefully transfer to the other oncologist! 

 

I wasn't prescribed gelclair but I have since read about them. If sore throat happens again I;ll definately ask for them!  Re headaches and dizzyness...are you on FEC? I am and from searching on the forum I found that some women do tend to suffer with dizzyness on fec but usually around chemo 3/4. I also had headaches about a week post chemo - went on for around 10 days but they've cleared. Yes I wonder if the dizzyness is linked to anxiety. I know I'm so stressed and anxious by not feeling I'm getting great care and you must feel anxious after what you've been through. Hopefully the next chemo will be better for all of us who've not had a great time with this one! xxx 

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Re: Anyone starting Chemo in December 2018?

Angelblue did you get prescribed Gelclair sachets as well as mouthwash for your throat. I found them helpful.
My regime was Gelclair-1 hour before eating drinking up to 4 times a day
Difflam (mouthwash)-prior to meals 4 times a day and I was also given Nystatin to use following meals 4 times a day as I had thrush too. X
Member

Re: Anyone starting Chemo in December 2018?

Angelblue, so sorry to hear you have still not been well and not been getting the care/support you had hoped for. Like you I think I would be tempted to pay to see the other consultant. Funny you should say about dizziness, even though I’m 26 days post chemo 1 I still keep getting headaches and feeling dizzy. I’m wondering if it’s mainly to do with anxiety in my case although I am trying to using breathing techniques and meditation. In terms of the care I am receiving. I saw the Onc consultant prior to my pre chemo talk with the nurse. My oncology unit is nurse led. I have to attend 2 days prior to chemo session to have bloods and see a nurse to discuss previous side effects. This time I am seeing the Onc consultant (tomorrow). But this is only because of being hospitalised after first dose. The nurses all seem knowledgable and they work across both the day unit administering the chemo and on the ward to keep up skills for both. Our breast unit is separate but in close proximity to oncology. I don’t think I will have any further contact with breast care unit until chemo is finished but do have an assigned Macmillan nurse who I can contact if needed. Hope this helps xx
Member

Re: What care/monitoring are others receiving from oncology??

Hi drummerswidow

 

Thanks for getting back to me. I'm ok thanks. Bit worried in case chemo is postponed again tomorrow due to the stronger antibiotics I'm on now but what will be will be I guess! How are you doing? When is your next chemo due?

 

Can I just ask - when you say you have bloods and assessment prior to every chemo what assessments do they do?? Just check you're doing ok etc? 

 

xxx

Member

Re: What care/monitoring are others receiving from oncology??

Hi Angelblue. I see my Oncologist before I started chemo, after the first chemo and then after the 5th chemo. They are based at another hospital. I go to the chemo unit at the local hospital for bloods and assessment 2 days prior to chemo. The unit is in contact with the Oncology team if there are problems. The breast nurses are based st my local hospital but said if there’s a problem with my chemo to contact the chemo unit. The breast care nurses are very supportive, so I’ve found. It seems there are regional differences. My breast unit has a good reputation. How are you doing? Xx

Member

What care/monitoring are others receiving from oncology??

Hi all

 

I just wanted to check what level of support/care others are receiving?

 

I only have appointments with my oncologist before my 2nd, 4th and 6th chemo, and as I said in my last post the pre 2nd chemo appointment only lasted 5 minutes! I have blood tests done at the Gp which are sent to hospital (my weight isn't taken - is that normal??) Breast care nurses are based at the breast surgery centre which is at a different location. they aren't present in Oncology at all and if you want to speak to one you have to phone and leave a message on an ansaphone and wait 24 hours for a reply. 

 

Can I ask what care/monitoring others are getting...is it similar..especially re appointments/thoroughness of oncologist? It just doesn't seem very much ..or am I just being overly anxious??

 

Thanks xxxx

Member

Re: Anyone starting Chemo in December 2018?

Hi Dikat

 

Thank you. Unfortunately I ended up at the Urgent Care centre again yesterday morning. I finished my antibiotics Friday morning and by the evening I could tell my throat was getting worse again. By sat morning it was redder than ever with with white spots. Urgent Care GP gave me stronger antibiotics but he said to call my oncologist first thing monday morning before chemo to let him know.  Not that I hold out much hope. On my pre-chemo 2 appointment on 28th December I told him about sore throat and he didn't even look at it - just prescribed a mouthwash. I was only in with him for 5 minutes. I also told him that I was dizzy when I stood still and it wasn't improving - he didn't even address that! Then I had my bloods done on Thursday monring to check chemo could go ahead on monday after the one week delay. I didn't hear anything on Friday so I called the hospital at 3pm. The nurse finally called me back and said she'd managed to grab oncologist to check bloods and he said alhthough still low i could go ahead on Monday. Tomorrow I'm going to ask whether my blood results would have been checked and someone got back to me had I not phoned. I have to be honest I have little confidence in my oncolgist and want to change. I did ask about this intially but was told it may delay treatment to get the oncologist I wanted (head of breast cancer research)as I'd have to wait for an appointment. But I know this oncologist has private appointments at the local Nuffield and I'm thinking of asking if I could book and pay for an initial appointment with her at Nuffield so that she could continue my NHS care. Although it would cost £200-ish?? I'd be happy to whack it on a credit card to get peace of mind.

 

Thanks for your tips/info about neutropenia as well. Sounds like you've really been through the mill. I hope your next one is better and you're getting good care. Re honey I've got some mgo525 manuka honey from Holland and barret. It was £32 for a 500g jar (in penny sale it should be £64...but  usually on offer!!). I'd read it was great for sore throats and white blood count but didn't really help me this time...unless I would have been worse without it maybe!?

 

xxx

Member

Re: Anyone starting Chemo in December 2018?

I’ve ordered some of the Life Mel honey to try and boost my immune system this time round. It’s expensive but will try anything to prevent neutropenia again. Any one else tried it or know of anyone that has?
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Re: Anyone starting Chemo in December 2018?

Hope you’re throat is feeling better angelblue and good luck for tomorrow x
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Yes I was given 7 injections rather than 5. The lump star...

Yes I was given 7 injections rather than 5. The lump started to soften and shrink towards the end of the 1st dose but don’t expect that to be the norm. Just as everyone’s cancer is different so is the response xx

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Re: Anyone starting Chemo in December 2018?

Hi Kitkat18. Thanks for your post, it’s really encouraging to hear that you coped better with the reduced dose and had a positive outcome. Were you giving more GCSF injections and how many cycles did you have before you noticed shrinkage of your lump?
Xx