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May 2017 chemo starters

katie11
Member

Re: May 2017 chemo starters

Good luck rosie, here's to counting down the last 8 xx
Rosie65
Member

Re: May 2017 chemo starters

Glad to hear it went well Katie. All ready for my first one tomorrow - they've booked me in for 8am so early start. 

katie11
Member

Re: May 2017 chemo starters

Oh Mai7 hope your ok. Let us know how your getting on xx

First Pacitaxol went well. As it's weekly no anti sickness meds or daily injections to bring home so bit nervous but glad it went well. Took slightly longer than EC as it is now on a drip so took about an hour for Paciltaxol, and probably hour for pre meds and extra saline after. Lets see what tonight brings xx
Trisha69
Member

Re: May 2017 chemo starters

Thinking of you Mai x
treehouse
Member

Re: May 2017 chemo starters

Oh Mai!
Sorry to hear you are in hospital on antibiotics. That was fast! Did you have any symptoms other than temp?
Hope you get home soon. Thinking of you. X hug
Rosie65
Member

Re: May 2017 chemo starters

Oh no Mai7 that escalated quickly, good job you were on the ball with the temperature 

and got to hospital. I' m really bad at remembering to take mine. Fingers crossed you can go home soon xx

WolfEE
Member

Re: May 2017 chemo starters

Mai7, omg I'm so sorry you are in hospital how awful for you. Let's hope the antibiotics get you sorted quickly.
When you feel up2 it log on on and let us know you are doesn't need 2 be long messages no pressure just that your ok. we will all be thinking of you xxxxx
Trisha69
Member

Re: May 2017 chemo starters

Thanks. Will pop in on Friday after no 3 FEC
Mai7
Community Champion

Re: May 2017 chemo starters

Well, since my last post my temperature soared to 37.7 last night so I was admitted to hospital. By the time I arrived at the hospital they measured my temperature at 39.1! Had loads of tests all fine and being pumped with antibiotics. Waiting for another blood test to see if I need more antibiotics or can go home.

Katie, hope the taxol went well
Munchkin
Member

Re: May 2017 chemo starters

Hi trish, Aldi sells it for £7.99!😊xx

treehouse
Member

Re: May 2017 chemo starters

It must be strange having chemo after surgery. It is what I originally wanted but surgeon said otherwise. There are pros and cons for both.
It must be nice knowing that the tumour has gone and you are just mopping up any strays and reducing your risk. I guess this is like insurance for you.
Hang in there 😊
AliOG
Member

Re: May 2017 chemo starters

Hi Treehouse,

 

I'm on six sessions of EC. That's it, pretty straightforward really. I had my WLE and SNB in April. It wasn't conclusive that I needed chemo but I was given the recommendation that it would help prevent recurrence so here I am. X

MJK
Member

Re: May 2017 chemo starters

Ouch Mai, that sounds painful but smoothie sounds good. Wandestrong, glad you've got MIL helping you. My mum is staying whic helps keep things stable and calm.
Just been to the oncologist, white blood count has gone up from 3.5 last time to 5.4! So good to go for last FEC tomorrow. It looks like the AHCC is working. 😊
treehouse
Member

Re: May 2017 chemo starters

Good to hear from you Aliog. It does get better I promise. What drugs are you on?
AliOG
Member

Re: May 2017 chemo starters

Morning everyone,

 

Thanks for the responses. I got some manuka 24+ online for about £16. Pricey but worth it. I've been having that but the doctor also told me Junior Bonjela works well and has little alcohol in it so I've tried that too and it seems to have calmed the tingling down. 

 

Managed a a full day out of bed yesterday and a 20 minute walk. Feel like I'm pulling out of round 1 misery, thank god! 

 

Sipping tea now and about to delve into a detective novel. 

 

Hugs to to you all x

WolfEE
Member

Re: May 2017 chemo starters

Seafront that sounds gorgeous I'd love 2 be near the sea - enjoy xx
WolfEE
Member

Re: May 2017 chemo starters

Good luck Katie xxx
treehouse
Member

Re: May 2017 chemo starters

Thinking of you today Katie. Hope it goes well.

Glad you are feeling better Trish, lidl had Manuka a couple of weeks ago, not sure if they do now. It was15* I think.

I had dinner with my oldest friend last night, first time I have seen her since treatment started. It was nice to catch up. Slept like a log last night 😊
katie11
Member

Re: May 2017 chemo starters

Thanks ladies , water drank, nails painted dark! Paciltaxol here I come! Eeekkk so nervous xx

Glad your feeling better now Trisha, enjoy your day
Trisha69
Member

Re: May 2017 chemo starters

Good luck Katie 🙂

 

Anywhere sell Manuka cheap?

 

Off for coffee with a new and an old friend, then a stroll on the seafront.  Beautiful morning 🙂 x

Rosie65
Member

Re: May 2017 chemo starters

Katie - Good luck today, will be thinking of you xx

 

Anniej - I must remember to use the Manuka honey this time on my ulcers, hopefully it will help

Anniej
Community Champion

Re: May 2017 chemo starters

Ali, the only things I have used through treatment is Manuka honey, and Aloe Vera toothpaste, plus the mouthwash from hospital. I started with a couple of ulcers yesterday, but have upped the Manuka to twice daily. Thoroughly coating the area. My hubby has fallen off the settee laughing at what he calls my gurning face - but hey, it's helped . I think I'm very lucky, reading other posts. Gentle hugs. X

Wandestrong
Member

Re: May 2017 chemo starters

Thanks for the stars! I'm blessed with a supportive family, especially my mum, who completed her own bc treatment journey 3 years ago. My husband has had to go to back to work, so my retired mother in law is staying with us till I finish Chemo, so I'm able to get some rest during the day. I'm just praying my levels are good enough for Chemo next Week. As hard as it is, my kids keep me motivated to fight on. My 4year old is starting school in September so I'm doing my best to keep him focussed on that and not on my treatment. Hope everyone is doing well x
Mai7
Community Champion

Re: May 2017 chemo starters

Katie, wishing you all the best for your new treatment tomorrow. I know I'll feel the same when I start Docetaxol but just think, we got through chemo so far and can cope with whatever it brings. 💪🏼

 

Treehouse, my hair seems to have stopped falling out too. I have about 45% of my hair left (more bald on top) but doesn't seem to be falling out any more (Hope I didn't speak too soon! Gulp!)

 

Hope everyone else is doing well. 

Rosie65
Member

Re: May 2017 chemo starters

AliOG - I also clean my teeth after I eat with Biotene toothpaste, floss and use Gengigel mouthwash and gel alternately to keep the mouth as clean as possible and only when it escalates resort to Difflam and Gelclair. It did mean my symptoms were less severe this time.

 

Went into work today and survived the train journey! I'm shattered now though. I really enjoyed seeing everyone and actually felt completely normal for the first time in months. I realised how isolating all this is and seeing my house again when I got back, it felt like returning to a prison. I've spent so many hours in it!

 

The genetic article is is interesting MJK, would be great if the testing became standard for cancer eventually. The detection of the BRCA 1 gene in my case has led to my treatment being more targeted. Even within the gene there are different variants and I have details of my particular sequence. My oncologist went to great lengths to explain how the treatment works - something to do with chairs with four legs and my chair only having three legs, and restoring the fourth leg but I'm afraid my poor little chemo brain was unable to take it all in. I am also going to take part in a study by Cambridge Uni who have some funding from Cancer Research to look into the BRCA genes. Hopefully it will help the future generations of my family

treehouse
Member

Re: May 2017 chemo starters

Katie while researching my drugs on google it often states the cost of treatment. I added up all 4 of my drugs.. .it is very humbling to think how much it costs to keep me alive. If it were not for the NHS I would need to sell my house.!!!!!!
That doesn't include all my goodie bags or surgery or radiation.
katie11
Member

Re: May 2017 chemo starters

I've been thinking about the cost of that prescription since it was mentioned the other day and cant believe how much it costs. Makes me wonder how much our total costs for treatment is? So glad we have our amazing NHS that provide it all for us x
katie11
Member

Re: May 2017 chemo starters

Hi AliOG, how's your chemo journey so far? I've felt like I'm starting with sore mouth and throat a couple of times and have gargled with salt water which helps. I also use a tea tree oil mouthwash twice a day from Holland and Barrett . So far I haven't suffered like some. X
Trisha69
Member

Re: May 2017 chemo starters

Hi I have had 3 weeks of mouth ulcers and difficulty swallowing.  All of the next to follow I got on in...

Gelease (Sachets mixed with water 4 x a day as a mouth rince)
Diiflam  (MOuth wash as required, gargle and spit0

Nystan  ( 4 x a day, swill around mouth and swallow)

Xylocaine (A lignocaine based spray theat numbs the sore area)

 

Ice cream

Lemon Sorbet

 

When I see Oncologist on Thursday am going to ask about a prescription called Miss Tracey.  One of the ladies on here told me about it.  Avaibale only on private prescription.  (Chemist would make it up for £150!!)

Good luck, as I have been thru hell this nonth and its still sore xx

AliOG
Member

Re: May 2017 chemo starters

Hello ladies,

 

I know you've discussed this before but for ease, what do you recommend for mouth ulcers? My tongue has started tingling badly today and it's making me not want to eat/drink. Want to head it off at the pass if I can. 

 

Thank you!

treehouse
Member

Re: May 2017 chemo starters

All good points misyangel. I forget I can practice at home, always rely on teacher and lessons. There are good youtube vids with yoga for people with cancer. I think I will try to make it part of my morning.

Round 2 was better for me. Not sure if it was saline but I will ask the lovely nurses. Don't want to drag my treatment out too much longer.

I also got the hay fever tablets but forgot to take them. Will try this time.

My hair seems to have stopped falling out.
I just have thin one inch fluff. I look like a baby bird, I cheep cheep at my husband when he kisses my head.
misyangel
Member

Re: May 2017 chemo starters

Treehouse I do yoga eveyday at home by following a dvd on weeks two and three and find this helps me a lot.


For all of you suffering with side effects ask them to put more saline in, on my third fec I had the most saline and I cant believe the difference in how i have felt.

 

Mai7 I have been reading about Q10 but scared to take any supplements whilst having chemo but defo going to have that after.

 

Wandestrong you are amazing going through this with two litte children.

 

Trisha69 I used the Clairtyn for the bone pain and this seemed to stop it, I had one tablet in a morning prior to injection and took everyday until injections finished.

treehouse
Member

Re: May 2017 chemo starters

Hi. Back from an hour and a half of twisting and stretching. All yoga poses modified for bc ladies. I was the youngest there by about 20 years but they were all lovely. I was the only one in a scarf on chemo.
I now feel like I am back on speaking terms with my body. I think I had been cross with it for letting me down.
All the tension in my shoulders has gone and I am not just a sofa slug.
So glad I went will definitely try again next Tues but treatment day is Monday so will see. I am usually still on steroid buzz Tues so fingers crossed 😊
Relaxing for the rest of today tho.
Oh I was in a cafe yesterday and they had an omelette bap on their breakfast menu 👍
Mai7
Community Champion

Re: May 2017 chemo starters

Morning ladies! Yesterday I was discharged from the hand unit after check up, thank goodness so that's one less hospital visit to make time for.  I've felt a bit yucky this morning, 🤒 I woke up in the night and all under my tongue was sore and my butt is sore too and I have heartburn. Just had a coconut,pineapple and banana smoothie which is really soothing in the mouth. Heaven!

 

Thanks for sharing MJK, that's an interesting article and I'm wondering where the government will find £700 per cancer patient to fund it in the short term! Long term process efficiency should bring down cost per person but unlikely to happen overnight.

 

Ive just bought some coenzyme Q10 supplements which have positive research for many diseases including cancer, I read there is also some evidence to suggest they may help protect the heart from chemo side effects.  The vitamin B and Folic Acid discussion is also interesting because, similarly, people with cancer are found to have low levels of CoQ10. I think what is somewhat unknown is whether these low mineral markers are caused by the cancer rather than being a deficiency due to poor intake. It certainly looks like certain deficiencies are a precursor to cancer being discovered, whether cause or effect.  I'm thinking everyone should be able to get home blood testing kits for general health checks which could be linked into a smart watch for risk assessment. The possibilities are endless! We could become paranoid hyperchondriacs too!

 

Wanderstrong, you definitely deserve the star awards coping with a baby and all of this at the same time ️ 

WolfEE
Member

Re: May 2017 chemo starters

Hi MKJ, thanks I'll look the drops up. Oh that would be great if they test eveyone I'll have a read of the link. Will this be your last FEC on Thursday? I'm certainly getting more tired as time goes on.
I had been on the depot injection for years so hadn't had a period for a long long time. In January I came off the depot and went on2 a mini pill had some spot bleeding while adjusting then periods stopped again. Then....... start chemo warned periods will probably stop and low and beyhold what happens - they come back!! Both cycles so far I've had a period how is that???? I'll see if this 3rd one happens again. I'm glad as proved after years of depot I'm still working in good order but also saddens me that now I know this and it will all be ruined and stopped either with the chemo or possible pending hysterectomy and even tamoxifen I think can impact it. It was almost easier to accept while I wasn't used 2 having the periods.
MJK
Member

Re: May 2017 chemo starters

Hi WolfEE, I use Blink eye drops for contacts as my eyes have been sore 😢 (I'm not wearing my lenses ) no soy. Blood test today, oncologist tomorrow FEC round 3 Thursday. I find I'm quite tired in the last week before chemo although it doesn't help with my period turning up both times. 3 week cycle? What is that about? 😣. Very interesting news about the call that gene testing should be standard for cancer. http://www.bbc.co.uk/news/health-40479533
WolfEE
Member

Re: May 2017 chemo starters

Hep on eye spray - so whilst having my chemo yesterday the nurse told me when I switch over next time start having the 'T' part this one can make eyelashes come out she said get an eye spray ready she said you will soon find out how much your lashes prevent things getting in your eyes and also advises wear glasses.

Anyway I've noticed all eye sprays have Soy in them!!!! This Soy is in eveytbing but I wasn't expecting it in an eye spray that isn't a food? Do you think this will matter what eye sprays have you all been using if any??
WolfEE
Member

Re: May 2017 chemo starters

I want to do some yoga. I will try and find a local class but I feel nervous don't know why. I did boot camps prior.
WolfEE
Member

Re: May 2017 chemo starters

Treehouse, the oil was burning last night it has a really nice smell but I think we put a bit much in because it was so strong. I will burn it this evening just as my sister leaves work so it's active for when she gets in. My smell in a few days will be a bit sensitive for it so I will be burning it as much as possible until then. Nicky said she slept a bit better last night I think the oil helped her. Payday I may buy a kit and oil for my younger sister as a present.

I am ER+ PR+ and highly as positive as it gets I think. I was told this was good by oncologist because the hormone treatment tamoxifen or what ever I may be given should work well. However, and I don't feel comfortable posting on here because others in my situation but I have read that being highly positive (me) diagnosed young (me) family history (me) and lymph node involvement (me) puts me at high risk of reocvurance much later on like 10-15 years time!! I know I have 2 stop reading but these things pop up even when you're searching something else more positive. Most of this i come across looking for inspiration for example 10 year survivor. Then I'll read some thing that gives me hope. I'm a ten year survivor ...... my cancer didn't come back until 17 years!!!! It starts good but then turns!!!

I don't think I see my oncologist now until beginning of August.
treehouse
Member

Re: May 2017 chemo starters

My mum had BC and ovarian. She too was given vit B12 injections. Are you all oestrogen pos?
My bloods have been fine but I am er negative.
I wonder if it is related.....whoever has onc next, ask.
I don't think there is a blood test for BC.
Trisha69
Member

Re: May 2017 chemo starters

Hi Wolfee its this Friday.

 

Re the Folic Acid, same here was picked up seperately from Breast diagnosis.  On the day Oncologist prescribed b12 etc I had a call from my GP to say needed folic acid, blood test was taken pre finding out about BC 😞  strange.

treehouse
Member

Re: May 2017 chemo starters

Wow it is like you are speaking my mind!!!
Huge respect wande. Please be kind to yourself and accept help. Little ones are exhausting.
I spend the day being normal with my mum. She has had 2 knee replacements so we had a very slow shopping trip and lunch. And a 40min drive.
I am shattered this morning.
I have booked a yoga class a the breast cancer haven in the next city for this morning. I really want to go!!!

I think I will drag myself there as I know I will feel better for it. Then rest this afternoon.

Wolfee what did you think of the oil?
WolfEE
Member

Re: May 2017 chemo starters

Trisha when is your next chemo?
katie11
Member

Re: May 2017 chemo starters

Gosh Trish you really have been through it this cycle. Hope you are able to do cycle 3 Fri. Although I guess you are dreading what's to come? I have found that i have been different on every cycle so far. 1st completely fine, 2nd struggled and 3rd somewhere in between . Maybe you will be lucky this time and not have any se. Heres hoping. Make sure to tell your oncologist how bad it's been this time and see if they can help you better in any way. Ask for all the best mouth/throat care available x
WolfEE
Member

Re: May 2017 chemo starters

Prior diagnosis I did have a B12 shot about a month or so b4 I even knew about this horrid mess it was picked out on a general blood test I was low. I have also been on calcium and iron tables for about 18 months or so but was told 2 stop then during
treatment.
Funny that blood test that they saw my b12 low was about six weeks prior diagnosis and not a single hint of cancer was detected not sure what they look for or if eveytbing was tested. I was feeling a bit out of sorts so had the blood test just 2 check things out. Apart from the b12 shot needed as a one off I was top marks on everything else!!
Trisha69
Member

Re: May 2017 chemo starters

Hi WOlfee. have done very little. Sleep pattern is rotten but napping a lot.  Temperature is within the boundaries, higher than my norm but still ok.

District Nurse due this morn clean PICC line and take bloods ready for Oncologist on Thursday.

 

Before I started chemo my levels were low and was put on Vitamin B 12, Folic Acid and Thiamine.  ANyone else on these and do I carry on taking them?

 

One mouth ulcer left.  Thats been the worst side effect thus far.

 

Hugs to all x

WolfEE
Member

Re: May 2017 chemo starters

Yep wandestrong I agree here is another

Trish, I find during my 3rd week I am about a lot making up for things I Havant been able 2 do previous weeks also friends wait until this week 2 visit so I end up having late nights also. Becuse I'm feeling a lot better generally I get fed up at home and as you end up in Tescos a lot. It does catch up on you it really did last week for me and this past weekend I was drained could hardly move and today first day after treatment yesterday I still ache. I believe it's pushing and doing 2 much without realising.
Take your temperature make sure it's not any kind of cold, flu creeping in but my guess is you just need rest rest rest you've perhaps over done it a little.
Xxx
Trisha69
Member

Re: May 2017 chemo starters

Wandestrong!  Toatally agree you need a star.  I hope you have lots of support?

 

My 3rd FEC is this Friday, beeen feeling very run down since my hospital episode with the sepsis.  My daughters have been to visit and we have done nothing bar pop to Tesco and am sooo tired.  My bones in my legs ache.  Feels like Flu is this yet another side effect?

katie11
Member

Re: May 2017 chemo starters

Nice to hear from you wande. It's no wonder you have major fatigue, dealing with this and an 8 week old and a 4 year old. Don't know how you do it. You definitely deserve a star of the day award xx
Wandestrong
Member

Re: May 2017 chemo starters

Hi all,
Sorry I haven't been on the forum much after my second FEC. I'm on day 13 now and feeling good apart from the major fatigue.

AnnieA- not sure if you did get a response to your query from oncologist, but my 4year old is on immunosuppressants for a kidney condition so I'm a lot more vigilant than most when it comes to transmitted illness. Saying that, even with a suppressed immune response, I try to ensure he continues with all normal activities like going nursery and he's hardly ill. Like you said, with chicken pox it's infectious prior to the spots appearing. It depends if your son has had chicken pox before? Mine did when he was 2 (which has turned out to be a blessing), so I'm less worried about it now. The only time I kept him off nursery was when there was a case of Measles a year ago.

On another note, my baby had her 8week vaccinations last week and I was concerned about both me/son because the MMR is a live virus injection, however we were both fine.

Wande x