Hope everyone is doing ok and coping on their journies. This group really is great for sharing experience and keeping each other going
First Paclitaxil yesterday and after 4 rounds of EC, where some cycles were rough and admission to hospital with a chest infection/asthma flare, my worries about the switch and side effects thankfully havenāt come to anything as yet. Watery and gritty eyes and photo sensitivity my only small issue. No steroids other than the night before and on the morning and only Metoclopramide to use three times daily, if required. 3-4 hour infusion went well and I am feeling great today. Managed a long dog walk too .
Wonder if anyone can recommend a factor 50 sunscreen for sensitive facial skin. Iām using a Boots no 7 one and it seems to burn every time I use it so would like to try something different.
I swear by Ultrasun once a day. They arenāt cheap but can get sets from www.qvcuk.com that make it good value as well as www.ifsogo.com
They are also available in some supermarkets and JohnLewis.
I use the SPF50 anti pigmentation having upgraded from the SPF 30. Have very sensitive, eczema and allergies and had no problems with stinging or irritation.
I have heard great reviews with La Roche Posey Anthelios SPF 50 available in Boots and online. Designed for sensitive skins
Hi @lepw1705 Iāve just been reading posts here as starting chemo next month. My face is already very sensitive to the sun anyway, but Iāve been using Bioderma photoderm creme factor 50 - either available online or from some chemists. I find it the best for me. Have used LaRoche Posay too with good results. Hope you find a good one for you. x
Hi @anne3. Thanks for this. I bought the LaRoche one as it was on offer in Boots. Definitely worth the money and didnāt feel at all like a strong sunscreen when itās on.
I hope everyone is doing okay! I am officially half way through chemotherapy! 8 down 8 more to go! Felt like I would never see the day where I would have done more chemotherapy than I had left to go.
Im doing okay on paclitaxel, I have very few side effects compared to EC where I was really poorly. Had a quick visit to the acute ward as I was struggling to breathe and had chest pains but everything came back clear, apart from that its been pretty stress free since switching.
Had a really positive week this week. Had my MRI on Sunday, results came back and āBarryā (my name for it) has gone from 31mm to 5mm! And my genetic testing has come back negative. Im feeling really mixed about the genetic results because I have a very long history of BC in my family so have more questions than answers but have to just see the positive sides!
@glitteryrainbow Thatās fantastic news about āBarryā , and that your half way through your treatment, itās so good to reach these milestones and have positive news that the treatment is actually working .
I had 4th chemo out of 6 on Monday just changed to Docetaxel and phesgo injection, feeling a bit rubbish today but hopefully will start to feel normal again in a few days, but at least the sun is shining here in Herefordshire, certainly helps.
Hope everyone is doing okay. Xx
Such good news Barry has shrunk and your genetics was negative. Such a huge relief. I had genetics as I was bi lateral with two separate primary cancers with no family history. They warned me that there are very few people with genetic risk and that there are multiple factors that can cause cancer. Even with a family history, you can live similar lifestyles, live in the same environment and eat the same food that may have an impact on your diagnosis.
Hi everyone, I seem to be over the worst of the EC side effects now and feel like Iām properly half way through my chemo. Having a week away with the family tomorrow so feeling in a happy place right now, which is good because last week and the start of this week was dreadful, I was feeling so low from my final EC so itās good to have seen the back of it.
Iāve got 12 weeks of paclitaxel to come along with phesgo injections, Iām not sure of the timescale for the injections, but will have a phone call with the nurse next week, my oncologist is on annual leave so I canāt speak with him so I hope the nurse will know what the plan is. Iāve been reading with interest those of you that have started paclitaxel already and am relieved youāve found it easier than EC because Iām not looking forward to having chemo every week.
@glitteryrainbow Iām so pleased to hear you had good news that Barry has shrunk, Iāve already had my surgery so Iāve not been through that experience- must be a relief to know the chemo is having such a good effect
@rosa1 and @kiltie I hope youāre getting on ok. I did find my 4th EC the toughest to get through, I had more fatigue and the horrible taste in my mouth really got me down, it was so hard to decide what I wanted to drink as everything just seemed like it would be disgusting but I got there in the end and I know you will too - just try and take it one day at a time.
Iām sorry itās really hard to reply to everyone - I keep losing track of all the messages but I really find it helpful reading everyoneās experiences and advice and am thinking of you all going through this and trying to send you all positive thoughts and strength x
@dragonk Iām feeling a bit rough due to stomach cramps and bowel problems. Glad itās the last one but worried about the pacltaxel and peripheral neuropathy. Also so tired and was awake all night I think due to the steroids. Canāt wait for all this to be over.
I had some tablets prescribed for indigestion this time which helped a lot, I definitely didnāt get as bloated, although still had enough bloating and I still had a lot of acid reflux which Iām sure was why I kept waking up at 5am most days last week. Iām still not certain my bowels are back to normal.
I am worried if this is going to have affected my stomach and bowels in the long term.
I always have a sense of relief when the steroids are done and the filgastrim injections too, I have started to dread those.
Hi everyone, Iām glad there seems to be some good news floating around (@glitteryrainbow) and paclitaxel seems to be easier than EC for those that have switched. Iāve not posted for a while but have been reading everything and like @dragonk I do find it helpful and send as many positive vibes as I can xxx
Iāve had my first docetaxel last week, immediately found it easier as there was no nausea, then my 3yo gave me a sickness bug!! Luckily just 24 hrs. Iāve got to say, even with that, the first docetaxel was much easier than EC for me but the fatigue, wow, never slept so much.
Iāve met the surgeon who will hopefully do my diep flap surgery today, she made it sound much less scary than I thought which was great. I now have to visit 4 different hospitals for my treatment! Thankfully the one I go to the most is the closest.
One tip, if anyone struggles with a sore mouth, I found corsodyl mouthwash sorted mine out in a few days. I had what I can only describe as a furry white tongue!
Hi all - great to catch up on all the news and that Barry is getting a good kicking @glitteryrainbow .
Iāve been struggling since my 3rd dose last weds. I have had a horrible sore throat and cough since Saturday. Phoned the chemo line twice who werent interested because my temperature was fine so I went to gp on weds to get some antibiotics, I thought. Only to find my pulse was at 132 so they wouldnāt give me any and wanted to send me to acute medical unit. I rang the chemo line again and they said go to to a and e instead. I was there all day and passed from pillar to post. It was rammed and chaotic. They couldnāt find a reason for pulse and eventually sent me home without any antibiotics because my markers and neutrophils were fine. Which is good but has meant Iām still spending my nights coughing and not sleeping. every time I have review I tell them that after chemo I can feel my heart beat as in itās very noticeable - I can feel it thumping in my chest and when I go for review itās calmed down. So perhaps itās my body reacting. I have another heart scan on 8th aug as herceptin can put pressure on the heart so weāll see whether that does anything.
Apart from that they gave me drugs for a urine infection I didnt know I had. I have found that since starting chemo Iāve needed to pee quite urgently and without warning which I assumed was the effects of chemo - who knows. Iām taking the drugs and weāll see what happens.
Was thoroughly cheesed off. Last chemo is on 31st July. Fingers crossed this bug does one but itās made me want to be a hermit in terms of social interaction until then! My two boys finished school yesterday - already bored . Have spent a fortune on holiday clubs just to keep them entertained and outta my hair.
Iām having Herceptin, now at 15/18 and already have a tachycardia issue with my heart, taking med to control it. My ejection fraction has reduced from 68% to 60% over the last 9 months and I notice some breathlessness walking up hills but normally day to day is ok. Normal range is 70-55% for ladies, so the team were ok with this. Hoping itās doesnāt go too much lower when I have my final scan end September/early October. It can be really scary when your heart races and always good to get checked out. I had suffered for several years before I was diagnosed with tachycardia (before bc). Menopausal symptoms can also cause faster heart rate.
You might get heart problems such as a change in your heart rhythm. Or you might also have changes to the heart muscle. This can sometimes cause problems pumping blood around the body properly. This is usually if you have trastuzumab with some types of chemotherapy drugs.
This treatment can cause chest pain. If this pain is severe, call 999.
Some people on this treatment might get fluid around the heart (pericardial effusion), but this is rare. Symptoms can include a faster heartbeat, shortness of breath, and feeling tired and dizzy.
You will have regular heart checks before, during and after treatment.
I hope it all settles down, the last thin* you need is visiting A&E again with all ther germs etc. I hope they treated you well in a private room with your weakened immune system.
Youād think so but no they didnāt. I was placed in a priority patient corner that any tom, dic or Harry came to sit in which was really just a space a few chairs from everyone else. No one reads signs do they. I was totally chaotic for a weds morning.
They gave me a mask and after bloods were taken I was taken into a side room, However, the minute they saw I wasnāt neutropenic (which I guess is a good thing) they told me I could not longer have the room and sent me back out to the main area.
The GP was so concerned about my heart rate but they seemed so focused on this urine infection. I am taking the meds they gave but having never had a urine infection im not sure if the urgency is that or a bad pelvic floor. My pulse feels normal today.
I will say that I havenāt been wearing a mask anywhere. I might do now. I donāt want anything to jeopardise my final chemo Iām not socialising like mad but Iām certain I would have fought this bug by now if not for the chemo.
Treating a UTI is really important as if not treated it can cause Sepsis which is dangerous. I had a UTI a few weeks ago and the oncology team were upset with my GP as they said i would be called within the next two weeks! Even on Herceptin, your immune system is lower than normal, but no as bad as on chemo, and they were worried about Sepsis.
I was having chemo September to December and wore a mask at all hospital or doctors appointments so as not to catch any germs, and I didnāt. My only infections were from within, such as UTI and thrush, mainly caused by low immunity.
If your UTI doesnāt get better in a couple of days with treatment, call your GP or team again.
@snoop182 i would urge all of us on chemo to wear a mask when out and about, preferably an N95. There is a lot of covid about at the moment, you reallly dont want that with low immunity and heart issues.
Pax round 3 today for me - I have to admit to being pleasantly surprised at having NO symptoms or side effects apart from a bit of a skippy heart - which is a little concerning but the ECG they did today showed no irregularities, they just said to monitor it carefully. I havenāt heard of anyone else talking about it so itās probably (hopefully) just weird old me with my random reactions! @naughty_boob thanks for the info - they said I may have a 24 hour heart trace if it continues but to be honest whilst it does feel a bit scary itās not painful or stopping me doing anything so hopefully it will go when the chemo stops ).
Usual steroid madness, four loads of washing, hoovering mopping and a three mile dog walk since I got back and Iām still looking for things to do!!
Also, too hot to wear a head covering today so I braved it and went NAKED! gosh it was liberating! I knew people were looking but I actually didnāt care, I felt brave! (not sure what happened to the photo but I promise itās only my HEAD thatās naked! ).
Hope everyone is well enough and doing okay on this unenviable journey xx
You look fabulous! I finally recovered from my horrid virus (throat still croaky though) to go on my look good feel better skin and make up workshop yesterday. It was great and I did feel good afterwards. Got loads of beauty goodies and some really good tips and makeup instruction - never been very good at that stuff so I know feel more confident about returning to work - particularly as my eyebrows have started to thin and eyelashes on their way out. if anyone hasnāt done one I highly recommend it. This is what I got in my pack.
Pleased you feel better now- and that looks like a great goodie bag! so glad you had a good workshop - I bottled it last minute and cancelled mine, but then regretted it Iāll look at getting on another.
I canāt believe youāre almost at the end of your chemo already! I know youāve still got to deal with tamoxifen and whatever that brings but you can start to think about life beyond treatment - a scary but exciting place! My last Paclitaxel is somewhere around September 6 and Iām then having some annual leave alongside radiotherapy before a phased return to work - itās been a while!
There are still things to be careful of but lots of this is beyond our control. One thing Iāve learned is to stop trying to influence outcomes too much! and to just go with it. I think that will be useful in the future- people have commented that Iām a lot more rational and level headed these days!
Massive well done for smashing the chemo, hope all goes to plan this week/ now you can get some celebrations in the calendar! xx
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. Have spent a fortune on holiday clubs just to keep them entertained and outta my hair.
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Iāll look at getting on another.
and Iām then having some annual leave alongside radiotherapy before a phased return to work - itās been a while!