August 2018 Chemo starters

[Jude1962]

Hi Cat

I'm the same trying to eat better & exercise more, although I have had a bar of chocolate today!

My diet was shocking during chemo & I’ve put a good 7-10lbs on - got to lose it as I’m going to Mexico in just over 6 weeks!

jude x

[Jude1962]

Hi Jo

That sounds good, you’ll obviously get monitored more which can only be a good thing

Hope you don’t have any tricky side effects

Jude x

[Cat67]

Hi Jude,
Thanks for sharing the link, interesting. It’s hard to know what to eat and drink sometimes isn’t it! I think ultimately I will aim to have a well balanced diet, maintain a healthy weight and take regular exercise.
Great that you have a plan in place, I don’t have one yet but suspect it will be similar. Although I wonder when/if they perform scans as a way to confirm there is no longer any evidence of disease (NED)....

Hi Jo,
Good luck with the trial! My understanding is that another positive about being on a trial is that they will keep a close eye on your health.

Best wishes. Cat 😘

[Sunflower18]

Hi Jude,

Its the MonarchE trial, phase 3. Basically the drug is already being used for patients with advanced BC (hormone positive) as it reduces growth/spread. The trial is looking at whether the drug will prevent recurrence in people that have had hormone+ve BC. I’ll still have my treatment as planned - hormone therapy and biosulphates but with the added drug.

Jo x

[Jude1962]

Hi Jo
Good luck with the trial, personally if I was on a trial I think I would want the actual drug concerned
Which trial is it? Apologies if you have told us previously - memory like a sieve!
Jude x

[Sunflower18]

Hi all,

Just a little update- I’ve signed up to a trial and have been randomised to get the drug! 

Initially pleased about this but pick up drugs tomorrow so starting to get apprehensive 😬 

Jo x

[Jude1962]

Jo - yes it was good to be know how it will work going forward & I do like a plan

Good luck with your appointment x

[Sunflower18]

Jude,

That all sounds positive and some reassurance to know you will be having mammograms regularly for ten years. 

Im seeing my surgeon on Friday and like you I had surgery in June. Hopefully I’ll get a follow up plan as well.

Take care

jo x

[Jude1962]

Quick update
I’ve had an appointment with the surgeon today (my op was last June) he’s very pleased with how I’ve healed from the surgery etc 😊.
I’ll have my next mammogram in June, then on an annual basis for 10 years (I was expecting 5 years).
Providing mammogram is ok in June I’ll then be discharged from the surgery follow up clinic. The breast care nurses will still be accessible if I have any concerns.
I think I will keep seeing the oncologist until I’ve finished the herceptin injections which will be end of September
x

[Jude1962]

Hi ladies

For those if you starting on tamoxifen, I’ve just seen this on another forum

https://www.medicalnewstoday.com/articles/292879.php


Worth a read x

[Cat67]

Hi Jo,

Aren’t we the lucky one’s! 😂
Hopefully we won’t even notice..... 👍

Cat 😘

[SB1610]

Thanks for the link Tarnia

Sue x

[Tarnia]

Found this link regarding Asprin and cancer

https://scienceblog.cancerresearchuk.org/2012/03/21/aspirin-and-cancer-the-picture-becomes-clearer/

[Tarnia]

Hi again Sue
I also take Tumeric 😂😂 my husband started taking it for his knees (he needs new ones but us too young ) and he swears by it! And again if you google it Tumeric is good for so many things including cancer so that’s why I started taking it also! It’s a natural anti inflammatory which is why it’s good for joints.

Tarnia x

[Tarnia]

Hi Sue
I will try find the link and post it.
My oncologist told me the way it works is by thinning your blood so it’s not so sticky therefore cancel cells are less likely to stick to platelets and be transported around the body. Another reason why I didn’t want to do the trial because I could have 1. Been given fake Asprin 2. Been give low dose Asprin or 3. Regular dose Asprin and I didn’t fancy taking regular dose everyday 😐 I know stomach ulcers can be a side effect of Asprin but for me the chances of it reducing a recurrence outways the chances of a stomach ulcer!
See what your oncologist says they are the experts after all.

Tarnia x

[SB1610]

Tarnia

Thanks for the tip re Add Asprin
I'll see what my onc says. Do you have any links you can post re the positive link between cancer and Asprin?
I must admit I was a bit freaked last week after reading negative things about taking regular doses of Asprin - it was in the Daily Mail though so not sure how factual it might be 😬

Sue xx

[SB1610]

Hi Jude
Good job on the colour and hopefully it will thicken up quickly.

I've got an appointment next week so I'll ask about the supplements you take.

Someone I've been talking to today swears by tumeric for achy joints - I've heard of this before so will look into it and speak to the oncologist and my GP. Anyone else use tumeric?
Ive just had the last of my 4 complimentary acupuncture sessions to help with hot flushes - I can report that whilst they haven't gone completely they have receeded in both volume and intensity of occurrence so definitely worthwhile looking into. If anyone is under Weston Park in Sheffield you can get them free at the cancer support center.

Hope you are all well and keeping warm - it's a bit nippy out there today in Yorkshire.

Sue xx

[SB1610]

Hello
Calling all ladies looking for holiday insurance - I've just got a really good deal with Staysure - £118 for a comprehensive annual policy for Europe covering my BC and my other halfs IBS. It would have been £96 had I not needed cruise cover!

Sue xx

[Sunflower18]

Hi Cat, 

I’m on Letrozole and not Tamoxifen but hair thinning is also a SE of that drug!

jo x

[Cat67]

Hi Jude,
I will give Good to go a call once I get something booked up....I better pull my finger out and get it sorted! I’m hoping I get a good covering of hair before I go too! Don’t forget to bring your sun block 😀
Hi Tarnia, I guess there are pros and cons of having ongoing treatment; and I just have to hope I don’t suffer too badly with SEs.
Jude, I agree with you, this forum has been a great support as we go through our treatment 🙏 🙏
Take care ladies 😘

[Tarnia]

Hi everyone 

Sue, I got offered the Asprin trial but I didn’t like the placebo part as I’ve read before how well Asprin works against cancer! So I spoke to my oncologist about it and she’s happy for me to take a low dose Asprin every day 75mg which you can buy of the counter. You could do this yourself too and then you wouldn’t be part of a trial so wouldn’t get problems with insurance 🤔 ....just a thought x

Jude, I’m so glad your hair was a success. Don’t worry about it still being thin in places it won’t take long to thicken up, will be getting thicker everyday x

Cat, I’m triple negative so after radiotherapy I’m on my own 🤨 there is no targeted therapy for tripple negative but hopefully your hair will be just fine on Tamoxifen X

lots of love all

Tarnia x

[Jude1962]

Hi Cat

We are going to Mexico mid March for 11 days & we are using Good to go insurance - £260.

I’m on herceptin & bisphosponates & my husband had a brain haemorrhage 12 years ago & is on medication for epilepsy & high blood pressure; so I didn’t think that was too bad

I'm not brave enough to go without headwear or a wig yet, mainly because the growth & thickness is patchy in parts. Although I do sit around the house & answer the door bareheaded 😂

I've got 7 weeks until we go to Mexico so I’m hoping it loooks ok by then

Sorry I was ERnegative so don’t need tamoxifen - hope some of the other ladies can assist, good luck with it 

I also just wanted to say how useful this chemo thread has been for me, I think it’s really helped with the physical aspects of cancer/chemo & also the emotional side of going through it with ladies who understand - thanks to all of you 👍

Big love

Jude x 

[Cat67]

Hi Jo, don’t be too hard on yourself, your doing really well with the exercise. I can’t even imagine running but I am walking most days.....my goal is to do an average of 10,000 steps every day and looks like this week I will do it for the first time! 👍 I wish my hair was blonde too but given I dyed it that colour for years that is very unlikely! 😂

Hi Sue, We’re hoping to go away for a bit of sun in March (not booked it yet) so just starting to look at travel insurance, but I’m not on a trial so haven’t come across that problem. It might be a case of ringing a few different insurers. Difficult decision to make about going ahead with the trial or not.

Hi Jude, good to hear the colour took well, never really know what it’s going to look like until you give it a go and at least we can experiment with different colours for a while 😄 Are you going without wig/hat now?

I’ve recently started taking tamoxifen and one (of the many potential side effects) is hair thinning so I am praying that I’m not one of the unlucky ones who gets that s/e! Anybody else on Tamoxifen? How are you getting on?

Take care ladies
Cat 😘

[Jude1962]

Sorry Sue - meant to say

I’d got to the end of week 3 on couch to 5k & was struggling with my knees hurting so I started taking high strength glucosamine & chondrites tablets (that I used to take pre cancer) & within 3 days the pain has gone - you may want to check with your onc before taking, although I haven’t 😁

Jude x

[Jude1962]

Hi Sue

Yes I had my hair coloured yesterday!

My hair has took the colour well, the only issue is that where the hair is thinner you now notice the fact that there is less hair.

I went for a light brown but would probably have been better going for a dark blonde as it may have been less obvious on the thinner areas.

I can’t decide whether it looks better or worse! Presumably this is why they say wait 6 months before colouring!

I’m going back to the hairdressers in 3-4 weeks so if it keeps thickening up it will then look better after the next lot of colour. The only decision will be whether to stick with this colour or not

Jude x

[Jude1962]

Hi Jo

Try not to overdo it, I think we all want to feel more normal & to try & do what we can to improve our health by exercise etc but we do need to be careful
I saw my oncologist early jan (all ok) & am due to see again early March. I’ve got an appointment with the surgeon this Monday - I think he will advise timescale for first mammogram since diagnosis/ treatment

Jude x

[SB1610]

Hello All

Jo - I'm seeing my onc at the end of Feb for follow up (don't need to see the surgeon again) but I also have an appointment to discuss the Add Asprin trial early Feb. I was really up for doing this but I'm starting to waiver a bit - I've been looking into holiday insurance and it seems that a lot of insurers exclude trials - given that Asprin can cause some issues with your stomach I'm a bit reluctant not to be fully covered?

Has anyone else come up against this type of exclusion and have you found a solution?

Sue xx

[SB1610]

Hello All
Grrrrr - best laid plans and all that - I successfully did my 1st run on the couch to 5k on Thurs and was really pleased with myself that I persevered and didn't give up to have woken a hobbling achey mess on Fri. I was fully intending to do run 2 today and even set the alarm for 8am so I'd have plenty of time before meeting a friend for brunch at 10:30 but when I woke at 7 and could still feel my achey hip whilst still lying in bed after being horizontal all night (and it's joint ache rather than muscular) I abandoned the run in favour of lower impact cross trainer. So still exercise but not what I wanted - hoping the aches recede and that I can recommence and do run 2 over next few days. Any tips on what to do for an achey hip joint??

Cat - my hair is very salt and pepper too - it seems to change on almost daily basis so I'm wishfully hoping it will magically turn back to blond again!!

Jude - was it Friday you were having your hair coloured? How did it turn out?

Sue xx

[Cat67]

Hi Jo,
Sounds like we are both slow starters but now the hair is growing maybe it will get a spurt on over the next few weeks! 🤞
Lucky you that your hair is coming through dark so far. Mine has a salt and pepper look to it, with more salt than pepper! 😂😳
Cat 😘

[Sunflower18]

Hi all,

Sounds like everyone is doing well with exercising. My work colleagues are doing the McMillian mighty “Thames path” walk in July, it’s a 26mile walk. I was really tempted to take part as well but unfortunately (!!) I will be away on holiday, so I can’t!

I try and go out for a walk every other day - 2 miles and then a 5 mile walk at weekend, so slowly getting my fitness back. I want to try and get back to the gym but I need some advice on what exercises would be good, especially as I had full node clearance and I need to be careful of lymphodema.

Im back to hospital on Monday to sign up for a trial and then back on the Weds to see whether I get given the drug or not.

When are you all seeing your surgeon/oncologist again? I’m due to see surgeon beginning if Feb and onc end of Feb.

Take care

jo x

[Jude1962]

Hi Cat

The radiotherapy consultant gave me some cooling dressings which you lay/stick on to your chest area. When they warm up you remove & they cool down again so you can re-use, they did help the need to scratch. Mention it to the radiographers as they might have something similar you can use. It’s a month since my last session & my tanned area has nearly faded.
With regard to the dye my hairdresser did a patch test & I didn’t have any reaction, she is going to use a dye specially to colour grey/white hair - wish me luck!

Take care

Jude x

[Sunflower18]

Cat,

I am relieved that I am not the only one without much hair! I finished chemo mid Nov and I have just about got a very fine coverage of hair. On a positive it does have a very dark look to it, which is great as I was brunette before, so here’s hoping it stays the same....perhaps without any grey.....wishful thinking 😀

jo x

[Cat67]

Tarnia, I’m using a cream called Biafine, saw it recommended on a forum and thought I’d give it a go. I’ve also heard Aveeno and E45 are good. I think the trick is to moisturise regularly, whatever you use.

Jude, what did you use for the prickly heat rash? I’m on Day 9 and the area is just starting to get very very slightly prickly.

Tarnia/Jude/Sue, sounds like your hair is growing quicker than mine. I’m 6 weeks post chemo and only have a little hair, but at least it’s growing! 😀 It’s too short to know if it will be curly yet! I was also advised to wait for 6 months before dying hair but I think it depends on the type of dye used. I was pleased to see my eyelashes have started to grow back this week, hooray! 👍

Sue, good luck with the training for the race for life. So far I’ve just managed some walking each day so will see how I go!

Take care ladies 😘

[Jude1962]

Will do Tarnia, fingers crossed it takes ok x

[Jude1962]

Hi Sue

I am a bit nervous about the colouring as everything I’ve read says to wait 6 months, but I can’t bear this white hair any longer - I’ve got odd dark hairs as well which look a bit weird. I started going grey at 18 so I’ve dyed it ever since - I’m 56, so now I’m white haired without eyebrows & eyelashes, this is not where I thought I’d be a year ago 😂

I’m not a runner but I started couch to 5k first week in jan & today I did my first run on week 4, surprisingly I’m enjoying it even though it’s been cold & icy some days. I’m not intending doing a 5k race but I’d love to be able to run for 5k

i don’t mind the change - my eyesight must be going as I find it easier to read! 

Take care

jude x

[Tarnia]

Hi Jude

please let me know how the hair colouring goes, I’m almost 8 weeks post chemo and I’m desperate to colour mine too! 

Thank you ladies for tips on what creams worked for you during radiotherapy i will get me a supply ready.

Sue, well done you for signing up to Race for Life in June, you will do great I’m sure. I’m thinking of joining one of fund raising activities just haven’t decided which one yet. I’m already a frequent runner so fancy doing something different.

Take care ladies.

Tarnia x

[SB1610]

Good luck on the hair colouring Jude. I'm too much of a chicken to have mine done yet but I must admit I'm still wearing a wig whenever I leave the house as I really don't like the short hair - either colour or style. I was blond but it came back white but is turning increasingly silver / grey with dark brown in it!!!! I've never been brunette - always blond so it's gonna look really odd against my blond eyebrows 🤣.

In other news I've been encouraged / cajoled / bullied by friends into doing the Race for Life in June 😬. I'm looking to start doing the Couch to 5k challenge to get ready for it - any other aspiring runners out there fancy joining in? We can move from shared stories of chemo SE to shared stories of wheezing, hobbling and pulled ligaments. Whilst I used to be quite sporty at school I always used to avoid running if at all possible - I even used to offer to coach younger years for netball during PE rather than do a cross country run so this is kind of a first for me - not really sure how I'll take to it - give me a cross-trainer or yoga class any day.

Hope everyone is ok - stay warm ladies - if you believe the papers Armageddon in the form of a bit of snow is on its way ❄️🌨️🏂☃️

Sue xx

PS what do you think to the new look website? The June chemo ladies sound as if they are going to stage a rebellion 😂😂

[Jude1962]

Hi Tarnia
Hope the radiotherapy goes ok, I used Aveeno body lotion twice a day & it was fine. I also drank loads of water! I did get a prickly heat rash but it only lasted about 2 weeks.

I didn’t cold cap so I lost all my hair but it’s coming back quite well, unfortunately it’s white/grey! I’m using Nioxin which seems to be working as it is thickening up rather than a lot of length. I can’t wait until it is long enough to put a parting in!
I’m having mine coloured this Friday (it’s 10 weeks since my last chemo) so I’ll let you know how I get on

Take care - hope everyone else is ok 😁

Jude x

[SB1610]

Hello Tania
I used E45 lotion throughout my radiotherapy - started before treatment using it daily and then 3-4 times each day during treatment - i took some with me and applied it after being zapped before I got dressed again. I finished radiotherapy last week and still use the cream 2-3 times day - so far no problems.

Good luck
Sue x

[Tarnia]

Hi Jo

I worry about a recurrence all the time 🙁 the thought is never far from my mind ( my cancer was 7mm with no nodes). I have booked a holiday for August this week but continually worry I’m tempting fait 😕 I’m hoping with time that worry will fade!

I’ve recently been for my first radiotherapy talk and been tattooed ready. Think I will start around 6th Feb. I’ve been given some AQS emollient to use when I start has anyone else used this? And what do you all recommend? 

Now a hair question...because I cold capped I have quite a bit of hair already but very very grey! Does anyone know if I’d be ok to dye it now? Or should I wait a few more months. It’s also very dry and never seems to need washing I honestly think I have no oils left in my body at all! Oh yes and all my new hair is curly where as my existing hair is still straight 🤨 hope it will all sort itself out soon. Anyone else have curly hair coming through?

take care all.

Tarnia

[Cat67]

Hi Jude, interesting....I had a sore nose/nose bleeds during chemo but I’m 5 weeks post chemo now and nose feels a lot better and no more nose bleeds...up to now anyway! Thanks, I’m hoping the SEs from Tamoxifen aren’t too bad, time will tell 😀

Take care all 😘

[Jude1962]

Hi Cat
I have had a few nosebleeds though, I had one this morning which made me think as I’ve only had them since I started herceptin - not that it’s down as a side effect
Good luck with the tamoxifen, hope u cope ok with it
Jude x

[Cat67]

Hi Jo, sounds like you have a perfect return to work plan...good to ease yourself back in gently. Agree about hospitals having their own policies, I think it also depends on your Oncologist. Generally I’ve been positive about the future but I also worry about a recurrence, I think that most of us do.

Hi Jude, that’s good that you haven’t had any SEs from Herceptin. Because I have recently finished chemo, continuing to have Herceptin, started Radiotherapy and about to start Tamoxifen it may be difficult to decipher which SE is from which treatment 😂 I get some body aches and some tiredness but sleeping less during day now too. Glad to hear your keeping your brain active seeing how many questions you can get right on The Chase! 😀

Take care everyone 😘

[Jude1962]

Hi Cat
Up to press I don’t appear to have had any side effects to herceptin. I generally feel a bit tired around 5pm but then pick up after I’ve watched The Chase! I’ve not had a nap during the day since late November & I do have a broken sleep during the night. Hopefully when I’m back at work & have a consistent routine my sleep will improve.

Jo - I do think we all have a little worry about recurrence, I know I do & it wasn’t even in my lymph. Maybe that improves as the years go on...

Take care all

Jude x

[Sunflower18]

Hi all,

I should mention that although I am back at work, it’s not exactly full on......I get in for about 10.30and leave at 2, I like to think of it as acclimatising to the world of work! I will also be off for all of the school half term and most of the Easter break......slowly does it! 

I had Weds off this week as well.....

At the end of day you have to do what is right for you and your body. I found sitting home made me contemplate and dwell on the negative things around cancer and the treatment. I was constantly looking on the internet for things that I don’t really want to know.....but for some reason it helps me deal with everything. If I’m at work it takes my mind off things and helps me move on and upwards! 

However, I am am really worried about it returning, I think because I had it in 7 nodes and yet the tumour was only 22mm it has freaked me out a bit as to how such a small thing can cause such havoc.

I know I’ve had surgery with good clearance, chemo, radio, hormone therapy, biosulphates and my body no longer feels like my own but I still think there may be stray cells lurking ready to re-emerge. Is it just me or does anyone else have these thoughts?

I suppose I need to look at it that we have been lucky, we found it when we did and we have had treatment to hopefully enable us to enjoy life again and that some people don’t get that chance.  What will be, will be......Positive thought number 1 of the day xx

Cat, I will also ask about Tamoxifen/Letrozole - sometimes though I wonder if it just the policy of the hospital you are under as to what you get given. Some people seem to start on Tam and then move to Letrozole after 2years- who knows!

Take Care all and enjoy your weekend. 

Jo x 

[Cat67]

Hi Jude,
Sounds like you got your energy levels back very quickly which is great! Do you find the Herceptin makes you tired?
I agree that going back to work is a very individual thing and depends on lots of different factors. I think it’s natural to feel nervous, I’m not planning to go back for a while and already feel a bit anxious when I think about it.
I looked on YouTube at some of the hair growth videos you mentioned, I have to accept that hair growth is going to be slower than I’d originally anticipated. Although in the last few days I’ve sprouted a few ‘normal’ hairs which is progress! 😀

Take care ladies 😘

[Jude1962]

Hi Sue

Well done on finishing your rads, it is an emotional moment, I think because it’s the end of active hospital based treatment although in some form or another we will all be having injections or medication for a good few years!
My last rads were Christmas Eve & I was still tired over Christmas & new year but am now feeling tons better & more like myself!
My plan is to go back to work 4th feb but I only work 4 days mon to thurs, I am expecting to be knackered & I feel a bit nervous as to how I’ll cope but am gong to give it a go. Saying that I think you’ve got to listen to your body & see how you feel. Don’t push yourself too hard
Take care

Jude x

[SB1610]

Hello Cat and Jo

Well done on going back Jo - I'm not sure I could even consider going back so soon so I admire you for doing so. I really don't think I'd be ready either physically or emotionally.

I think I'm thinking a bit more along the lines of you Cat and having a few months between finishing radiotherapy and going back. At the moment I'm feeling reasonably ok but I keep having to remind myself that's on the basis of getting up, having a potter getting breakfast then having a sit down before getting a shower and then another sit down before going out to Tesco or wherever and then coming back and having a snooze before getting tea ready for my partner coming home. I'm really not sure I could be up before 7 and ready to leave the house by 8 to head off to work! I had an early radiotherapy this week which meant I did leave the house before 8 and I was so tired that afternoon I slept through two missed calls (I was actually holding the phone in my hand at the time - I nodded off reading the BBC website) and only woke up when he was stood in front of me asking if I was ok! I hadn't really thought about it but what your GP says does make sense esp as they brought someone in on a temp contract to cover my role.

Thanks both xx

[Cat67]

Hi Sue,
Congrats on finishing radiotherapy! 🛎 I hope you’re enjoying your well deserved night out. I felt emotional just reading your post!
After radiotherapy finishes I will still be at the hospital for my Herceptin injections every 3 weeks so will still have that connection which may help...time will tell.
Work have been great with me too. I also have a full on job so not making any final decisions about when to return as want to ensure I’m ready.....and this is coming from someone who before this had 5 days off sick in 20 years! My current thoughts are to have a couple more months once radiotherapy finishes.
My GP said something that made sense to me....she said that employer will ultimately not remember whether you took 8, 9, 10 etc months off but if you go back too early and end up going off again because you weren’t ready then that will be worse for everyone.

Hi Jo,
I will ask about the Tamoxifen versus Letrozole in more detail next time I see my Onc. And yes also on on Bishosphonates (Zoldronic Acid).

Take care all 😘

[Sunflower18]

Sue,

Well done on finishing your treatment. I was emotional as well and just about made it outside the hospital before I shed my tears. I had to sit in the car for a while before I could drive home. I wasn’t as jubilant as I thought I would be, I think as you have said, I don’t want to jinx it!

i finished radio last week and I must admit I also feel “in limbo”. -it is a weird feeling having had so many hospital appts and now nothing until I see my Oncologist at the end of Feb.  Our security blanket has been taken away......

In respect of work, my organisation have been fab with my time off and I have been back in for a few hours this week. I’m basically on a phased return, returning to full time over a 4 week period but I also have loads of annual leave to take before the end of March, so I don’t think I will in work much. 

Enjoy your our night out and your days without hospital appointments 

jo x