Hi @poppy261 just catching up here. I had 12 x weekly paclitaxel which was quite intense. My experience was a bit different from @foxgem . I had no pain at all though I know a lot of people do report this. To be honest I had no SEs really till about half way through the 12. I definitely had the mouth taste (recommend citrus and fizzy drinks for that). I also developed an allergic face rash which was treated with extra strong antihistamine tablets and careful skin care. It did disappear. I also had quite a lot of nose problems, lack of nasal hair and thin tissues meant lots of nose bleeds. I ended up buying a humidifier to keep my nose moist at night. I lost lots of hair! All body hair and most head hair. My eyelashes and eyebrows didnât fall out till after chemo ended but theyâre growing back now . In the last two weeks I had a bit of acid indigestion which they gave me omneprazole for and it worked fine. I had absolutely no nausea or gut/bowel issues at all, kept up a healthy diet throughout. Also didnât get fatigue until the last few rounds and even then it was sporadic, just odd days. I kept up my exercise throughout too.
In summary Iâd say it wasnât as bad as I feared it would be, and the SEs I did get were weird, a bit unexpected but definitely manageable . Good luck!
FYI I also experienced an intense stinging in my cannula hand during my third infusion. This was caused by vein irritation and I was recannulated in the side of my wrist and finished the rest without issue.
Thought it was worth mentioning because the symptoms are very similar to extravasation, which is where the drug leaks into the skin surrounding the cannula so while itâs important to say something immediately if this happens, to potentially save unnecessary panic, it might not be the worst case scenario.
Iâm not sure if this is something any PICC ladies need concern themselves with.
Hope all goes as well as it can for your fourth session and change to Pax @poppy261
FOr anyone about to change who is very concerned about the small possibility of an adverse reaction. TRy and let the nurses looking after you know.
ČHey really do train like crazy to spot any problems and really will watch you like a hawk and respond very fast if like me you did have a sudden adverse/ allergic reaction.
CHemo wards all have a trained Dr on the unit they can call ASAP as well as very experienced ward sisters as well as the staff nurses. they will take the initial new dose slowly and be very close by to you âjust in caseâ.
IF you did have an adverse reaction Ăt will be managed with injectable drugs via your I/v. they will check your obs and responses to said relief drugs and if needed will call the Dr on the unit to help. IT is very scary if like me it turns out to be you ( please note I do have a history of adverse drug reactions and allergies) BUT try to remember the nurses have seen this all before, train hard and repeatedly to know exactly what to do and that for 90%+ of people everything is okay.
even if like me your unable to tolerate pax Ăt may be possible to switch to switch to Nab (abraxine) which has a different carrier to pax or similar drug once you have seen your oncologist. YOu can ask for an appointment with your oncologist before your next planned session if you experience an adverse reaction. SOemtimes Ăt just needs a few tweaks to dose and time, sometimes it needs some extra antihistimines or a longer dose of steroids, sometimes you really could be allergic to something in the drug so an alternative may be suggested as a Plan B, Please note oncologists will also have a plan c, d etc but tend to start with the drug that suits most with the most cost effective response for the type of BC you have.
I thought it was game over after three adverse reactions in a row then my oncologist pointed out that they had a wide choice of chemo drugs to play with and that they would work through the various plans till they found a regime my body did not react badly too and that they would see me before every single session and ensure reasonable adjustments with the ward sister in charge of the unit to help me feel safer. Yes I did cry on them at that point as I honestly thought I would die during those bad reactions. All but one member of the staff l have meet so far have been brilliant, compassionate, supportive and done all they can to help me feel safer.
may you all have lovely nurses who are attentive and compassionate and kind looking after you as you start Pax.
PSâ keep out of the sun and heat as much as you can though during this current heatwave on Pax.
Hey lovely, I know how you feel about the scan business with LobularCancer, or the âsneaky bastardâ as I call it! Interestingly, not on the NHS but privately they are now recommending for women with lobular cancer and especially what they consider âdense breastsâ- which was definitely me prior to my surgeries. I didnât feel anything or have any changes and mine was already in my lymph nodes. Anyhow, they are recommending in these cases That every year it is not just a mammogram and ultrasound but a full breast MRI scan as itâs the most effective way of looking at it. So push for that. X
Thank you all for sharing your Pac transition/experience. Iâll be moving onto that after Cycle 4 of EC, so not until August. Once weekly for 9 weeks, so a low dose, I think. All your experiences differ, and they all help to inform those of us still awaiting the transition of any of the side effects we may - or hopefully may not get! So a big thank you for sharing!
Agree with you @elastigirl , lobular is a âsneaky bastardâ! Mineâ's the super-sneaky pleomorphic lobular, grade 3, so itâs destined to creep back wherever and whenever it can. Itâs rare, but Iâm not the only one, I think quite a few of us have this weird, understudied variant of LC.
Had Chemo cycle 3 on Wednesday , so todayâs belly-jab day. Iâm currently feeling fired up on steroids but I doubt it will last much longer!
Thank you, @poppy261 for suggestions on getting the 3 litres of fluids down my neck! Iâm managing with a variety of hot drinks, cocoa, mineral water, which I like, and watery foods such as cucumber, grapes, salads, lollipops and fruit. Not keen on smoothies to be honest, plus I donât have a blender!
Anyone heard that we shouldnât be eating marmalade? Apparently Seville oranges are a no-no in any form, although I havenât seen EC or Pac listed particularly as the chemo drugs that react with them. Whoâd have thought itâŚ.marmalade! Still, grapefruit is a no-no with many medications unrelated to cancer, so I suppose it shouldnât be so surprising!
Hope youâre all managing to cope with the extremes of heat in the southern half of the country. Itâs currently 16° here, so for once Iâm grateful to live where I do! Might even pop the wig on! Have the best weekend you can, lovely ladies.
I have been mia. Had my third pac last week and had a reaction to it! However slowed down sterpids given and continued. Was then admitted with diarrhoea and released as they believed treatment related!
However I came in for chemo this Monday and was admitted. Have been here all week on super high steroids and turns out I have immunocolotis. Pretty rare for only one round so now they have decided no immunotherapy and no chemo this week until iv properly recovered.
Trying oral steroids tomorrow and hoping nothing regresses. Oncologist has said that now I cant have immunotherapy I will likely have oral chemo following surgery and radio therapy.
Hi @elastigirl the LobularBreastCancerUkâŚcharityâŚthink I got their title correct, are pushing for Lobular to be seen as a completely different disease compared to other breast cancers, because of the way it threads along tissue and is not a hard lump, so hard to feel. My lobular missed being seen on Routine Mammogram. Reached 13cm by the time i even could feel it, even then only half showed up on next Mammogram. By which time it spread to Lymphs. So yes they need routine MRIs which the charity are pushing for.
@bea4 glad to hear your temps are under 20°. That must be such a relief. Go use that wig. .
@jordx90 Im so sorry to hear you have had such a rubbish time recently. Sending you and extra virtual hug, love and strength..
That really sounds tough. My intestines reacted to the EC on Tuesday, very drug related. Not nice for a whole day, then after shocks since then. So I can partially empathise how you must be feeling. But obviously mine was to a lesser degree. I hope the hospital manage to get it all under control as soon as possible. You must be exhaustedâ .
Tough also when its altering your treatment plan. That must be frustrating for you .
You take huge care. We are all here if you just want to âsay it as it isâ⌠Or even if you just want to talk about the weather
@bea4 re marmalade It gets beyond confusing to navigate.
My take is, but the contradictions flow thick and fast, (so dont hold me to it) oranges, especially seville, for other reasons , are suppose to be too acidic for sensitive/delicate stomachs, mouths, digestive system that have been affected by chemo. Same goes with grapefruits and lemons. However, ive also read lemons (citric) is good to lessen the metallic taste from PacâŚconfused .
If anyone else knows more, I would love to hear other views. @sam1204 do you know âwhy?â On this? Many thanks.
Just read thisâŚ..Seville oranges and grapefruits are suppose to interfere with the livers ability to proces chemo drugs.
NB Grapefruit and seville oranges have -
ââcompounds that block specific liver enzymes. This causes certain chemotherapy drugs to build up in your bloodstream to toxic, dangerous levels.ââ
@elastigirl and @daffodil_dream popped over from the March starters. I was on the same Protocol as you both. Seemed to manage EC for three rounds three weekly with little side effects - managed pain from the injections at the end of my 7 days of injecting with a couple of paracetamol every now and again. Paclitaxel is not a friend to my body however my oncologist was pretty quick to review and amend me onto Abraxaine due to skin reaction and bone pain/spinal inflammation and leg muscle spasms. I went onto Abranxane (Nab- Paclitaxel) for my second dose which amended me to three more infusions three weekly like the EC. This does not affect the efficacy of the treatment itâs just a different (more expensive - get me! approach). This improved my skin reactions as I had none the next time but still the other bone pain etc but I was also given steroids. I have had a 16% dose reduction ( a complex calculation according to my oncologist - I suspect some form of Dark computational arts are involved!) which I had on Thursday so we will see how I fair over the next week. My symptoms usually hit from Day3 - tomorrow. I am just thankful that at each point there seems to be options and an alternative approach - so I suggest that you âbotherâ people even when you think itâs minor or a niggle or a little concern. Call the chemo ward, or your oncologist - tell them it all and ask the questions, let them help you. You are worth the bother - your friends and family would tell you all that in a heartbeat and if they wonât WE all will!
Hi @poppy261, thanks ever so much for the welcome and all the helpful advice. I did follow the thread with foxgem and sam1204 and found âChemo made me eatâ (please correct me if I have mis remembered) extremely informative. I was given no guide about what to eat or not eat by my chemo team, donât know if they were meant to. I think concentrating on my protein intake has really helped my body. Thanks ladies.
I hope @poppy261 that your 4th dose has gone well. I should be having mine on Monday . I hope this cycle is kind to you.
I hope the weather has broken were everyone is and that you are feeling a little more relief. The heat and side effects of my night injections made my temp and heart rate a bit high Wednesday eve. Spent 4 hours being checked over in hospital. Had antibiotics and saline , and was thankfully allowed home at 11.30pm. I felt so much better Thursday, the side effects were gone and I felt great. Perhaps the antibiotics gave me a little boost lol. Saw my oncologist today and he said I was ok to have chemo Monday. Phew. He also said patients have mixed reactions on the pacâŚ.some say side effects are better, others say its worse. I think its all a bit of a lottery how your body reacts.
@want2beme I am not sure about the scans eitherâŚI want to believe. More research needed and a better way to detect needs to be found!
Thanks for all the paclitaxel advice ladies, really appreciate it. I like know what may happen, and if it does, its not such a shock. Going to use Icepacks on hands and feet rather than the special gloves and socks. We have ice packs for lunch boxes and for camping. Cancer is expensive.
Love the idea of a wig, you can try a whole new look if you want. I think the most important thing, whether itâs wigs, head wraps, hats or shaving it all off, is to feel comfortable. We are all brave, even when we are having very understandable wobbles. Big hugs to you all.
Hi @elastigirl depending on where you are in the East, I did contact Simple Wigs who are North East. Simply Wigs Ltd (Offices & Warehouse)
Unit 2a-2c Spa Fields Slaithwaite
Huddersfield
West Yorkshire
HD7 5BB
They were extremely good at supporting ladies, and do mail support if you cant get to their shop. But I liked the fact they had a shop, not just Google/eBay.
They are NHS approved so they take wig prescriptions, if I remember rightly. (But you Team should also have a list of NHS wig suppliers near you.)
Simply Wigs had lots of wigs for average sized heads.
Sadly my head was a cm too big (typicalâ) so they were limited in styles for the larger heads amongst us.
So I had to go to another shop in my local area.
But I would recommend giving them a look on line. They are very good over the phone as well. Which is a huge bonus. And take payments over the phone, for people like me who doesnt do OnLine purchases.
Glad to hear you have navigated you way through some the different groups @baldiesrus . sam1204 has great food advice, especially around 100% cocoa . Its definitely a great group to explore and pick up eating tips. But I wish Teams gave you more support with food as its huge and so many contradictions.
I for one got totally confused with Yogurts⌠but have since learnt that I can have general yogurts like Muller, but not those with bio cultures and added live cultures.
Sorry to hear you had a setback but glad the hospital got it under control. Must have scary at the time though
Hope Monday goes without any pitfalls Each chemo cycle surely brings new challenges dont they.
My 4th went OK. But the first day is always manageable due rattling with every Medication possible . Time will tell
@poppy261 and others, regarding marmalade. Yes youâre right that grapefruit and Seville oranges have the same compounds that can interfere with chemo so are best avoided. Not so for other citrus, and as has been said lemon and orange are great for dealing with that nasty chemo taste. I eat loads of lemons as I donât drink milk and have lemon in weak black tea (which is delicious cold btw, especially in this weather). Having said all of that, when I started chemo I asked my onco if there was anything I should avoid eating and was told the only thing was takeaways as you canât be sure if their food hygiene is up to scratch. Wasnât told to avoid anything else at all. I did ask about soy as I eat a lot of tofu and soya milk but was told itâs fine. It might depend on the type of chemo? I only had paclitaxel, no EC.
Anyway, I avoided grapefruit and takeaways and am 6 weeks clear of chemo and here to tell the tale!! Often itâs a case of eating what you can or fancy, just to keep going.
Am very pleased people arefinding the Cancer made me eat thread useful. @foxgem and I see food as part of our medicine and we were getting so many questions we thought, why not set up a thread? The 100% cocoa for low neutrophils has helped so many people. It was worth me trawling through those clinical trial reports after all !!
Thanks so much for that @sam1204 . Seems Seville oranges and grapefruit could have serious implications. However I would have put Seville with other oranges, so thats where confusions come in i guess.
So glad you and @foxgem set up the food group, I surf through it from time to time. Lots of lovely ideas. I normally do eat very well. But this last two weeks Ive had less of an appetite, so Ive needed to have a variety of things at home, that âmayâ tempt me. My go to is smoothies as I can mix so many things in them. And I have craved different proteins. Some times fish, other times meat pies. But I also include nuts/seeds etc, dairy, daily whatever.
My hospital have a wonderful salad bar, that has a lot of vegi options. If I go there as it opens, and before the masses appear, ive been able to get a good box of lovely vegi food to add to my diet. I live on my own so I couldnt possible buy in all the different ingredients, but their selection solves my problem. Plus being a hospital cafe, I know their hygiene regime is as good as it gets. Im still alive also.
As an interesting thought, did you follow the advice on âno bio cultures/added cultures in yogurtâ. A number of hospitals seem dead against these. In their âno go listsâ
Second @sam1204 point about grapefruit, which can be notorious in its interactions with drugs, and bitter Seville oranges. Remember the OJ provided in hospitals and on chemo wards is safe for the huge majority and IF you were one of the ones who had to avoid it due to assorted drug interactions you would be told. TBH that may only apply to those who need to have chemo as inpatients as they tend to be the most vulnerable to food cross contamination and infection.
The sweeter eating/ juicing Oranges have a high level of vit C and that can help us absorb iron and all the other good stuff that helps our bodies make good blood. Kind of essential to have during chemo and IF your body struggles to do so despite your best efforts to eat healthily it is not your fault. some of us get hit harder by chemo than others and each round can be different. CItrus can help with taxel taste changes by making water more palatable. look for a good sweeter maramalade made without Seville oranges with a very high fruit content over sugar content. St Dalfour make an orange conserve devoid of added anything which may suit those who really cannot cope with sugar thanks to chemo taste changes or need to watch their sugars. This does need to be kept in the fridge once opened and consumed within four weeks.
as for yogurts, avoid those like Yakut that contain lots of still live cultures. These are clearly labelled as a selling point to promote gut health.
the huge majority will be okay with yogurt that has been made using live culture and again you will be told specifically by your oncologist if your chemo regime means you cannot have even these. UHT treated yogurt kills anything and again these are the yogurts you tend to find on chemo wards and inpatient wards as some peoples regimes are physically very tough and they are left very vulnerable. as an example I avoid all the contains lots of still live yogurts but do eat Greek Yogurt as it has no added sugar and I can add the fruit I can face. given chemo has really hit my guts hard I have to be slightly more careful. GK yogurt also has a higher protein content and is less highly processed than some of the promoted brand leading yogurts at eye level on the shelves.
If you are unsure if anything is safe for you to have on your chemo regime do check with the chemo nurses and if they do not know they will check it out for you.
IF you are on a tougher chemo regime than most that impacts your ability to eat a healthy diet your oncologist can make a referral to an NHS dietician /nutritionist for you.
ANY problems eating a balanced diet during chemo please let the chemo nurses know as they may know tips to eat a bit better. been thee had to ask. know you can contact your oncologist for support if you struggle to eat and drink on chemo. IF youâre struggling to even drink call the hospital for advice on the 24/7 cancer treatment number you have.
. In the last two weeks I had a bit of acid indigestion which they gave me omneprazole for and it worked fine. I had absolutely no nausea or gut/bowel issues at all, kept up a healthy diet throughout. Also didnât get fatigue until the last few rounds and even then it was sporadic, just odd days. I kept up my exercise throughout too.
Really appreciate this.
That must be such a relief. Go use that wig. 
It gets beyond confusing to navigate.
(so dont hold me to it) oranges, especially seville, for other reasons 
, are suppose to be too acidic for sensitive/delicate stomachs, mouths, digestive system that have been affected by chemo. Same goes with grapefruits and lemons. However, ive also read lemons (citric) is good to lessen the metallic taste from PacâŚconfused 
.
) so they were limited in styles for the larger heads amongst us.
. Its definitely a great group to explore and pick up eating tips. But I wish Teams gave you more support with food as its huge and so many contradictions.
. Time will tell 
!!