06-01-2019 08:41 PM
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,
06-01-2019 08:31 PM
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,
(now even more aptly named ;-)
06-01-2019 07:30 PM
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
06-01-2019 06:59 PM
06-01-2019 06:36 PM
06-01-2019 06:18 PM
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?
06-01-2019 05:51 PM
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
06-01-2019 04:44 PM
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??
06-01-2019 04:41 PM
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!?
06-01-2019 03:05 PM
05-01-2019 12:54 PM
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
05-01-2019 08:39 AM
05-01-2019 08:31 AM
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.
05-01-2019 12:38 AM
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!
05-01-2019 12:05 AM
@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.
04-01-2019 11:45 PM
@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!
04-01-2019 09:34 PM