To have the op or try alternative

Hi people

Many thanks for all your kind words. Now on Day 7 including the day of the first infusion cycle. Taste buds are going. Felt generally unwell when I got up and I do not like that. No hair loss, yet. Guts are moving from laxative, thank heavens. THAT has given me more stress than I would have liked. Never been a ‘sicky’ person so may hold off on any further emetics they give me in the future until I do have a reaction. Ondansetron was the culprit for being bunged up when I talked to a nurse from the emergency line. Nearly forgot my 2^nd Filgrastim last night! No bone aches yet. Chemo brain!!! Noticed that after the chemo infusion on Friday that I kept nodding off whilst I waited for the MRI. Maybe one of my reactions to chemo is that I go to sleep! Certainly I tend to nod off after the evening meal whilst watching TV but been doing that for a long time. Now at 1.30pm I am coming round the mountain. Feeling much better than this morning. There is light at the end of the tunnel. Will do some walking, might just kick start the energy back.

Ali owl – blimey, 12 x weekly paclitaxel infusions. That’s a lot and I thought that my schedule later on for having 4 x 2-weekly was bad. It’s the word ‘taxol’ that gets to us and we fear its consequences. Hope you are doing okay on this.

Love to everyone

Glad you have got through the worse days of your first cycle. I found it mentally challenging going back each time knowing I would go from feeling ok to feeling crap.

I would be cautious about not taking anti-sickness tablets until you start vomiting as that is a horrible thing to go through on top of everything else. Maybe reduce the dose next time and see how you feel?

Enjoy next week.

Sorry to hear that you've had to go down the chemo route after all you've done to try and avoid it. Fingers crossed it will do the job that it needs to and that you don't suffer too badly from the dreaded side effects. 

Update. So now I am on Day 12 (including the day of the first chemo injection/s) of EC. Think, overall, I have escaped so much.

Nausea/sickness – not had any. Maybe the anti-emetics did their job.

Digestive tract – this has been a problem. I got ‘bunged up’. However on the Wednesday (Day 6/15) I did manage to pass some on my own. Chuddy rock hard! Still I passed it naturally. That night I took Sennakot (never before in my life) and in the morning started getting rid of the ‘back up’ which was so much easier to pass. Had rung the chemo nurse that Wednesday for advice and she advised a mild laxative. Only took 1 tablet for 2 nights. Said it was Ondansetron they gave me that caused it. Nice! Belching so much though. Understand that this can come from the Filgrastim injections. Last one of these already done.

Taste buds – well these have gone particularly with drinks like my green tea. It tastes like I am drinking liquidised food! Had a Matcha green tea with Mint and it tasted like the MINT SAUCE you put on lamb. Yeuch! Couldn’t finish that one. Coffee seems to be doing okay but still not as I remember. Keep taking the green tea, even now, but not the same. Mouth is really like the back end of a bus!

Mouth ulcers – none of these. Taking extra care here and found I did have a plaque on tongue so used the Corsodyl. All clear now.

Bone/muscle – no aches or pains in these. However, I did have some painful ‘spasms’ around my lower back. They were worse, coming in waves, when my heart pumped blood around my body! That’s only how I can describe it. This happened Sunday evening (Day 8) and overnight to Monday morning (Day 9). It was so debilitating. I was contemplating getting an ambulance! Took paracetamol, 2 big tablets twice and it didn’t really touch it. On Monday morning tried the Ibuprofen, just 2 tablets, and blow me if it didn’t work! Complete resolution. Also don’t know if going to the loo might have had something to do with it. Could have been ‘pressing’ on a nerve down there.

Hair – still got this and not losing any on the pillows in the morning but for how long! Already have numbness on the left side of my body from lacunar infarction. Can’t tell if the numbness in the skin on the skull is because of impending hair loss! Scalp does ‘feel’ different and hair ‘feels’ dry to touch. On Monday tried to arrange to go to a Hair Loss group at the hospital on Wednesday for free scarf and how to deal with hair loss at the hospital.   No answer yet.

Health – generally very good. Woke up Wednesday and Thursday feeling a bit weak when I went downstairs. Simply watched TV until I ‘came round the mountain’ as it were. Was determined to get to the Macmillan coffee morning on the Friday and I certainly felt a lot, lot better on that Friday. It does do you good to get out of the house.

Temperature – seems to be either just under or over 36oC.

Boob – well, I do think that the chemo has ‘softened’ the tumour/s. They’re not as hard. I had been experiencing some grumbles, some to the point of having to adjust my boob as I laid down in bed at night to get comfortable as they were ‘pulling’ on normal breast tissue. Thankfully I now don’t have to adjust my boob to get to sleep! There are still occasional grumbles which make me ‘aware’ but not pain. At one point before chemo I had so much inflammation in the boob I could have very cheerfully gone into hospital and said ‘whip it off’. It hurt that much.

Checked the Chemo discussions and got some pointers. Find that I am eating far too much and must put a block on that. I am choosing foods that will give me the taste but they are also loaded with calories. Having done so well on weight loss I am loathe to put it all back on.

So, is this it! Is this what I can expect of the rest of the EC cycles! Next cycle due on 12 October. We’ll see how we do then now that I am more ‘armed’ with the side effects of EC on my body. I’m retired – ooooh, how old that makes me feel – and gives me the time to concentrate on myself. I have only absolute admiration for anyone who also has to work during chemo. Give yourselves a great big pat on the back.

My love as ever to everyone on this journey,

[edited by admin]

Pleased you are coping, I didn’t have debilitating side effects with my primary chemo , I did stop taking the ondansterone as it affected my gut ! Have you told the oncologist about your supplements ? Mine told me I could continue ,except for bit k 2 , which I felt was useful to get the bit D into the bones ( already have osteoporosis ).......I hope you continue to feel reasonably well , and more importantly the nasty little critter disappears .....best wishes  x

Well done ,  nearly through the first lot ! Xxx

Hi All

Hair Loss group

This was a blast. Arrived early, about 10.45am. One lady already there. No-one else expected. Two ladies doing the session. Form filled in. Received a list of items we will be looking at. Two further ladies roped into the session from waiting room – so 4 ladies and 2 hair people. Arranged by Macmillan with a group called HeadWrappers.. A bit cramped in the Macmillan consultation room. On with one of those hairnet things you see actors and actresses put on first below their wigs, for health and safety reasons. When you use your own scarves you wont need this. Cotton is best for staying in place. The first lady had such negativity about colours and the faffing that is required when we started trying to put headscarves on. It didn’t let up either. Still she had a lot to deal with as she has metastatic cancer throughout her body now and with this chemo round she was starting to lose her hair which was causing her a lot of distress. She wasn’t dealing well with the cold cap a few sessions in either.

So having tied the basic cotton scarves around our heads with other little scarves acting as ‘foils’ we moved on. One lady was called out of the session for her appointment who had been roped in and never came back, the other lady kept popping out as she felt sick. Did come back one or two times but eventually didn’t come back at all. Only we two original ladies were left. Good we had one-to-one attention. We then proceeded to ready made scarf hats. These would act as a base and we could add things over the top making them different each time. I found these much, much better to get on and off and less of a faff and so did the other lady. These looked like some of the things I had seen on websites. There were also a few hair pieces. One was a fringe that just peeps under the scarf. Another was a ‘half’ wig, shoulder length, dark colour. It had straps over the top of the head and it’s combined with a hat. Other lady really liked this as she still had shoulder length grey hair to start with and with a ‘pre-made’ scarf hat over the top it was very effective. You would not have thought there could have been a bald head under there. Tried this myself and went ‘Chuddy hell!!!’. TWICE!  I looked 20 years younger!!!!! - and back to the time when I did have shoulder length hair. There were further examples of showing us how to enhance the hats/caps, etc. Two and half hours we were there and left with the free chosen cotton headscarf we had used during the session, an accessory and a bit literature which I have yet to fully read. You order the items that looked good on you from the websites these hats had been supplied from. That was the purpose of the list of items we would see and tried on to note the ones that worked for us. They are quite cheap.

Had forgotten my mobile. What a time to forget! The session ladies said that when I order the stuff I liked that suited me I should send them a photo so gotta get on the web pages to order BEFORE I lose my hair (if I do). Still keeping positive on that one but also want to be prepared.

Does anyone know if this is a new thing? But I do recommend that if you see these sessions advertised in your hospital, have a go.

Love and virtual hugs to everyone on this journey.

Hi Everyone

So, today is Day 18 of Cycle 1 of EC.  Had a late shower before going to my local cancer support group.  MY HAIR HAS STARTED TO FALL OUT.  I noticed when washing it ever so gently that there were areas which 'hurt' and wondered 'what the heck'.  When my fingers then came away with copious strands of hair I knew what was 'up' though hadn't felt this on my scalp before going into the shower.  I also noted that those areas 'seemed' to have gone pink after the shower although that has now gone away.  I dried my hair very gently with the hair drier whilst using a very wide toothed brush.  More hair came out.  Found a hat I had that I could wear to the group as I could see a recognizable bald spot on the top of the head extending down the back. Went into Tesco after the group to buy some beany hats.

So now I have to look forward to losing more hair.  Oh joy!  NOT.

Love to everyone

Hi  - This is a stepping stone, a stepping stone forward, the sooner all this is done, the sooner you move forward.

You can do this - look how far you have come in these past few months.

Sending Big Hugs and Love xx

I got my head shaved Chloecat because I couldnt cope with my hair falling out. There was so much of it! Then wore bamboo turbans but bald around family and friends.