Member
Posts: 52
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

ps dikat - good luck for tomorrow with the oncologist xxx

Member
Posts: 52
Registered: ‎09-11-2018

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 

Member
Posts: 56
Registered: ‎26-12-2018

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
Posts: 56
Registered: ‎26-12-2018

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
Posts: 52
Registered: ‎09-11-2018

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
Posts: 79
Registered: ‎21-10-2018

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
Posts: 52
Registered: ‎09-11-2018

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
Posts: 52
Registered: ‎09-11-2018

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
Posts: 56
Registered: ‎26-12-2018

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?
Member
Posts: 56
Registered: ‎26-12-2018

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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Member
Posts: 6
Registered: ‎05-01-2019

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

Member
Posts: 56
Registered: ‎26-12-2018

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
Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

I get weighted when I give blood for my blood test so they can inform my oncologist. I forgot to ask if they amended my dosisdosis they told me they rather not.

Member
Posts: 6
Registered: ‎05-01-2019

Re: Anyone starting Chemo in December 2018?

Hi Dikat, just been reading the December thread and just wanted to say that I had exactly the same reaction to my 1st dose of fec down to the neuts of 0.03. However my onc reduced my dose by 20 percent and I am about to have my fourth and final fec on Thursday and have had no further neutropenia and coped much better. There is some tolerance allowed apparently within the dosages as you have to survive the treatment before you can survive the disease and despite the lower dose my lump is rapidly reducing.

 

A piece of advice I would offer to everyone is that if you have lost much weight during a cycle let your onc know as this determines your dosage and none of us wants to be given more than we need!

 

Kitkat x

Member
Posts: 321
Registered: ‎29-06-2018

Re: Chemotherapy and Liver disfunction

@pigeon I didn't have any liver-specific symptoms. In fact, I felt great -- in the 3 days before the blood test, I'd been hiking in the Wye valley with my OH and sister, visiting from the US, doing about 10 to 12 miles each day, with some ascent. My sister joked that she was having trouble keeping up with me, but that was mostly because she was lugging her laptop in her rucksack.

 

I had my chemo before my breast surgery, other than SLNBs, and the IDC and DCIS in my right breast wasn't palpable or visible on US, which is why I got MRIs before, midway through, and after chemo.

Member
Posts: 27
Registered: ‎21-09-2018

Re: Chemotherapy and Liver disfunction

@reddi Wow, 60 to 240 is quite the leap! I think mine was something like 144 previous cycle, and 177 this week. I’m not sure specifically which liver function reading that was, they did say I had one in the normal range and this one that is high.

 

Did you have any symptoms from your liver issues? I was surprised by mine today, as I feel relatively well this week. 🤷‍♀️

 

Its a relief to hear that the T is still effective at a reduced dose. I'm not sure if I’ll be given a post chemo MRI since I had a mastectomy already, and the chemo in my case is to pick up any stray cancer cells lingering anywhere, since I had one positive lymph node of the five removed. While I know that chemo is necessary, I do wish that when I finish treatment, I could get some test done to show that all of this has done me some good!

Shi Community Champion
Community Champion
Posts: 3,233
Registered: ‎11-10-2017

Re: Anyone starting Chemo in December 2018?

Hi diktat, the chemo can give your liver a battering and your team will be keeping close eye on this along your journey. Rapunzel 🤪🤪🤪you have joined the 🤪🤪🤪🤪gang it’s easy to go whhhhhaaayyyyyyy 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻And enjoy the good days, just listen to your body it’ll tell you when to rest. Watch out for burning pee but with no temps ladies, straight onto rapid response line if it happens please no fixing it with cranberry juice, it’ll more than likely be a uti caused by the chemo and will need treating. If any of you start to get tight arms from the chemo, a heat pad on your arm helps and also you can rub a bit of ibuprofen gel on (check with teams about the gel though as this can differ I think from trust to trust) 💕💕💕✨✨✨Shi xx
Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

So far I feel no bad side effects but I am only in day two and last time they kicked in around day four when I ran out of steroids and anti sickness meds. They have given me something stronger and for more days now so hopefully I will be alright. I lost 4 kg since starting the chemo but my appetite is coming back. I drank some alcohol every day between Christmas and New Year, I felt like a toxic vessel anyway. I confessed at the hospital but they told me not to worry about it and that my blood looked fine. I don't know about the cell counts. I feel lucky I have had no nasty infections, or side effects other than my nausea, vomiting  and digestive problems. At least they didn't stop me from getting on with the program.

Member
Posts: 56
Registered: ‎26-12-2018

Re: Anyone starting Chemo in December 2018?

Hi Angelblue and everyone

Regarding my neutropenia sepsis, don't want to frighten people but my oral temp(using the thermometer given by chemo unit) only got as high as 37.2 before I went to A&E. My own ear thermometer was 37.9. I rang the chemo unit and they told me to go to A&E. Its confusing because at the pre chemo talk, they say ring if it gets to 37.5. They issue you with an oral one but they use the in ear ones in hospital. To be honest, I just felt a little shivery but I did have other stuff going on. My throat was incredibly sore...had ulcers and oral thrush. I kind of thought this was just a normal side effect and now know to act on these symptoms immediately as the nystatin wasn't cutting it and needed fluconazole in tablet form. I also had the most intense burning feeling in my chest and through to my upper back. I did have digestive issues prior to bc so already take omeprazole twice daily. They said the burning could be acid, mucositis or thrush travelling down my gullet or a combination of all 3. Tbh I still have the burning sensation now and its 23 days since last chemo. They never did manage to get to the bottom of where my infection originated whilst in hospital but I'm pleased I went when I did and got the iv antibiotics before anything developed further.

Like I say, don't want to be all doom & gloom, just think it's best that people ring their 24hr number to inform them of any issues/side effects they're experiencing and not worry about making a pain of yourself. It's best to err on the side of caution xx

Member
Posts: 321
Registered: ‎29-06-2018

Re: Chemotherapy and Liver disfunction

@pigeon I'm with you: I only gave up the caffeine after the third blood test came back high, and as soon as my liver issues resolved, it was welcomed back. Still, it was super tough. My ALT was higher, at 240 -- and a leap from 60 in my previous cycle (which itself was elevated, but still in the safe zone). They also reduced all of my docetaxel infusions, to about 77% -- but based on my post-chemo MRI, the T was still very effective.