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August 2016 Starters

Member

Re: August 2016 Starters

Hazel, thanks for posting, I couldn't find your post, but had used discount code. You should give the Heathers Hair fringe a try. They don't have great choice of colours, but you can dye them apparently. The honey blond one I got was fine. I ordered one with a headband and just tied scarf tightly over it. Looks good and seems very comfy. The one I ordered from Wigs for you is fine, but there would definitely be a lot more faffing about trying to fix.
Hope you're having a better day today after your treatment on Friday x
Member

Re: August 2016 Starters

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

 

Hi is the link to some headwear sites, some include discount codes. I ordered quite a few from Anna Bandana, I particularly like the the cotton jersey elasticated "ready made scarves", the prices are reasonable too. I would also recommend come cotton sleep caps, handy for when your hair starts to shed.

 

I am also interested in the Heather's Hair headwear, I've had a look at their website.

 

Best Wishes

 

Hazel. x

Member

Re: August 2016 Starters

Debscoops, I ordered a choice if headwear from both
Deresinaheadwear.com and Annabandana.co.uk. I found the easy tie headscarves from Deresina really nice and gives my head a nice shape. They are probably more expensive than Annabandana, but depends on what suits you and what you want to spend. I did get a few from Annabandana too, but think I will probably only wear those in the house.
In an earlier post, I think Hazel posted about some sites, with a discount code that could be used. I tried to find for you, but can't seem to see. Maybe have a look through July or June Starter threads or chemotherapy tips and tricks.
Also, if you are interested in a fringe to wear under your scarf, I received one today from Heathers Hair. It's great! I did buy one from Wugs4u but this one today is even better.
Hope this helps. By the way, haven't wore headwear yet, as only 13 days post first FEC and hair just cropped today. Not nice 😒 but not as bad as I imagined to be honest.
Member

Re: August 2016 Starters

I have ordered hat and scarf combo and got them today, they are really lovely. Site also has headwear not just wigs.

Hope this helps x


www.wigs4u.co.uk


Member

Re: August 2016 Starters

Hi all,

 

For those of you thinking about going on a Look Good Feel Better day, I've been on one today and it was a lot of fun.  I've written a full review of it here: https://gettingabreastofthesituation.wordpress.com, including a list of the contents of the freebies which are well worth having.

 

FullSizeRender.jpg.jpeg

 

Well worth booking up.  The website lists the venues that host them along with booking phone numbers: http://www.lookgoodfeelbetter.co.uk/workshops-and-advice/dates-and-locations

 

Hope that helps.

 

B x

Member

Re: August 2016 Starters

Hi, I start my chemo on 13 August, I am 9 weeks post op because my oncotype DX result took a while to come back (the person who was meant to send it forgot to) anyway another story,  I am still a little in the dark about what is to happen, and like you are gathering tips from the forums to help me through it,  hope all goes well with you, and keep in touch on forum  Deb

Member

Re: August 2016 Starters

Hi - I am starting chemo on 13 August, and I am wondering if anyone has any good sites for headscarfs turbans etc, I have one and I have tried it on, but I look like terrible, I know I dont normally look gorgeous but I want to a least look a bit feminie ,  I think I may have to try a wig.  Deb  

Community Champion

Re: August 2016 Starters

I put this an another thread when someone asked about help for her mouth, we are talking about ProDentis lozenges. I have bought a pack of 30 and plan to take one a day for 5 days after every session.

 

My sister-in-law had chemo for Non Hodkinson's Lymphoma and suffered terribly with her mouth and her doctor said she should have them. Cannot remember if they were a prescription or she just bought them. Anyway they are  for people with gum disease, see this:

 

http://www.biogaia-prodentis.com/faq/

 

and this:

 

http://www.ncbi.nlm.nih.gov/pubmed/?term=lactobaci​llus+reuteri+prodentis

 

Ask your nurse/doctor if they are ok to take but they are about £20 on Amazon.

Member

Re: August 2016 Starters

Hi Bekah

welcome to the forum, I only joined a couple of weeks ago and find it very supportive and filled with so much information, the forum helps us all regarding information but most importantly hearing experiences of other members is amazing and inspirational to people like us who are just begining this journey.  

 

I am post op of 5 weeks and waiting for my first chemo session on the 11th August. I found out last week that I am having FECT 3 weeks apart for 6 session followed by radiotherapy. The tips here are invaluable as they are tried and tested and passed on.  I am currently purchasing suggestions from members to help me during chemo sessions.

 

Sending hugs

julie

Member

Re: August 2016 Starters

hi Bekah I'm starting Thursday nice to have you join us xx

Community Champion

Re: August 2016 Starters

Welcome Bekah, I am waiting to start but will be on TCH x 6 and my C is the carboplantin. I will get the Herceptin with the chemo then switch to Herceptin in the thigh when chemo is finished.

Member

Re: August 2016 Starters

Hi, can I join in please. I'm going in today to have lymph nodes removed, seeing the oncology team tomorrow and next Tuesday I start chemo. They've not discussed which drugs yet, I just know it's 6 sessions with 3 weeks between each. Xx
Member

Re: August 2016 Starters

HAzel

Would prefer a jab to the leg 😁 Others on same protocol getting it from start but they all seem younger than me so maybe that's how the choices are mad. Glad the sick meds are working , I'm taking everything they've offered me so far ok . All the best for the next few days X Ann

Member

Re: August 2016 Starters

Hi Annietre,

Ah I see, thanks for explaining about liver function test. So you're having your herceptin by infusion on Monday, that's a bugger having to go back to get cannulated again when your arm is sore. It's funny how different hospitals use different treatment methods. Glad you've had a good day. I'm feeling a bit sicky now but taking my anti-sickness meds. Well done on winning the case of wine, something to look forward too. H.x
Member

Re: August 2016 Starters

Not having herceptin by jab until after ive done the TC bit feel for you with the cannula its horrid when they have to go in a few times , my hand is sore today dreading monday . Liver function test is just one of standard blood panel but couldnt start carboplatin big without the results ! Getting the dry mouth but otherwise a good day today will know bettrr after Monday and no reaction to herceptin Smiley Happy won a case of wine today - it might be a while until i can drink it 😂
Member

Re: August 2016 Starters

Hi Ann,

Good news about your MUGA scan. Liver test?? Don't think I had one of those, what does it involve. I'm on TC but Cyclophosphamide not carboplatin, now sure what the difference is really? Oh now, what a shame on your first treatment, well at least you got your chemo. Are you having the herceptin injection into your thigh? It takes minutes but you need to be observed for 6 hours after your first one, then it's just an hour. :-
(. It took three tries to cannulate me for my chemo today, hand and arm very bruised but not too painful. Am worried my good arm won't hold out for the remaining two sessions. See my post on July starters thread. Hope you have a good weekend with minimal side effects. Don't worry about herceptin, it stings ever so slightly going into your thigh but only lasts a few minutes. Hazel. x

debscoops - Welcome to the thread. Your stats are better than mine. I had small lump 18mm removed by lumpectomy in May and also three lymph nodes removed, no spread to lymph nodes. However I am HER positive, Grade 3 so although lump small, quite aggressive hence chemo and herceptin. Without chemo and herceptin my stats were 70%, 86 after chemo and herceptin. I was not eligible for Oncotype test as hormone negative. I didn't cold cap and my hair started to fall out after first treatment around day 14 but everyone is different. My unit doesn't offer picc lines as standard but my veins are starting to go after second treatment so I may have to consider getting one.

Good luck with your treatment and I'm glad you're finding the forum helpful. I have found it invaluable since being diagnosed, so many things the hospital don't tell you, this forum is great for picking up tips.

Best Wishes

Hazel. x
Member

Re: August 2016 Starters

Very useful Bella not doing FEC but my veins already struggling .
Member

Re: August 2016 Starters

Hi Hazel MUGA scan fine but oncology late authorising herceptin so delays at start of day, liver function test clotted twice on the centrifuge do everything delayed in the end because I had taken my steroids I had the TC and going back Monday for H . Veins already struggling.How you doing so far?  Ann

Member

Re: August 2016 Starters

Hi, I am due to start chemo on 13 August,  I had the Oncotype DX test I had early detection of the cancer, and had a lumpectomy (partial removal of breast) and luckily my lymph nodes were clear, but my test came back at intermediate risk of recurrence, so this has been a roller coaster of a decision, but I have decided to have the chemo which makes gives me a 92% chance that it will not recur,  this test is fairly new and the MDT could not advise me as my result was slap in the middle so its a 50/50 gamble but increasing my chances, so for 4 months I thought I would throw everything at it so that I dont regret if it comes back.    I am loving all the chats,  I know absolutely nothing only what I have been reading, I am having PICC line put in the day before, and today had my hair cut short, as I was advised that my hair would fall, (does it always) ?  I have 6 sessions then 4 week radiotherapy at the end.  D

Member

Re: August 2016 Starters

Hi Annietre,

I'm having my second TCH tomorrow. I'm having 4x Taxotere, cyclophosphamide and Herceptin. I also had a muga scan the week before and it came back fine.

Best of luck for tomorrow. Did you have to take steriods today?

Belle, thanks so much for that helpful link. I told my onc yesterday that after much deliberation I have decided I am definitely not using my surgery arm. Despite the chemo nurse telling me it was fine to use it as I only had 3 lymph nodes removed, having read up on it and discussing it with my Breast Care nurse I won't be risking it. Hopefully my veins in left arm will hold out but will request PICC line if necessary.

Hazel. x
Member

Re: August 2016 Starters

Hi All,

 

With you all either just starting or just about to start I thought I'd pass on some useful tips for attempting to keep your veins in good condition while you're having chemo.  These drugs are not kind to veins and those of you on FEC in particular will find it worthwhile doing everything you can to preserve your them if you haven't been given a PICC line or some other permanent access for the duration of your chemo.  We need to try and avoid using our lymph node removal arm if at all possible because of the lymphodema risk so that only gives us one arm to work with.

 

The veins become painful due to two things: inflammation and cording (become tight like cords).  Inflammation is acute while the cording is chronic.  

 

Prior to attending the chemo unit for your chemo, plump your veins up by:

  • drinking 2 litres minimum the day before and if possible on the actual day before arriving at the unit
  • consider drinking miso soup the night before and on the day of treatment.  The saltiness of this helps to lock in the fluid, apparently.  Not tried this myself as my local supermarket doesn't sell it!
  • warm your arm up using a heat pad or hot water bottle
  • wrap your arm in gloves, leg warmers for trip to hospital
  • While at hospital, use heat pad, hot water, all means necessary prior to cannualtion - units seem to be very good at doing this automatically

Between trips for chemo do the following to help veins stay in good shape:

  • use a hot water bottle/heat pad once a day - wrap around arm for about 30 mins
  • if possible, use moist heat (damp hot towels wrapped in cling film) as this is apparently better absorbed
  • Continue drinking as much as possible - 2 litres minimum in days following chemo to help flush drugs out of system.  But keeping well hydrated will help keep vein damage at bay.
  • squeeze a small ball (stress ball ideal but ball of socks just as good) several times a day - helps with pumping blood through veins, veins are muscle, helps to build muscle up.

If/when veins begins to become painful or inflammed:

  • hirudoid cream is available over the counter and on prescription - used specifically for inflammation of the veins
  • if hirudoid cream not available try ibuprofen/diclofenac cream
  • ask a doctor about whether a steroid cream would be beneficial
  • continue with heat & ball squeezing

Cording:

  • massage - as often as practical.  The creams listed above can be massaged in but will have a limit to number of applications so also massage with oil.
  • stretch affected area as much as possible
  • continue with all of the above.

As with any issues, always discuss it as soon as possible with your chemo team.  This information is based on my rummaging around the internet, discussing it with my chemo team and discussion on forum.  It is based on my understanding and I am more than happy to be corrected if I have got things wrong.  I found this pdf which had some advice http://mylrh.org/wp-content/uploads/2009/09/Vein-Care.pdf  If anyone can add anything else which would help, then please do.

 

Hope that's useful, 

B x

Member

Re: August 2016 Starters

I'm starting TCH chemo tomorrow only found out yesterday eve as letters had not been sent out ! Had my MUGA today, so now hoping I don't hear from hospital that there is an issue and I can't start. Nervous but just want to crack on with it now. 

Member

Re: August 2016 Starters

Hi Charley and Madhatter hope you are both feeling well and not too many side-effects im also having fec-t 6 sessions and herceptin on 4th cycle ....counting down to next thursday xx

Member

Re: August 2016 Starters

Hi Charley and Madhatter,

 

Congratulations on having your first chemo! It gets the horrible anticipation feeling out of the way now you've got one under your belt.

 

Hope you both sleep well and have no or minimal side effects.

 

Hazel. x

Member

Re: August 2016 Starters

Hi Charley - we must have been having treatment at the same time today, I had my first chemo today too at 1.30!  It is scary -  I was so nervous and worried but the actual chemo was not too bad.  What treatment are you having, I am having FEC-T, 6 sessions in all.  I know what you mean about anticipating side effects - I am tired but feel it is a waiting game! I start steroids tomo - do you have the same?  I too didnt fancy the cold cap, I recently had my hair cut very short not sure when to shave, if I do!  I will post how I progress, and look forward to reading how you get on.  Sending you hugs, thinking of you and all others on the same journey.

 

Audrey xxx

Member

Re: August 2016 Starters

Had my first Chemo , today feeling tried now , had it at 130 , had a light tea and drinking lots of water  ,  just having a hot flush , as l write , this.   Was really scared , but to be honest , had worse things  having other treatments , over the years , won't be scared next time ,   Having six lots  , every three weeks  part that scares me is the , waiting for the side , effects , if and when they come , going to shave my hair of in a few days , didn't want the cold cap , been reading things on here tips , ect which l will try ,  will share my journey on here with everyone , lots of love leexxxxxxxxx

Community Champion

Re: August 2016 Starters

Just popping on from April 14 thread to wish you all the very best! You will get through this part of the journey- its relatively a short space of time looking back from the other side! You will not get all the side effects and whatever you do get there are medications to help and they are only temporary.
On Saturday 5 of us are meeting up for the second time from our thread we have supported each other through our ups and downs and we now talk about much more than cancer. I found this forum and especially our April 14 thread a lifeline and continue to do so two yeas on! These are ladies that can really empathise with you!
Stay strong and look forward to the things you enjoy and being with the people you love!
Member

Re: August 2016 Starters

Hi Julie2106,

 

I'm jumping in from an earlier starters thread. Also FEC-T. I did 3 x FEC and about to do my second T.

 

The drug you inject is usually GCSF and my one was called Filgrastem.

 

If you do end up with my high temperature I hope your hospital is as good as mine. They had me in a private room hooked up to a IV of antibiotics and a few other drugs very quickly indeed. Only spent one night in hospital as I refused to stay longer. For my other cycles I got my GP to treat me at home. I had infections on every FEC cycle but nothing (touch wood) on T so far

 

Hope yours goes smoothly

Member

Re: August 2016 Starters

Hi everyone 

 

Found out I start FECT chemotherapy on the 11th August with pre assessment on the 8th August.. thank you all who have gone through this, going through this and for posting and sharing your tips and experiences to help others like me..it's so helpful and supportive.. Smiley Happy

 

The appointment yesterday was a lot to take in but I came away with lots of information for support. 

I was told that I have to take my temperature regularly and that if I get a temperature it could be life threatening.. scary stuff, I was also informed I have to inject myself with something at home after chemo but just can't remember what she said now. I'm sure I will get the hang of it like we all do eventually..

 

Warm wishes to you all xx

 

 

 

Community Champion

Re: August 2016 Starters

Hi Blueash I put a bit of Emla cream on my leg an hour before Herceptin & you can't feel the needle going in.  Might be worth a try for your bone marrow injections into your stomach, as you will probably more willing to stick a needle in yourself if it doesn't hurt. I got it from Boots.  The other option to to get your practice nurse to do it, which I did. x

Member

Re: August 2016 Starters

some brilliant tips already i have my list ready for shopping saturday , thanks ladies xx

Member

Re: August 2016 Starters

Hi Blueash,

 

Just jumping in from an earlier thread ( I started Chemo in April and still going)

 

It could be GCSF (Filgramstim or a similar name)

 

I injected this for 5 days as part of my Taxotere and Herceptin cycle. Inject it into my leg as I have a very tickly tummy.

 

Found it very easy but I have injected things before - which may be why. Very small needle and practise helps to find the right, painless bit of fat to inject into. 

Member

Re: August 2016 Starters

Hello ladies, I initially joined the July thread as I was due to start my chemo on 7 July, but this was delayed due to an infection.  I see on this thread that some ladies have had seroma's.  I too had a seroma under my arm, which was extremely uncomfortable.  I had it drained three/four times, which did help initially.  I then got a nasty infection and I was on very strong antibiotics for two weeks.  Eventually things settled down have finished antibiotics last week  - I now have an appointment with Oncologist tomorrow and if he ok with everything am due to start Chemo.  Am extremely nervous as I am sure all you ladies are.  Although I find all the information on here helpful, no one knows really what to expect.  I have tried to gather as much information as possible, but I didnt know about Onicolife!  Now concerned that maybe I should buy some as my nails are dry before start treatment!!! Have any other ladies tried this on nails, I have purchased some Cuticle serum from M&S, should this be used in conjunctionwith Onicolife - can anyone advise?? 

 

Big hugs to all you ladies going through this journey

 

x

Community Champion

Re: August 2016 Starters

Hello girls - I would like to join in. I have no start date as yet because I am having a CT scan before I begin  but my regime is TCH x 6 and then Herceptin injected into the thigh every 3 weeks for a year. The bit that scares me the most is having to inject myself with something to help the blood count. Nobody is more squeamish than I am but they say I will be fine because they will show me exactly what to do. I forget the name of it but 2 to 3 days after chemo I have to inject myself in the belly every day for 7 days.

 

I have ordered some of the expensive nail drops someone mentioned.

Community Champion

Re: August 2016 Starters

Hi Alex Well done on getting your first one done & glad you're beginning to feel a bit better. I think it's important to know it will go away, because we can all put up with something if it's just a few days.  You can put nail varnish over the top, but obviously you have to do your nails yourself, because you need to take off at the end of the day to put some more on overnight.  I found some really nice non toxic nail varnish/remover by Benecos & it was just as good as my usual stuff.  Onicolife is from Mosaic on line & is quite expensive c.£15, but one small pot lasts a while (some places give it to you like a chemo take home prescription, but not the Marsden where I am).  If that's out of your budget, Horses Hoof is about £6 for a big pot or Dada oil about £4. People's nails get awfully dry & start cracking or lift (vile right?), but I was a bit freaked out by the idea of that, so my BCN recommended what I have told you & mine have been normal throughout, although now have a few more vertical ridges than before.  Not sure if they will go eventually.  Hope so! FEC didn't seem too bad for nails but the T is.  She also said keep nails a bit shorter than usual if you can on the T & keep your hands as dry as poss, so use rubber gloves in the kitchen.  Sorry for another long post xx

Member

Re: August 2016 Starters

Bibi44, thanks for that really positive post. I had 1st chemo last Tuesday, and since yesterday have started to feel so much better. Not up to full par, but awful nausea and retching and flu-like feelings all gone. So hopefully as you state, once you get the first 4-5 worse days over you, things start to improve. Before you start chemo, you cannot even begin to imagine what it would be like. I was actually thinking I would be ill the 3 weeks until the next session.
Just a query about the Onicolife drops you mention. Can you use them and then put nail polish on. Or did you not wear nail polish. I like my nails painted.
I hope you are doing well now X
Community Champion

Re: August 2016 Starters

Good luck to all you ladies.  I was standing in your shoes this time last year.  Just wanted to reassure you that chemo is usually not as bad as you think, although it can have its moments of course, it's more an endurance test in feeling a bit rubbish in many small ways, rather than one big awful scary thing.  The things most people get are mainly individually manageable & you won't get them all at the same time.  Most of us did have good weeks where we felt perfectly OK & managed to live life pretty much as normal, albeit not with our hairstyle of choice!  I was on FEC-T & the first few days were challenging, but after that most people see a gradual improvement from day 4 or 5.  Please don't be scared of the actual chemo being administered (we all were nervous the night before), once the cannula is in, it's pretty straightforward & a nurse sits with you chatting the whole time.  Mine told me all about her online dating exploits & had moved in with the fella by my last one! You feel a bit spacey after, so if you can get a lift home, that would be useful.  Then you just gave to sit & wait for something to happen.  Everyone's different, but most had morning sickness (feed with carbs/ask for aprepitant from the outset if at all travel/anaesthetic sick), constipation (take Senna on the day to stop it), indigestion (gaviscon), headaches (invest in some soluble ones that go under your tongue in case you are feeling sickly), chemo brain (watch out when you're driving/cooking as we are easily distracted on steroids), sore mouth (difflam/boots dry mouth mouthwash/swill with soluable aspirin) & bad taste (elderflower).  A few got neutropenia (take temp regularly/call the helpline if at all worried/carry antibacterial gel), but that was the minority.  Put onicolife drops or horses hoof on your nails 3 times a day right from the start. Final word of advice: drink for England day before, day of & day after chemo.  It makes all the difference to SEs. Huge hugs & best of luck with it all. xx

Member

Re: August 2016 Starters

Hi can i join you?started my first chemo last monday and a bit all over the place physically and mentally.good day yesterday but had to cancel my what would have been strenuous holiday today so not so good today x
Member

Re: August 2016 Starters

Great ideas Arnie, I've edited the list and added them Smiley Happy

B x
Member

Re: August 2016 Starters

Hi all, can I add to the list ear plugs for the chemo bag. These are great if hospitalised as is a eye mask. (Think that is on the list already. Arnie x

Member

Re: August 2016 Starters

Hi Vintage, thank you for your reply. I had my MX 13th June, was on antibitotics, they finished. Going to call BCN tomorrow as it is so uncomfortable. Glad to hear yours is now settling down. Some light there.m

Thank you

Arnie x

Member

Re: August 2016 Starters

Hi Belle

Thank you that does help so much.. your list is amazing and has given me the info I need.

Thank you

Julie xx

Member

Re: August 2016 Starters

Hi Arnie,
I hope your seroma settles down soon. I had my MX on the 16th June . I had a hematoma and then infection. So if it is red or getting any more painfull let your nurse know soon as . I went back in to hospital for another few days to get iv antibiotics. I also have had a large seroma like you. I have had it drained 3 times but at last seems to have settled. Just a bit puffy now. 😊
Take care get lots of rest. Vx
Member

Re: August 2016 Starters

Hi all

I am due my pre assessment 2nd August. Different regime regarding chemo from you guys but still with same side effects. Have had MX and am currently suffering with a huge seroma across chest wall and under my arm pit. Drained last week 1litre of fluid and may have a haemotoma so this may already delay the chemo start.  If I do begin August I will follow this thread. 

Thank you Belle for the comprehensive help list and so will start to gather things together when I am more mobile. 

Asked for a picc line but not had an appointment through yet!

Arnie x

Member

Re: August 2016 Starters

Hi Seaview & Julie,

 

I'm so sorry about the cirucmstances that bring us together but you really are very welcome.  It is a very scary time so it's perfectly normal to feel that way.  I'm a little ahead of you (3rd of 6 FEC just done) and have found once I got going, it was easier in someways.  I'm always better doing something than anticpating it.

 

I found being as prepared as possible was the best way for me to handle it.  And I tried to be incredibly busy in the run up.  My first cycle was pretty grim re side effects but my team then adjusted my take home meds and the subsequent one have been better in that regard.  The tiredness/fatigue is cumulative so use this time to stock up the freezer with meals that just need defrosting and reheating - made such a difference to me.  Soup has also been a godsend.  And I have a store cupboard full of nuts and dried fruit for quick snacks.  Eating little and often has helped keep nausea at bay for me.

 

Hope that helps,

B x

Member

Re: August 2016 Starters

Hello

my first post,but lots of looking around...

 

I don't have a date yet but I go tomorrow for my pre assessment for a walk around the oncology and meet the team and discuss my treatment plan. I know I will be having 6 sessions over 4months 3weeks apart followed by daily sessions of radiotherapy for 3 weeks. I'm 4 weeks post op from lumpectomy and feeling OK,  however I am so scared of going through chemo. I was hoping not to but cancer has spread to lymph nodes.

 

I have found so much support on this forum and thank you all for your encouragement and kindness.

 

Julie xx

Member

Re: August 2016 Starters

I'm starting early August (no date as yet). 4 rounds of TC with herceptin followed by tamoxifen. I've had lumpectomy and SNB with nodes clear. It's all a bit scary more so due to the fact we don't know what to expect I suppose. This will be really helpful to speak to others going through the same xx
Member

Re: August 2016 Starters

I did exactly the same when I was about to start! Ended up spending days searching for it and when I found it I printed it off. Not that I'm obsessive or anything Smiley Wink xx
Member

Re: August 2016 Starters

Thank you Bell
I had came across this list a few weeks ago but never saved it. I have been searching for it the last few days! So fantastic you must have read my mind. Very helpfull x
Member

Re: August 2016 Starters

Hi ladies,

 

Great to see you here already. This is a very long post, sorry - but I hope it is of help to you.

The information has come from an old and long thread but it is still a useful list as you are approaching your treatment. This list was started by Princess, reposted in 2008 and most recently updated by Sue H-S who is often around and part of the May 2016 group.  A big huge thanks to all the contributors who have added their tips over time.

For the Gums: 

Ensure you see your dentist before commencement of treatment to get everything sorted, including Hygienist. It will ensure your mouth is in a healthy state and may help to reduce some side effects.

  • Bonjela
  • Corsodyl daily for x 3 and Corsodyl normal for 1 (dentist recommended), mouthwash should not contain alcohol
  • ultra soft bristle brush/baby toothpaste
  • Aloe Vera based toothpaste, Beverley Hills gum strengthening toothpaste

For the mouth: 

  • Gelclair, salt water wash, Oraldene, tonic water, Difflam mouthwash
  • Aloe dent lip balm with lysine (good for cold sores also),Nivea Lip butter – try to ensure the lip balm is paraben free, especially if you have a hormone receptor positive diagnosis.

Bad taste: 

  • pineapple (fresh/chunks/drinks/lollies) - Haribo (not Tangtastic) - celery, mints, fresh fruit, pear drops, cola cubes, sherbet lemons

Water tasting odd: 

  • flavoured/sparkling water, fruit squash, fruit infusers

Nausea: 

 

  • Ginger (Rochester Ginger drinks (Holland & Barrett, Tesco Nurticentre and on-line stores) ginger beer, biscuits, sweets, fresh ginger)
  • smaller, regular meals
  • V8 vegetable juice
  • Manuka honey with hot water and peppermint oil
  • Slippery elm powder mixed into natural yoghurt
  • Banana for early morning with the anti-sickness tablet
  • Flavoured/green tea if can’t face milk or dairy products in tea (dairy – if you can go organic should you have hormone receptive diagnosis)

Light bites suggestions

  • cream cheese and bread sticks
  • Nothing spicy
  • Flat lemonade
  • Plain biscuits
  • Banana/peanut butter sandwiches
  • Travel bands/anti sickness bands (Poundland cheaper than Boots) - be careful with arm that's had lymph nodes removed if using these, they may be too tight.

General Wellbeing/During Chemo: 

  • Carry your card and thermometer with you all the time and keep bag packed
  • Get a medical alert bracelet or neckless if you had a sentinel node biopsy or node clearance stating no BP/IV (either RT arm or LT arm depending on which side the procedure was done) Lymphedema Risk
  • Chemo Caddy – see below
  • Pin up emergency numbers where everyone can see them – who to contact and when
  • Check with your consultant who to phone at evenings and weekends
  • Store emergency numbers in your phone
  • Digital thermometer if not given one by hospital (Poundland cheaper than Boots)
  • Drink LOTS of fluid before and after chemo - Lucozade for energy - Light meal before chemo
  • If having CMF and nose issues when Chemo being administered then sweets or lolly , ice lolly to suck during (small cool bag also recommended to keep lollies frozen)
  • Bath pillow (helps prevent cold bald head on cold bath)
  • Don’t take steroid dose after 2pm (awake/energised at wrong times), best time is in the morning
  • Eat fruit when you need to eat whilst/before taking tablets
  • Avoid alcohol for 2/3 days after chemo
  • Keep out of direct sunlight, ensure you have paraben free suntan lotion with SPF50 zinc oxide based and BB cream or make up with SPF
  • To avoid risk of infection – try to avoid un-pasteurised dairy products, wash veggies, meat properly cooked
  • Accept help wherever offered!
  • Prepare/buy nice food in advance for bad days

Sleep when you can

  • Fresh air - Exercise - Laughter - Ask for help if really sick! Talk to you GP for additional drugs!
  • Runny nose through loss of nose hair – tissues!
  • V-pillow
  • Check and see if GP can refer you to local leisure centre for cheaper use of fitness suite and swimming pool.
  • Constipation - breakfast of high fibre cereal/fruit smoothie/prune juice/Senna tablets
  • Sore Eyes
  • Boots hay fever relief drops
  • Cooling/chill eye mask
  • General eye mask to block light if affected

Headaches

  • gel pads (stick on kind used for infants/migraine)

Dry skin/rashes/spots from Taxol

  • gentle moisturiser for hands and feet (Paraben free)
  • drink lots of juice and water but leave spots on face alone as skin sensitive

Hair loss/head coverings 

  • buffs
  • baseball cap
  • sleep caps, scarves, bangs, eyebrows, eyelashes, wigs etc
  • don’t wash it too often, use baby shampoo
  • Eylure great for brow stencils and brow pencils, false lashes, etc.
  • Amazon for real hair stick on ‘brow wigs’
  • Chemo bag Keep a bag packed in case of emergency hospital visit and to take on chemo days. Pyjamas, warm socks, clean knickers, wash bag with spare toothpaste and brush, face wipes, mirror, tissues, bag of pineapple pieces, anti-bacterial hand gel, book, ear plugs.
  • A basket with a handle (previously from delivery of pot plants) with everything needed in it so that you can have it by the bed upstairs or carry it down to crash in front of TV.

Chemo Caddy 

  • A basket with a handle (previously from delivery of pot plants) with everything needed in it so that you can have it by the bed upstairs or carry it down to crash in front of TV. (A bum bag has been suggested as keeps both hands free and no restrictions on your shoulders and particularly Snugpak Response Pak (online) as “tested in war, never beaten” and big enough to take a tool kit/chemo caddy or chemo bag).

CHEMO BAG AND CHEMO CADDY 

  • Edibles – ginger biscuits, minty chewing gum, root ginger to nibble.
  • Treats – nice hand cream, chocolate, octopus shaped back massager, nail cream, buffer.
  • Essentials – tissues, glasses, lip salve, bottle of water, straw (in case can’t lift head from pillow), little bell (to summon family to fetch/make tea)

Once again, all credits to the ladies who have added to this making it an invaluable reference tool and thanks to Princess for starting it!

 

Hope this helps Smiley Happy

B x