67.8K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

July 2021 Chemo Starters

180 REPLIES 180
Corina
Member

Re: July 2021 Chemo Starters

@Kaisa Hope you’re recovering well from the operation and I hope everything is going to be ok with the results. 

@Jennet It must be a relief to know you have your last chemo next week hope all goes well. 
I had my 4th Taxol last week, 8 more to go. I’m tolerating it better than I did the EC but that may change. I hear the effects of taxol is accumulative, the nurses told me I will more likely experience the neuropathy on the 5th/6th cycle. They said if it turns out to be too much to tolerate they might have to reduce the dose. I’m always nervous about that in case lower dose will reduce the impact of the treatment. 
I’ve been feeling a bit low these past few days, everything has been piling up with the treatment and my smell disorder which doesn’t seem to be improving and the horrible hot flushes, it all gets too much. Sometimes I fear if everything will go back to normal again and if I will feel normal again.  
Anyway I hope everyone’s doing well and keeping safe xx

Kaisa
Member

Re: July 2021 Chemo Starters

Thank you @Jennet x

First week has passed and today I had my first seroma drainage - 370mls! Nurse happy with my wound and next week she's going to remove the dressing and drain more seroma if required. 

I get the histology results on Nov 5th. 

Take care x

Jennet
Member

Re: July 2021 Chemo Starters

Hope you’re recovering well from the operation @Kaisa 

rest well and be gentle on yourself when you can - thinking of you 

Jennet
Member

Re: July 2021 Chemo Starters

My experience is the tiredness is cumulative and I’m not bouncing back from docetaxel in the way I did with earlier cycles. I’m on day 15 of cycle 5, the second of docetaxel and I have the sixth and last one next week. Still having upset tummy and diarrhoea…

…but at least an end in sight. Hope everyone is coping ok. 

Kaisa
Member

Re: July 2021 Chemo Starters

Hi @SeaUrchin , not sure what he meant by squishy, my brain was really not in gear when he spoke to me after the op yesterday and today I forgot to ask. Will ask the BCN when she phones next week. I am home now and shattered, 2.5hr drive from hospital. Too tired to sleep but I'm in bed. Painkillers working, bruising showing more and more. 

I took cocodamol for my pain after the filgrastin inj - awful bone pain! 

Take care x

 

SeaUrchin
Member

Re: July 2021 Chemo Starters

 

Wishing you a speedy recovery @Kaisa. You just had a life-changing operation to get better and have a normal (as normal as it gets) life. I hope you won't get too much discomfort during your recovery. Good to hear everything is fine. What did your surgeon mean about the squishy sentinel node? 

I had my 5th chemo session and 2nd Docetaxel regime today. There is one more to go. Last time, I had a list of side effects including joints, bones and muscle pain. I'm not sure if it was due to Pelgraz injection or the side effects of Docetaxel. I had to use co-codamol to ease the pain as it was rather painful. I also had eczema all over my hands. My BCN recommended using Udderly Smooth moisturizing cream (never heard of it before) which is helping.  The good news is, I don't get nauseous or sick with Docetaxel.

I have reduced my working hours as I'm getting tired and each time it is taking me longer to recover. The BCN said it is the accumulative effect of chemo.

I hope you are all managing side effects and keeping positive. Take care everyone. Please hang in there. There is light at the end of the tunnel 😘

Kaisa
Member

Re: July 2021 Chemo Starters

Don't know how to start a new post on this so replying to my own thread.

I've had my simple mastectomy today - surgery took longer than expected but the swelling from my biopsies had grown quite a bit and my arm kept knocking in to it and it was getting really sore. Not seen scar in a mirror yet - no mirror in the bathroom here (!) but I can feel it extends from behind armpit to up middle of chest. One sentinel node was "squishy" my lovely surgeon said but all else looked fine. Fingers crossed! Thankfully no sickness but had fasted since the night before and only came out of theatre at 6pm so I was hungry! Drain is in the way but easy to carry when I pop to the loo. 

Feels odd not having my boob there, tender and a bit tight but will start exercises once they show me what to do and also load up on painkillers. It's past 11pm now and hopefully I'll  be able to sleep but they're doing 2hrly obs on me so ... I'll zonk out when I get home, hopefully tomorrow.

Take care everyone, my travel companions on our unwanted and unexpected journey xx

Corina
Member

Re: July 2021 Chemo Starters

Hello @sharlea 

I’m sorry to hear about the changes in your treatment. It must have been difficult for you and your doctors to make the decision but as you said if the chemo made you feel more ill then that would defeat the object. 
Have they said if there are other options in addition to radiotherapy? 
I’m in my weekly taxol now and although I may have not experienced any severe side effects I am apprehensive about the accumulative effects in coming weeks. 
I hope you are feeling better and I wish you all the best with the rest of your treatment and recovery x

sharlea
Member

Re: July 2021 Chemo Starters

Hello to everyone on July chemo starters,

Had a face to face with my oncologist on Wednesday, and wonderful news, no more chemo! I’d been admitted to hospital for a few days after a fever, faint and start of fitting, have peripheral neuropathy in my feet and fingertips, utterly fatigued, sitting on sofa for most of the last cycle, now feeling a great sense of relief. She said the risks of another cycle outweigh the benefits. And my regime was really tough, so well done to have got this far.

I was going for my fifth TC this afternoon, will celebrate with a fruit smoothie instead! Next is the portacath removal, probably next week. Then a few weeks to recover a bit, then radiotherapy. Was told to expect about six months to recover fully from the chemo.

Sending everyone still having cycles all my best wishes, sharlea 

 

Corina
Member

Re: July 2021 Chemo Starters

Hi @katenonip 

Hope you're well and recovering from your chemo. I'm pleased to say that taxol went well and didn't make me feel sick. They gave me anti-histamine as pre-med which made me very drowsy and spaced out for the duration and rest of the day. But after sleeping it off, I was ok and managed to have dinner and stay up a bit to watch tv etc which was a nice change from the EC round. My cardiac test results were all fine for now, but I'm not any closer to knowing what causes the palpitations. I give up! 

I just feel a bit down emotionally, dreading the long autumn and winter months. I can't wait for all this to be over but I also think about post chemo and how soon I can regain my energy and strength. I shouldn't complain though I know, everyone is having a hard time some more than others. I keep praying for all of us to reach the end of our treatment and start feeling happy again. 🙂

I hope you manage to get your jabs booked. I think you definitely have some immunity from having had the Covid, that's what I've heard anyway. 

Hope you and everyone here are having a restful and relaxing weekend x

katenonip
Member

Re: July 2021 Chemo Starters

Hi @Corina 

Sorry for the slow reply, I gad chemo yesterday and it just feels like a busy week with work and appoitments. I am still in my dressing down 🙂

How are you feeling on your taxol? I am glad you've got your flu jab. I have been battling with 119 and my GP. So we are on the seriously vulnerable list and you should be allowed the 3rd dose 8 weeks after the second jab.  I am trying to book mine but it has to be within 72 hours of next chemo so no spaces as yet. I also ordered an antibody test just to put my mind at ease to see if I had any immunity from covid or not.

Have you heard back regarding your tests?

I hope everyone else is doing well this week too. Sending love xx

Kaisa
Member

Re: July 2021 Chemo Starters

Hi

Its been quiet amongst us July starters. Just wondering how everyone is getting on?

I've had 3 rounds of EC (last one on sept 1st), refused the the next 3 with another drug (I had valid reasons) and am now booked in for a simple mastectomy on the 12th October. I wanted a mastectomy before chemo but the protocol here seems to be chemo first to shrink the tumour, I felt I had no choice in the matter.

The chemo side-effects have waned a bit but I still have stingy eyes (use gel eyedrops), zitty inflamed face and am tired. Fed up of shielding, long to do the weekly shop and meet up with friends at the café but then again I don't want to pick up a bug before my op.

Take care and thinking of my fellow travellers on this unwanted journey.

Corina
Member

Re: July 2021 Chemo Starters

Hi @katenonip 

I think I will be given those meds but I’m not sure about the dose yet. My oncologist said the taxol shouldn’t make me feel as sick but there are other side effects that I’m worried about like the numbness and tingling in hands and feet. I just hope it’s not as bad as it’s reported. 
I should get the result of my cardiac tests soon, hopefully there’s nothing serious and palpitations are linked to chemo. 
Re booster jab, we should be getting ours 6 months after the second jab. I had my flu jab on Saturday I was told it was absolutely ok to get one. I think your surgery should contact you to book the jab. 
I hope your treatment goes well this week. I know what you mean about the private insurance. I’m grateful for having my treatment done via insurance. Having read some of the posts, it looks as though it can be a bit challenging to go via NHS. Having said that I think it’s right for patients to make sure they are getting the right care and keep checking that the staff are providing them with the right meds etc. 
I keep my fingers crossed for everyone and pray we all complete our treatments successfully. 

take care x

katenonip
Member

Re: July 2021 Chemo Starters

Hi @Corina  

I really hope this goes well. I hope it is easier than the EC for you. Fingers crossed.  Have they reduced your steroids and anti sickness for the next cycle or are they the same?  Have you heard back from your tests as yet?  

Well I am very confused about the whole covid booster as I don't think we fall in the 1% of people that were eligible.  I called 119 for my booster jab and I won't be due mine until 3rd December as my second jab was 3rd June.  I am hopeful that this means that I still have some immunity to covid.  I also need to book my flu jab but I am unsure at what stage through the cycle that we book this for.  Does anyone know.  I am seeing my oncologist for the first time on Thursday so can always check with her then.  Round 5 on Thursday!! Another Zolodronic acid and my second herceptin injection so a little worried that next weekend might be a struggle looking after my little one on my own. My partner is back ion weekends for a few weeks so it's just us two all weekend.  

I often rant at him as to why he never added me to his BUPA health insurance but ce la vie.  The NHS staff around Oxfordshire have been really outstanding so I am grateful for that.

I hope everyone is having a good Sunday 🙂

Jennet
Member

Re: July 2021 Chemo Starters

Oh @sharlea that’s not okay. It really isn’t. This whole thing is difficult enough without the people caring for us making it worse. Nursing is a really tough job, lord knows I couldn’t do it and I’ve been really lucky so far with the nurses looking after me. A big ticky box form sounds very sensible, even if you shouldn’t have to do that. Checklists are well evidenced in health care for improving outcomes and avoiding errors. Hope your chemo is going okay xx

Karen Mc
Member

Re: July 2021 Chemo Starters

Must have been tempting fate as for the first time on Wed I asked the nurse as he she was sorting out the meds at the end, shall I put the injection in the fridge?

After a mad panic and checking all the picking lists, her fridge in the car etc, it hadn’t been sent! No problem she rang head office to have it couriered for the next day. Traffic problems on M5 meant it arrived at my house at 10pm.

 

sharlea
Member

Re: July 2021 Chemo Starters

Hi Jennet,

Your nurses sound brilliant. Unfortunatey, sometimes our chemo nurses ask patients what meds they need to take home and I feel that I always have to be so on the ball, as it were, to ensure I have everything. When they told me I could go, I just didn't think about them not having given me the injections (that foggy old chemo brain doesn't help). so next cycle, will be taking in a large chart, with med list on, and a ticky box to tick, with big note at bottom, not to leave without those ticky boxes done.

Unfortunately, there are nurses on my chemo ward who feel they are extremely overworked, and also very resentful of being on the lowest band, and happy to have conversations about this in front pf patients.

Take care, sharlea

sharlea
Member

Re: July 2021 Chemo Starters

Thank you Kaisa,

Yes, you are so right, we do seem to be supersensitive going through chemo, it really does take a physical and emotional toll. What might seem a simple oversight to a nurse, felt like a a very big thing to me, not really due to the distance travelling, but that it was yet another thing that had gone wrong. Take care, sharlea

Kaisa
Member

Re: July 2021 Chemo Starters

Thank you @Corina, I will put these on hubby's shopping list. He and son have to do the shopping (I am shielding before my mastectomy) - they hate it 😂

Corina
Member

Re: July 2021 Chemo Starters

Hi @Kaisa 

I’ve always used deep cleaning lotion from Clean&Clear brand to manage blemishes. The Neutrogena facial wash is also good.
Every night I use a cotton pad to clean my face with the lotion and washed my face with the Neutrogena.
Hope things will improve soon 😊  

Corina
Member

Re: July 2021 Chemo Starters

Hi @katenonip 

Thanks for your message. I haven’t had it yet, will start next week. I’m quite apprehensive as I don’t know what to expect. With EC I knew the routine and I was ready for it. I just hope it doesn’t make me feel as sick. 
I’m still struggling with some palpitations for which I’ve seen a cardiologist and having some tests done so will have to wait and see. And of course my smell and taste disorder and tinnitus continue. I wonder if tinnitus is also part of long Covid symptoms. Who knows! 
Enough about me, how are you? I hope you’re feeling better and managing your symptoms. 
I guess this applies to everyone here but I have been put into the high risk category by NHS. I wonder if this means we are soon asked for booster Covid jab? 
Anyway I hope everyone is doing well. I keep everyone in my prayers xx

katenonip
Member

Re: July 2021 Chemo Starters

HI @Corina 

 

How are you doing after the round of Taxcel, I know you were worried about the side effects being worse?

I hope you and everyone else are doing ok this week.

love Kate

Jennet
Member

Re: July 2021 Chemo Starters

Hi @sharlea I just wanted to respond to your post about nurses forgetting the injections. Of course you’re upset about it. It seems as though they weren’t being methodical and they should have double checked you’d got all your meds before you left. Each time I’ve been for chemo the nurses have checked the meds for each patient in pairs at the computer, then gone through it all with me, and I’ve asked for a print out of my bloods and meds which they’re happy to give, so I go through it with my husband when we’re home.

So it might be worth asking for a print out. Hope you’re coping well with the chemo snd your feet aren’t too sore x

Karen Mc
Member

Re: July 2021 Chemo Starters

My injection 6mg Neulasta has to be done at least 24 hours after my chemo so the chemo nurses leave in my fridge and I just have to take out of fridge half an hour before they arrive the next day.

I have  been following all your posts but haven’t worked out how to make my own post!

I have my 4/6 FEC cycle this Wed.

I’m lucky that my husband gets Bupa through his work so all my treatment is done at home , chemo nurses visit once a week on weeks 2/3 and three times on treatment week (bloods, chemo, injection)

I had a 30mm grade 2 ER+ HER2 - tumour removed, with an Onco test of 31 the oncologist recommended adjuvant chemotherapy to reduce the risk of the cancer coming back.

I feel ill (like a hangover without the alcohol 🤣) for about 5 days per cycle. Dizzy, breathless, metallic taste etc but the rest of the time I can cope with. Lost my hair halfway between cycles 2/3. Have a wig, variety of hats but mostly just embrace it. My head feels so hot with anything on it.

having flu jab tomorrow and waiting to hear from consultant about booster or 3rd dose of Covid vaccine.

Kaisa
Member

Re: July 2021 Chemo Starters

Hi @sharlea - that happened to me too! Nurse did mention injections on my first session and forgot to give me them at the end (they were in the fridge). My husband had to go back for them but luckily we only live 3miles away. 

But however far or near we live the hospital it is still an inconvenience! The next 2 times I reminded the nurse about the injections. And I do understand how you felt - we're supersensitive going through chemo and I too felt annoyed about their error - specially when everything was new to me.

I hope your ointments help your feet.

Take care x

 

sharlea
Member

Re: July 2021 Chemo Starters

Hello Corina and everyone else on our monthly thread,

I hope you’re all doing as well as can be, considering all were going through.

I had my fourth round of Docetaxol and Cyclophosphamide yesterday afternoon, hoping, just hoping that it might be my last, but no, the regime is still scheduled to six cycles. However, due to me promptly reporting tingling, numb fingertips and feet, my oncologist had reduced the Docetaxol by 20%.

Also, they’re concerned about my feet especially as lots of skin coming off and cracking in between toes, potential for infection, plus drying skin on hands and legs. Have been prescribed two types of ointment to help. Told to use fragrance free emollient soap free body wash.

However, what upset me most was that, despite asking twice. the nurses forgot to give me my filgrastim daily injections. Yes, they were a bit behind, and my appointment time of 2pm didn’t start till 2.45. But, by 6pm, when they said I could go, everything was done, I was just too tired to double check my meds. So ... had to make nearly a two hour round trip to the hospital this morning, to pick up the injections which were still in the ward fridge. I am lucky to have a supportive partner who drives me to all my appointments, but even he was upset.

It is difficult for us going through our treatments and it takes its toll on our supportive loved ones too. I’m finding it difficult to deal with how such a thoughtless oversight by trained nurses can have such an impact, and it makes me think that I’m certainly not being the only patient who has been made to feel like this.

Take care and best wishes to all, xx

 

Kaisa
Member

Re: July 2021 Chemo Starters

Zits! Pimples! Yellow-heads! Itchy! Red rashy face!

2 weeks after my 3rd EC it started and I look awful - worse than in my teens 45odd years ago! 

Any advice on soothing cooling creams? I usually use MCC or L'Oréal stuff but I think this needs something more. 

Help!

Kaisa
Member

Re: July 2021 Chemo Starters

Thank you for your reply @Jennet .

I hope your side effects are manageable. My legs were aching on the filgrastin and I rubbed them with pain slayer onitment which helped, along with over the counter painkillers.

My chemo nurses thought I was coping well plus my consultant (only spoken to him 3 times) so they probably pass on info between them on our notes!  No one has mentioned MRI for me but that may happen yet pending on my histology results.

Take care x

Jennet
Member

Re: July 2021 Chemo Starters

Hi @Kaisa you're right, it's good to have support from 'fellow travellers' and to know we're not alone, although much better if none of us were on this journey! Wishing you well with your next treatment and surgery. I started the docetaxel, along with Pertuzumab and Trastuzumab injection on Tuesday. Starting to feel the effects now - aching tiredness, and sickness (which I didn't really have through 3 rounds of EC). Two more cycles of this and then surgery - mastectomy and lymph node removal. My cancer is ER+ PR+ and Her2+.

I have a lovely oncologist who told me I was doing brilliantly at my last appointment. Quite how she knows that I don't know, as I haven't had a scan since I started treatment. I am due an MRI after round 5 of chemo so we will see then I guess. I would like to get it all removed but apparently this is the best course of treatment for me right now. My surgeon is a little gruff - she is a specialist in reconstruction but at the moment I'm not thinking that far ahead. Ah well, hope all goes well for you x

Corina
Member

Re: July 2021 Chemo Starters

Hi Kate

Thanks for your message. I’m getting Paclitaxel, taxol for short. I was just reading about it, I think it’s slightly different from Docetaxel. I’m supposed to get it once a week for 12 weeks. Did you get your treatment every 3 weeks? 
Some of the side effects are same as EC but the nurses told me it’s not supposed to make me as sick as the EC did. That’s what I’m hoping for anyway. But I remember my Oncologist saying the EC would get easier on the 2nd and 3rd cycle and that was far from the reality. 
Anyway I hope it won’t be too bad 🙏🏻
Thanks again for your reply 😊 

katenonip
Member

Re: July 2021 Chemo Starters

Hi @Kaisa 

Nice to hear from you.  I hope everything goes well with your mastectomy. My oncologist changed halfway through and I found the same as you.  Luckily there are many other members of the support team that are so lovely and helpful. Sending you all the best.

Kate

katenonip
Member

Re: July 2021 Chemo Starters

Hi @Corina 

Lovely to hear from you, sorry to hear that you have been feeling rough.  I hope the lack of news about your blood test means that there is nothing to report.  Do you mean Docetaxel?  I had 3 rounds EC and 4 rounds of Docetaxel.  I was so worried about starting it as I was under the impression that I would feel so much worse.  My partner has called me  a fraud as I feel ok.  The anti sickness and steroids were also halved which definitely helped as the steroids made me feel so awful.  Let me know on the Docetaxel and I will drop you some more info rather than waffling on 🙂

I hope everyone is doing ok this evening.

Kate

Kaisa
Member

Re: July 2021 Chemo Starters

Hi, glad I found this thread! It's nice to go through chemo with others but at the same time so sad that we have to. I have a mixed cell metaplastic tumour HER2 positive, the cyst was 5cm when I finally went to my GP. Reason for leaving it late is in another post I started "mixed feelings".

I started EC at the end of July, have had the 3 prescribed rounds, last one 2 weeks ago. The side effects have been variable - bone pain from the Filgrastim was awful! I have fibromyalgia too and those symptoms worsened too.

I was supposed to start 3 rounds of Docetaxel on weds but due to various reasons I've declined. Instead my mastectomy has been brought forward and getting that done Oct 14th. After that the histology will determine my next treatments. My consultant is a lovely man but my oncologist sounds strict and cold (we've only had phone contact), the BCN has been adorable!

Anyways nice to meet you as we venture on this unwanted journey together.  

 

 

Corina
Member

Re: July 2021 Chemo Starters

Hello @sharlea and @katenonip and everyone 

I hope you’re all well. I had my 3rd cycle of EC drug last week. By far this one was the toughest round; sickness, fatigue, palpitations which now have turned to pulsating tinnitus. Didn’t sleep a wink Sunday night and had to go back to have some more blood test done on Monday. They didn’t call me with results yet so maybe it wasn’t anything too bad to report. But I think low blood count has something to do with it.
I’m feeling a bit better but the palpitations and tinnitus are really annoying and I still feel quite tired during the day. 

In two weeks time I will start the weekly Tacxol. I’m really apprehensive about this one. I’ve been told it’s not as bad as EC and it shouldn’t make us too sick. I wondered if anyone here has had it and what their experience has been. 
Hope everything’s ok with everyone xx

sharlea
Member

Re: July 2021 Chemo Starters

Hello Corina,

Sorry to hear about your tinnitus and tase changes. I am waiting for my taste buds to change in a couple of days, seems to be just about a week after the chemo, when fruit tastes bitter, milk is too nasty, water tastes dry (how on Earth) and toast just sucks the moisture out of my mouth. I find spaghetti hoops are good, slightly sweet, moist and bland. Nursery food, I know, but my oncologist said to eat whatever able to whenever possible.

Take care

Corina
Member

Re: July 2021 Chemo Starters

Thank you for the tips on scalp products, very useful. My skin seems to have darkened a bit and I have some discolouration on my nails. They look awful but I’m hoping all of these side effects stop once we finish chemo. 
I’m sorry to hear you are suffering from vertigo. I once had a very bad case of that which I had to seek treatment. They did an Epley manoeuvre to resolve my vertigo at the time. It’s a movement in the neck which needs to be done by an specialist. Since then I’ve been having on and off episodes but not as severe, so I know how you’re feeling. Try to raise your pillow in bed and move your head slowly. 
Hope you feel better soon and get some relief xx

Corina
Member

Re: July 2021 Chemo Starters

Thanks, unfortunately can’t take anything for tinnitus. I’m going to try acupuncture and I’ve also got an appointment with a specialist to see what they say. I can even hear my pulse through my affected ear, it’s really annoying. 
I’m glad to hear your palpitations are resolved. Haven’t touched the wine since my smell and taste disorder which is long Covid, taste is like anything but wine and the chemo has made things worse!
I don’t know if everyone else's smell and taste have been affected by chemo? Even fresh water in a glass smells horrid to me. It’s never ending.. 

So I guess it’s just a matter of time we lose the rest of whatever hair that’s left as we go through different cycles. ☹️

Take care xx

katenonip
Member

Re: July 2021 Chemo Starters

Hi Corina

I am sorry to hear about the addition of the tinnitus, so horrid, can you take anything to help?  I am pleased to say the palpitations have calmed for me so think they relate to the steroids.  The sleep has improved a little especially from the first week.  I know they say avoid alcohol but last night I had two glasses of red and slept well until 5am. Might try that again 🙂

@DAB72 I have been using argan oil on my scalp as it is quite natural.  Coconut oil or olive oil can help too.  

I was told if the EC didn't get all my hair then the bloomin Docetaxel will so I am clinging onto those brows and lashes for dear life.

I hope everyone is doing ok xxx

katenonip
Member

Re: July 2021 Chemo Starters

Hi @DAB72 

How did Friday go?  I am hoping you are feeling ok. Did you make the graduation yesterday?

I had another buzz cut this morning just to even up the growth in sum areas versus the balding in other areas.  My brows and lashes are also hanging in there at the moment.  My legs are like that too.  Armpits nice and smooth though.  

My friend brought me round some difflam, i checked the ingredients and they are the same as the hospital gave me for any mouth ulcers so happy to gargle with that.  Seems the sore throat is very much a side effect so I will stop with the crazy lateral flow testing checking for covid.  It is so good that your hospital is testing you.  I just have to prove a negative lateral flow.  

I think the steroids for the EC are 6 in the morning then 3 x tablets morning and lunch for 3 days.  I have to start taking them the day before hand when I start the Docetaxel (sorry still can't spell it).  Are you on meds for the heartburn? 

I hope you are well and sending love x

katenonip
Member

Re: July 2021 Chemo Starters

Hi @sharlea 

I am so sorry this is your second bout, over how many years?  This is my worst fear and scares the hell out of me.  It sounds like you are a super warrior and by no means a wimp!! No more of that thinking ok.  I am glad you are on the strong meds, like they say short term pain for long term gain.  It sounds like you have a great oncologist too.  Sending lots of love xx Kate

sharlea
Member

Re: July 2021 Chemo Starters

Hi DAB72,

Thanks for your kind message and get well thoughts. I hope you are keeping well with your treatment, and things are going as smoothly as possible.

My chemo eventually got going on Friday, after the nursing team and on duty oncologist initially unwilling to start. This was due to a swelling in my neck, where the portacath insertion point goes into the jugular vein. After the nurses were able to get some bloods out and give the port line a good flush, the chemo got going. I was later given a blood thinning heparin injection in the tummy and returned for an ultrasound scan first thing Saturday morning, thankfully no clots in my neck or arm, just my body not really liking the portacath, despite it being the only option for my chemo, due to bilateral.

The pains are in my lower limbs, just one of the side effects of the chemo that seems to get to me. Not having pain in back or hips from the injections, thankfully.

Big hug, xx

DAB72
Member

Re: July 2021 Chemo Starters

Hi @Corina , 

sorry to hear about your palpitations and the  tinnitus, that must be very frustrating. I had the palpitations on and off for a few days but they went away. Have your medical team suggested anything for either problem, or your GP? Perhaps some beta blockers would help if you could take them?? I don’t  know much about tinnitus and whether there are meds you can take for that but I had positional vertigo back in April which just lasted a couple of weeks ( prior to treatments and never had it before) and that came back about a month ago and was much worse at treatment time. It’s a little better now but hasn’t gone away and as it’s related to the ear canal, I wonder if chemo does affect the ears in some way?

re scalp treatment; I haven’t really used very much as the TC chemo seems to have given me spots; I feel like an acne ridden teenager during week 1 of cycle. Or maybe it’s hormonal due to meds affecting menstrual cycle. In any case my scalp has also been a bit spotty so didn’t want to put on creams and anything that might block pores further. I have been using Simple shampoo and conditioner ( as I still have a little hair) and that seems to help moisturise a bit. Simple also do a light facial moisturiser which I read can be suitable for chemo scalp. I only use it on my face sometimes, in place of my normal moisturiser, but might be worth trying as it’s very cheap so not a major expense if it turns out to be no good. 
let me know if you try it or if you find something good to use. 

wishing you well for your next treatment and hope this week is a bit more ‘normal’ before starting all over again. Take care 🤗 xx

Corina
Member

Re: July 2021 Chemo Starters

Hi Katenonip

Hope you’re feeling better. My palpitations are still there but not as bad as the Chemo week. For all I know they might be part of my menopause symptoms considering I haven’t had any steroids for a week now. Another problem I have is tinnitus, I’ve had it for a few months but it seems to have got worse. It’s really annoying and something I could do without. I find all of this quite overwhelming at times but nothing I can do about it atm.

How’s your sleep, hope it’s getting better. 

@DAB72 I’m like you in terms of hair, I shaved my hair just before the second cycle of EC and the hair in my armpits and legs have stopped growing but still holding on to my brows and eyelashes 😊 I wonder if they’ll come off by the third cycle which is just over a week away! Do you or anyone here use any product for your scalp? I think my scalp is quite dry. I’ve seen a few products recommended by some cancer group but I’m not sure which ones are the better. 
Hope everyone’s doing ok xx 

DAB72
Member

Re: July 2021 Chemo Starters

Hi @sharlea , sorry to hear about the extra sessions but see what the oncologist says after round 4, you never know 🙂 🤗

I hope round 3 went well on Friday and that you are doing ok. Please let us know, when you feel up to it. If your extra meds are working as planned hopefully it won’t be so bad this time  🤞. I think you said the joint pain is a lot to do with the injections, is that right? I wonder if you really need them? Might be worth checking with your oncologist as I haven’t had to do them and my bloods were pretty much identical to pretreatment,  pre 2nd round. I suspect this is why I have avoided such bad side effects regarding bone pains. 
Sending you a big hug and lots of get well thoughts 💐 xxx

 

DAB72
Member

Re: July 2021 Chemo Starters

Hi @katenonip, so good to hear the Look good feel better session went well and a bonus to get some freebies. So far my eye brows and lashes don’t seem to have really been affected and although my super short buzzed hair is thinning I still have a fine fuzz all over. Wondering if this is it or whether the final 2 chemo sessions will result in the shiny head and brow/lash fallout. Funny my armpits are totally hair free but the legs are still a bit stubbly which is a shame 😂

sorry to hear your throat is so bad. Have you tried gargling salty water? I was recommended to do that by my chemo nurse even before my mouth becomes sore from treatment, just to help prevent ulcers and infections. 
How many steroids do you take? I have then for 3 days (1day before, on day of treatment and 1 day after) but like you seem to be hungry all the time and I’m definitely not eating the healthiest of snacks!! I do have to be a bit careful though as have become very prone to heartburn since treatment started. 
Sorry , I’ve lost track, but when is your next cycle? Mines on Friday so bloods and COVID test on Tuesday. My daughter has her postponed graduation from last year,  on Saturday so praying I will feel well enough to go. Last cycle ( unlike the first one) I was ok until the Sunday so 🤞

Wishing you a good week and hope you’re feeling much better. Take care xx

sharlea
Member

Re: July 2021 Chemo Starters

Hello katenonip,

Sorry to hear they have added another ound, but it is good they are a reduced dose.

My oncologist has no intention of reducing the doe at present, but giving me plenty of drugs to combat the side effects. She did say that she would review the treatment after the fourth dose, which is an absolute minimum. If the side effect meds continue to help, best to continue, but carefully consider weighing up the benefits of the chemo 5 and 6 versus my ability to tolerate them. She also told me the TC regime was very tough and I was getting short term pain for long term gain. (This is my second bout of breast cancer, new primaries, not secondaries, hence the tough treatment I guess.)

The liquid morphine was given to help with the very painful musculoskeletal pain I had after the first round of Docetaxol and Cyclophosphamide. My lower limbs had me in tears for a few nights, started off tingling, then like pins and needles before feeling like a hard and nasty brutal massage of my calves and ankle stabs - along with feeling like a bad case of flu type aches in myt shoulders. I was told the morphine would be far better than codeine, faster acting and a 2.5ml spoonful equivalent to a 30mg dose of codeine, should also help with getting a good night's sleep. Regular paracetamol didn't help really. This was my reaction though, and it seems that not everyone gets pain. I was anxious about this and felt like a right wimp, but my oncologist put me right on that, not a wimp at all, and natural to feel anxious, but better to feel able to get through the treatment.

Was given plenty of meds to take home to help with DC side effects, including Dexamethasone (steroids to help the immune system), Ondansetron (anti-sickness pills) and other anti sickness pills for as and when (which I didn't need). I am sure your oncologist will do all they can to help with any side effects. They are trying to make sure it is manageable, that the chemo does its job without it cauing us too much discomfort.

Hope this helps, I really do try not to get anxious, easier said than done, take care, xx

katenonip
Member

Re: July 2021 Chemo Starters

Morning,

I am on 3 rounds of EC then 4 rounds of DC. It was supposed to be 3 and 3 but last week they added a round but have now said that the 4 rounds of DC will be 3/4 doses rather than 100% doses which might help me tolerate it a bit more.  You could ask if they are planning on reducing the doses over the 6 rounds for you.  My oncologist said that they started me on the max dose and can always reduce it towards the end.  I suppose we just have to trust what they tell us. May I ask about the liquid morphine? Sorry if I have missed this previously. What causes the pain for the morphine?  I am anxious as my next round will be all new, Herceptin, DC and Zolodronic acid. I am scared about the different side effects of the next round. 

I felt like that on round 2, I sat crying thinking how the hell am I going to get to  round 7.  I have a few found respect to anybody that has been through chemo.  We will get through, just take one day at a time.  

Sending love and hugs xx

katenonip
Member

Re: July 2021 Chemo Starters

Hi @DAB72 I don't know if it helps but I know a few people who have changed their Tamoxifen type, as in from the manufacturer as silly things like them being sugar coated capsules etc has effected people and whether to take in the morning or nighttime.  I hope you get on well at your appointment.  There is so much to listen to and take it that you just feel like you live in the moment of treatment.  People were talking about their ops yesterday and I now can't even remember the size of the tumour that they removed. It is weird, maybe it is a safety thing built in to our brains so that we can cope at one stage at a time.  I read yesterday that eating foods like soya is supposed to help.  I think I would need to ask a professional as I did pick up a leaflet yesterday on menopause symptoms so I need to see what might help. I think all HRT is not allowed.  We are literally going cold turkey.  The next time a women complains about the menopause to me I might just laugh and say get yourself to the doctors for some HRT and deal with it, they have options, we have none.  I received my letter yesterday to say that won't be referred for any genetic testing so my daughter should just be tested from 35.  I can pop a DNA sample in a bank too apparently.  

The Look Good Feel Better session as fabulous, I highly recommend it.  The drive made me feel like a normal person as I was getting more and more anxious about long journeys.  The 2 hour session was lovely and the goody bag was fab.  Lots of tips on beauty, skin care and makeup tips when you've lost your eye brows and lashes.  You can do them virtually too and they still send you some goodies.

I am still in my dressing gown as have a horrid sore throat.  It kept me up loads despite taking sleeping pills.  More pills needed.  I must rattle by now.  I am feeling fat and horrible from the steroids.  They just make me so hungry and I know I am putting on weight now.  Argh it never ends!!

Sendings love and hugs xxx

DAB72
Member

Re: July 2021 Chemo Starters

Hi @katenonip,

Yes the tamoxifen is after rads has finished  I haven’t quite got as far as being told much about it yet but at my oncologist appointment next week we’re meant to be discussing  the next steps and radiotherapy in preparation for one my chemo finishes. 
I’ve heard tamoxifen can be quite intolerable for some people both in terms of side effects and the sudden menopause so I am a little apprehensive. Obviously HRT is out of the question but I wonder is that the case for everyone with BC or if someone like yourself is able to have it as that might help your symptoms? 
Drive carefully tomorrow, I hope the roads aren’t too busy for you if you are feeling a bit concerned about your driving ability at the moment. Looking forward to hearing all about it. Take care xx

sharlea
Member

Re: July 2021 Chemo Starters

Hello to everyone on July Chemo,

Is anyone scheduled for SIX cycles of TC (Docetaxol and Cyclophosphamide)? I’m asking because I had the phone consultation with my oncologist this morning and she confirmed that I was scheduled for six cycles. However, she mentioned that it’s uncommon to get beyond four, and that not many people make it to six.

She has revised my dexamethasone, yet again, so the big slump is not so pronounced this cycle, and I have plenty of liquid morphine left. But the chemo brain (as she called it), is a result of fatigue, which is not relieved by sleep. It has been getting incrementally better, but I’m fairly dozey most days, and certainly couldn’t go out in public anywhere, too wobbly on my feet after 10 minutes. My third cycle is on Friday afternoon, which would be halfway through the proposed regime ... am starting to wonder how on earth anyone gets through this.