June 2021 Chemo Starters

[Fairie]

Hi Sain 

I too am trying to make the most of the time before chemo starts on the 15th. Mine will be given over two days I’m told. 
herceptin and doce? And carboplatin 

very nervous.

will think of you xxx

[Fairie]

Thinking of you xx

how did it go?
I have my first next week over two days... xx

[Fairie]

Dear Simplyeve

my heart goes out to you and your family. Heartfelt condolences to you. 

I too have been in a similar situation with my MIL in March and it was just so distressing what with my diagnosis too. My husband didn’t know whether he was coming or going bless him😔

thinking of you and thank you for thinking g of me and taking the time to message. That’s sooo kind and thoughtful ❤️

I have my first two days of chemo and Herceptin on the 15th and 16th next week🥴

very nervous of what side effects I experience. 
I feel very well now but preparing myself to be very unwell😔

dreading it to be honest. 
Any advise welcome. I’m having Doc ??? Carboplatin and the Herceptin. 

my love to you and everyone xxx

[hopeful1974]

Hi @Flower123 it is very good to hear your scan was clear. The waiting is terrible, isn’t it? I know exactly what you mean re the emotional impact. I have had some counselling which I received from CBT Clinics via Macmillan. I also had some which was offered by my hospital. I have gone onto antidepressants in parallel with that which are helping to keep my mood more stable. Antidepressants are very commonly prescribed for those in cancer treatment and I just see them as part of my medicine. I think that sharing on here should also help all of us a great deal. xxx

[Flower123]

Hello Everyone,

Im not sure yet if I will be starting chemotherapy this month but have oncology appointment Mon 14th .Not sure how long it takes from this to first chemotherapy. I am 50 yrs old and had a lumpectomy and all nodes removed on April 30 th . I had 8 nodes of 18 with cancer and have been told that there is some pre non active cancer cells at edge of margins that will need another operation after chemotherapy. I have been told chemotherapy, operation, radiotherapy and hormone therapy. I had a PET scan last week and was told it has not spread to any parts of body which was AMAZING!

This is such a very scary journey and I find it very hard to keep emotions together.

I am ER+ and HER 2 neg .

Hope I’m on this June start as you all sound lovely x

[hopeful1974]

Hi @simplyeve , so sorry to hear about your mother-in-law. I echo everything @Trowster said. Not what you needed just now.

I am pleased to have a twin going through the same chemo as me. It will be interesting to see what different side effects we get. Hopefully not too many!

Take care of yourself and let others look after you as much as possible. Siân xxx

[Trowster]

simplyeve, I am so sorry for the loss your family has had, it must of been a very anxious time for you all and not something any of you expected or could foresee happening, to think of all of us at this time shows just what a kind and thoughtful soul you are, try not to overdo things but I’m sure you must be running on adrenaline and having to sort out her house isn’t a quick and easy job, could you maybe sort what you want to keep and get a house clearance company in, my friend did that with a company from Chester and they totally cleaned his MIls home when they had emptied it, I remember with my mum the council let me keep for a couple of weeks longer so long as I paid the rent, take care of yourself and hope hubby is doing ok, Mums are very special there the glue that holds the family together and nothing can replace them, hope soo goes well for the funeral and that your appointment goes ok on Friday, I’m getting more anxious the closer tomorrow gets, but I just want to know so I can plan ahead with hubby working away, big hugs and love to you and yours 💖💖

[simplyeve]

Hi Ladies

Sorry I haven't been as involved as I would have liked, unfortunately my 95 mil was taken into hospital on 6th May, diagnosed with an infected gallbladder and was doing ok but needed keyhole surgery to remove it, unfortunately whilst in hospital she had a fall and broke her hip, obviously she needed surgery and although she came through the surgery on the day, she developed a blood clot and she passed away a week ago today.  To say our family has been on a roller coaster this year is just the biggest understatement. 

Anyway long story short she lived in council accommodation which has to be emptied asap so given that I don't know how well I will be during my chemo and between trying to clear her belongings, contacting family, supporting my hubbie and helping arranging the funeral, my own issues have had to be put on the back burner.  However I was conscious that treatments and appointments were starting to take off this week so really wanted to say

@Trowster  good luck with your Onc appointment tomorrow 

@Louise65  glad you cardio was ok even though bit painful and good look with your bloods on the 9th and your 1st round on the 11th.

@Impatience good luck with your 1st treatment on the 11th too, did you decide which app to use?

@hopeful1974  seems like we might be twins in terms of treatment I haven't seen many ladies having TCHP recently and will be glad to have someone to share experiences with it was also great to hear your advice given your pre-surgery treatment,  hopefully I will be back online before the 15th so will wish you luck at that point.

@JessicaB I hope that your HER2 results are good when they come through, the waiting is the worst, I knew mine was positive from my first set of results, but the consultant would not confirm my treatment until after the results of both my ops were back so for me the worst part of all of this so far has been the waiting .

@Fairie do you have your first date yet?  Do let us know how you get on.

I have another busy week, clearing & cleaning, Funeral Thursday and Friday am off for my cardio and the lymphodema clinic in the afternoon, still don't have any headwear sorted and haven't got my nails done yet, but am hoping I can get those done whilst I recover from my first chemo.  Hope all goes well for everyone.  xxx

[Trowster]

Hi Louise, glad you’ve got your hats ready, I’m sure by December you might have a very short covering of hair, you might still feel a bit tired but not to tired for a good time out with a drink n a dance, you can always rest the next day, I hardly wore my wig last time, but did put it on for me works Xmas meal, n ended up taking it off because I was so hot, just wore it for the pics, try and relax and take time for yourself now before your next stage starts, I’m sure you will be anxious in the morning your treatment starts, I have my Onc app next Tuesday and I’m getting more anxious each day, wondering what my next phase is going to be, I think once we know what’s happening we cope better, we’ll do anyway, I like a good plan of action, have fun trying your hats out and maybe post a pic, I’m off to the hairdressers today, she’s decided to put pink streaks back in my hair like she did 13 yrs ago, lol

[Louise65]

Cardi all good although boy did it hurt as I have tender area where he decided to push I did get it checked as thought there was lump but its just breast tissue. 

My hats have arrived and it hit me I'm going to be bald. I don't fancy a wig but may change mind later on.y niece gets married at xmas and I aim to be well enough to be there and  have a dance. 

I know next Friday when I arrive at hospital for my 1st chemo I will be nervous but know the staff will be very supportive. 

Xx

[hopeful1974]

Hi @Trowster. Friends and a loving partner sound great. My husband, parents and friends have been invaluable in keeping me going during this time. I have had a couple of runs this week, 6 weeks post-mastectomy, which has given me a real boost. I don’t usually manage more than a short walk during chemo, but do try to do that as soon as I feel up to it as it really does help me mentally and physically. 

I had my mastectomy on 26/04 and start chemo on 15/06. I’m enjoying these two weeks before it starts, seeing lots of family and friends. I hope to continue to be able to see some people on my good days after chemo but know I won’t be able to do as much, so making the most of it now.

Hope you are all managing to enjoy this weather! Siân xxx

[Impatience]

Hi JessicaB

I had my surgery 26th April and had my oncology consult last Wednesday. So similar timeline to yourself.  Today I have my date for first chemo session (11/6 EC x 3 followed by T x 3). Like you I like to be prepared but it’s getting a balance between that and not making myself over anxious. I had grade 2 mixed cancer 3cm with 14 positive lymph nodes so I keep telling myself chemo is a good thing and what my body needs right now. 

I’ll take a look at the apps.  Take care everyone. X

[JessicaB]

Hi, here I am joining you lovely people!  I had a mastectomy on 28 April and have my first meeting with the oncology consultant on Monday (Well I did!  They are still waiting on HER2 results so its been put back another two weeks 😞 ). I have had lots of help and support so far but to be part of a group going through it will really help too. I am trying to find the balance between being prepared for what is to come (without scaring me) and just dealing with it (but worry doing that means missing out on advice/help by not educating myself enough).  The apps look good so I have downloaded two of them.  I already use one for peri-menopause and was going to use that, however this looks even better. Be kind to yourselves folks x

[Trowster]

Hi Hopeful

friends and a loving partner are my life line, while I’m waiting for my oncology appointment I’m taking every opportunity to get out for social bike rides with my friends, over the past 2 weeks I have cycled 200 miles n I’m feeling great and a bit guilty that I’m out cycling while signed on the sick,I have been very lucky to recover well after both operations, lumpectomy  axillary then a bit more breast tissue removed,  but I am building up my spirit and health ready for the next stage, I hope you making the most of this lovely weather today, I’ve relaxed in the garden and we’re having the first BBQ of the year,

[hopeful1974]

Hi @simplyeve, I didn’t use an app, but that sounds like a good idea. I will take a look at them. I just noted everything down in the Notes section of my phone. They really can manage most side effects either with other drugs or by reducing your doses so really don’t be afraid to let them know your side effects as soon as they happen. You don’t need to suffer unduly. I have always been someone who has tried not to use medication and was even averse to taking much paracetamol but this has now changed somewhat and I am very grateful for the drugs. Sometimes it can take a few days to work out which drugs work better for you, so that is another reason why the diary is helpful. 

You have reminded me that it is a good idea to paint our nails a dark colour on our type of chemo. I did it last time as well while on EC and whilst my nails did become very soft and brittle, I did not lose any. 

I have a wig which I tend to wear when going out and feel more comfy in one of my beanie hats when at home. As I have not had chemo since March, my hair has grown back enough so that I have quite good coverage again so am now not bothering to put anything on my head when around the house. I tried the cold cap but most of my hair fell out anyway so I ended up having a very short buzz cut. The cold cap works better with certain types of chemo and EC is one of those which affects the hair the most, so it may still be worth a try if any of you are thinking of trying it. I didn’t find it hard to tolerate. It felt very cold for the first 15 mins and then I didn’t really notice it. It does add a couple of hours to your treatment, though. I don’t think I’ll try it this time as I have so little hair to lose. 

Let me know if you have any questions. I have picked up a few tips along the way, such as keeping my hands and feet well moisturised and using natural products for washing and on my skin as it tends to become more sensitive. Pampering myself with nice products has become an enjoyable part of it and I particularly  like Jennifer Young products. 

One last recommendation is the book Ticking Off Breast Cancer which made me feel like all the things I was going through and feeling were completely normal. It does not go into all of the medical aspects of treatment (there is another book I found which is good for that) but more just describes the journey generally. It helped me a lot. 

Enough from me for now! I hope the weekend is good for you. Siân xxx

[hopeful1974]

Hi @Trowster it sounds like you have developed a good attitude. I would second you in saying how important good friends and family can be. I have accepted every offer of help I could, particularly of meals being brought over. That has been a godsend for me. Having a friend sit with me or go for a walk has helped me hugely during the past months, as it makes me feel like some part of my normal life is carrying on. 

I look forward to hearing your updates as we go through this together. Siân xxx

[simplyeve]

Hi Louise65

Good Luck with your cardio on the 1st.

I have been up and down alot this week, in particular stressing over my teeth delaying my treatment, but luckily all now sorted.  But I know that come the 15th I am going to be absolutely terrified.

I hope you have a lovely time celebrating with your daughter, I understand totally as my niece was supposed to get married on the 18th December last year, at the moment it has been re-scheduled for the same date this year.  For that reason I haven't yet organised any headwear, though I have had my hair cut short and my hairdresser will do "the shave" when I need it, they will also do my nails, as my Onc suggested a dark colour can be beneficial.  I am considering holding off on a wig and maybe adding the voucher supplied by the NHS to my wedding hat budget so I get a really good quality one I can wear at the wedding - hats don't really suit me anyway....so am going to get some turban syle headwear and see how I go with those.

Hope you manage to relax a bit over the weekend.  xx

[simplyeve]

Hi Trowster

Good to have you in the group.  Hope your appointment goes well on the 8th and the cycling challenge will help you with your wait.  Good that we have some lovely weather coming up this week.  

I hope we all get to support each other through the good and the bad too, don't think it would be so easy to do this without you all.  I am the sort of person who prefers to try and protect my family so sort of drip feed them info and although I have a couple of really supportive friends I don't want to overload them so being on here is extremely helpful for me as I can express my concerns and know that you will all understand.

Hope everyone has a good Bank Holiday Weekend and gets the chance to relax, I'm currently sipping on a nice glass of red wine, a special Bank Holiday Treat!

xx

[simplyeve]

Hi Siân

So glad to have you in the group, though obviously wish none of us needed to be here.  

I was diagnosed with grade 3 ER/PR/HER2+ IDC and at first ultrasound my tumour was recorded as 12.5mm and close to my nipple so I had WLE & SNB including removal of the nipple, unfortunately it was 42mm when removed a month later and I too had a positive sentinel node so had to have ANC surgery, had a further 2 positive nodes and extracapsular spread.

Thanks for the advice to keep a record of our side effects, I have had a look at a couple of the apps that were recommended by Mai 7 and think I might use one of those, did you use an app if so which one would you recommend or did you keep a paper record? It's also really positive to know that the side effects can be managed.

Good luck for the next round of your treatment.  Yvonne xx

[Trowster]

Hi All

it looks like I may be a fellow traveller, I took this train in 2008, diagnosed in July and mastectomy on 6th August, node clearance 2 weeks later then followed by Chemo and Radiotherapy, not nice at the time but doable and I’ve had 13 years cancer free since then, I had signed up for a trial so I was monitored for 10 years. it was a journey I wouldn’t book a repeat ticket for, but hey here I am again, I had a new unrelated cancer found on my routine mammogram in March, so lumpectomy on 29th March with axillary clearance, then a second op on 9th April as the margins still shown cancer cells, got my results on 21st April to be told all margins are now clear and I’m getting passed to Oncology with a recommendation for chemo because the cancer had spread to my nodes, I am waiting for my Phone Consult with the Oncologist on 8th June and hopefully I will find out when my next stage starts, for the moment I feel really good I have good movement but have developed some cording, but I’m getting out Cycling as much as I can and I’ve signed up for a 100 mile total challenge for June, but if my treatment isn’t starting till later in the month I might increase it to 250 or 300, I hope we all have a good journey and can support each other on good and not so good days, I hope you all have a good support group and friends as good as the ones I have, xx

[hopeful1974]

I should add that I am 46 years old and my cancer is ER+ and HER-2+. 

[hopeful1974]

Hi there, I’d like to join this group as like Yvonne, I am due to start TCHP on 15/06! I have already had 3 rounds of EC chemo from February to March, then I had a break for my surgery (mastectomy) during which they found 1 sentinel node to have cancer in. They did a full axillary node clearance and removed 17 nodes, none of which had cancer in thankfully. My tumour was found to be Grade 2 and 2.5cm. I also had a DCIS measuring 7.7cm. 

I am looking forward to sharing our experiences here and hopefully we can all help each other along. One tip from me, having had some chemo already is that there are drugs for pretty much every side effect. I found it very helpful to keep a diary of side effects and also to ring the oncology treatment hotline if your hospital has one whenever you have side effects as they can advise you and prescribe drugs to help. 

All the best to everyone. Siân xxx

[Louise65]

Hi Yvonne

I have my cardio on 1st and bloods on 9th. How are you feeling?

When the call came I was relieved but then felt very sick that its almost here. I'm seeing my daughter next weekend for her birthday as last year her 30th wasn't what we had planned. I've ordered a few hats in readiness for the hair loss and have booked an app before 2nd session for close shave. 

Definitely be good to chat with someone going through it same time xx

[simplyeve]

Hi Louise65

Seems like you will be starting your treatment just before me, I start on the 15th, had my dental check up as had broken a tooth and lost a filling in lockdown, but luckily was able to get fillings done so am all ready to go now.  I have my cardio appt on the 11th and my BT on the 14th, unfortunately I have to have my first treatment over 2 days as am having immunotherapy drugs as well. Hopefully we will be able to share experiences and help each other along the way.

Yvonne xx

[simplyeve]

Hi Fairie

I am in contact with another lady who is on her second time around and has her first oncology appt on the 8th June, hopefully she will join the group soon too.

In the meantime thanks for posting and I hope we can help each other along the way.

I start on TCHP on the 15th, and will be getting RT and Hormone therapy along the way so will be glad to listen to any tips you might have.

Yvonne xx

[simplyeve]

Hi Tara

Thanks so much for taking the time to give us such a positive response.  Although we all have different cancers and chemo treatments it is always helpful to have the support of people like yourself.

I hope I can deal with my treatment and be as proud of myself as you are this time next year too.

Thanks again

Yvonne xx

[Shi]

❤️ Please always ring your rapid response numbers even with no temperature, it is always best to keep your team aware of anything during chemo ❤️ step by step you will get through and you will 🤣🤣🤣😲😲😲🥳🥳 through this together 👭 strawberry blonde wrote mountain lion in hope and inspiration but of the threads I think it is. A good book that helped me was surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but helped me, she is a 2 x tnbc survivor. Ask away on here and everyone will 👭👭❤️❤️as much or as little as you need. 💕💕✨✨Shi xx

[Louise65]

Hi I start my chemo on 11th after being diagnosed triple negative. I had lumpectomy and SNLB luckily that is clear. 

[ttyler]

Hi Fairie,

lovely to meet and hear from you! I am sorry you have got cancer again, but feel happy that it appears to be contained in one place and has not spread. It must be such a relief.

 Well done on getting through your previous journey, you are a true warrior! I want you to know that I and other members are here for you this time to hold on to and support you.

 I don’t know what your experiences of treatment were last time, and can imagine that  you may have worries as you know a little more than others that have not been through the experience before of what to expect. I do hope that things go as well as they can for you and you don’t experience to many negative side effects.

 From my own personal experience the chemo was not too bad. I did feel extremely nauseous, but was never actually sick. I think this was to do with the fact that I asked for every anti sickness drug available. Don’t get me wrong I bloated and put on 2 stone from the steroids, which is taking its time to come off again now. Suppose this is a small price to pay for feeling not too poorly.

I don’t want to come across as a know it all as you have been through treatment before, but wanted to remind you that you don’t have to suffer and to ring your rapid response team with any difficulties you may be having so that you are able to feel as well as you possibly can.

 If you need support or have any questions I am always here.

 Hope you have a lovely evening!

❤️ Tara xxx

[Fairie]

Thank you Tara 

I am about to get in that train again. Last time was 14 years ago. ER positive and had mastectomy, chemo, radio therapy and 10 years of hormone treatment. This time I have triple negative and start chemo in next couple of weeks.. stage 1. No spread and nodes ‘ look normal’ 

cannot believe I’m here again. Nervous again and dreading side effects 🤦‍♀️

[ttyler]

Hello June chemo starters! My name is Tara and I was diagnosed with triple negative breast cancer in March last year at the age of 36. I had surgery first followed by  6 rounds of fec-t chemo from the 11th June to 24th September. I can’t believe how quickly the time has gone and how differently I feel now compared to this time last year. Mainly relieved, but proud of where I am and what I have achieved. I remember feeling so anxious and worried about chemo, even threatening to not go in to my first one. If it wasn’t for my husband abandoning me in the hospital loading bay and being met by a lovely nurse on the chemo from the chemo unit that had been diagnosed with the same type of breast cancer 10 years earlier and survived, I am not sure I would have made it up to the ward!

 I am not a doctor and are not medically trained, but I have been where you are now and have come out the other side. If you need to share and concerns, worries need reassurance or would like to know my experiences on anything at all, then please do ask. 

 You are about to get on a train that will go through a tunnel and come out the other side. Hold on tight to one another and support each other through. You will get there!

 Lots of love ❤️ Tara xxx

[simplyeve]

@Mai7 

Just want to say thanks for setting up the June group and including all the links.  I think the apps could be very useful.

xx

[simplyeve]

Hi Em_Duck

I'm sorry we have to meet for the first time in these circumstances but I too am hoping to start my treatment in June, I was diagnosed on 1 March and had WLE & SNB in March with ANC in April.  I had my first Oncology meeting on 19th May and am due to start treatment on 15th June, but unfortunately have to have dental treatment first, so may be a little later starting.  I will be having 6 cycles of TCHP initially.  I am a young at heart 62, just wanted to let you know there are at least two of us going through this together.

Congratulations in doing 78 of the 100 miles in May.  Unfortunately in that sense I am not so young at heart🙄.  I am sure there will be a few more of us to share experience with soon too.  xx

[Em_duck]

Hi there, 

I have my first oncology appt on 3rd June so should be starting chemotherapy shortly afterwards. I’m 37 and was diagnosed in Feb. Had a lumpectomy, followed by axillary clearance as it was found in my sentinel node. I also made the decision to complete Breast Cancer Now’s 100 miles in May while I was waiting for oncology - 78 miles down! Xx

[Mai7]

Hi 

This thread is for anyone due to start chemotherapy this month.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

https://www.nhs.uk/apps-library/owise-breast-cancer/

https://www.careology.health/

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

If you’re new to the forum, here’s the “Getting Started” advice:

 https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted