May 2026 chemo starters

Goodness @want2beme that sounds tough. But well done you for staying so calm. :heart::person_in_lotus_position:

Sometimes they put people on the gentler Paclitaxel… Nab-paclitaxel which people can react less to due to its composition. They can Reduce the dose. Other times they will change the type of chemo completely, or even stop chemo.

The Teams have lots of options to work with. So, I think you have got the right attitude of enjoying the next 1-2 weeks off, and having a rest. With the Summer Holidays in full swing, a break may be just what you need. :heart:

I think the 2nd 3rd infusions are notorious for throwing this at us. I would also ring 24/7 helpline before you see your Oncologist, as they will be able to give you further advice and support.

Thinking of you. :flexed_biceps::heart::sunflower::people_hugging::heart_exclamation:

2 Likes

Week 11 done! Last Pac next week then starting on Pembro/EC on 14th August for 3 x 3 weekly cycles. :partying_face:

4 Likes

I’m a may starter I’m still hanging in here !!!

Sounds like i’m the other way round to you @mssteel i’ve just finished my fourth EC and I will start on pac. on Wednesday for 12 weeks. I’m interested to know how you have found the pac weekly? With EC you get that nadir low & definitely need three weeks to have a recovery week as it’s really tough, but do you get a low with pac and a good few days??. I’m just worried with it there’s barely enough time to recover before you have the next one if it’s weekly.!!? I’d be interested in everybody’s take on it so I can be prepared. It’s funny isn’t it / You just get used to how to manage one sort of chemo in terms of recovery and at what point you’re going to feel tired , fatigue, sick sleepless , pain. Then you move onto another type.!!

Its good that EC mix will be 3wkly @mssteel . At least you will have a better recovery time between each cycle. You’ve done incredibly well. :heart::flexed_biceps::people_hugging::sunflower:

1 Like

Pac weekly seems to be a lot kinder than 2weekly dose dense, which Im on @elastigirl . I spoke to an 80yr old lady the other week. Shes on weekly and she’d had no side effects at all. Which is a positive. But side effects do vary person to person.

My side effects for 2wkly dose dense have been :

Savage fatigue/weakness, day 3-7 (2nd Pac the worst, could barely do anything during that time); TAPS muscular nerve pain day 4-6 but variable over days (painkillers helped manage it well); very thirsty, find fridge cooled water best; needing to eat regularly to avoid sickness, (even during the night sometimes), but appetite gone completely, so I have to make myself eat; taste buds gone for sweet things and chocolate (which taste awful), but savories are fine (which is good, I like savory food); hot sweats if I do too much/plus night sweats (but heatwaves have not helped); fingernail/toenail changes, but still hanging in there; still slowly losing body hair (head hair went day 16 of EC), eyebrows/lashes going, (annoyingly I have a swollen eyelash follicle today, due to them dropping out); skin sensitivity day 2-4 on hands and feet, but better with 2nd Pac (against all advice I avoided strong moisturisers the first couple of days, which worked for me) ; constant runny nose as nasal hairs have reduced (nose bled briefly today for the first time); dry eyes/weeping eyes (use eye drops) ; unsettled guts for a couple of days soon after infusion (neither too much either way, but just feel guts are aggravated and need the toilet multiple times during the day, then it eventually settles down (no need to take anything just eat well/drink loads); aggravated/sensitive bladder on and off throughout every day. Made more irritating due to drinking loads :person_shrugging::person_facepalming:.

Pacs been less toxic than EC, but its had its challenges as dose dense 2wkly.

Initial infusions can be tricky with Pac for some people, but Oncology Teams seem really on the ball. To date, Ive been fine during 2 infusions, just noticeably tired, (not like EC dizziness). Im not complacent, as at any infusion, complications can raise their heads, but I try to stay as calm as possible/sleep/rest during the 3/4 hrs . I dont go to the toilet for the first hour of infusion, as the Nurses said people can faint. So I go to the toilet prior to infusion, then after the hour I can go anytime….with the infusion machine attached to me of course :rofl:.

Blood counts have gone up for neutrophils throughout chemo, but on EC HB was reducing by 5 each cycle. My last HB blood test, during Pac, showed an increase in HB. The first time since chemo started. So Pac seems to be less aggressive on bloods so far. But that could change at each cycle.

My PICC was a problem today at my flush session. Not sure if its PAC related. First time Ive ever had a problem. They couldnt draw blood. So I needed an XRay. If they cant draw blood next week before infusion 3, I will need either harsh drugs pushed through it to remove “the problem” :thinking:, or removing it completely and a new one fitting. Till then Ive been told to keep moving my arms/keep drinking loads to try and move the line away from possible vein wall, to see if that helps first.

Hope this helps. Fingers crossed weekly is better for you. :heart::sunflower:Just remember to rest as much as you can, to give your body time to recover. Eat lots of protein and drinks gallons. It does help. :heart:

Good evening all,

Have been mia. Ended up having infliximab in hospital and am now on fortnightly infusions of that.

Have just spent a week at the lake district with my family for a break away which was so needed. My sister came down from scotland and I havent seen her in two years. Hadn’t met my smallest nephew yet so lots of emotional tears.

Had pax and carb last Monday after a three week break and it completely floored me felt exhausted. Am back in monday just for pax so hoping its an easier session.

I have just put an application in for PIP not sure if anyone else has done this?

Hope you lovely ladies are doing ok xx

Lovely to hear you’ve had a family trip to the Lake District @jordx90 . You will have seriously needed that. ,:heart:

Fingers crossed your next Pac is easier on you.

The draining fatigue of Pac is different to EC, but equally debilitating if you get a bad reaction. Its like weights on every muscle. But not weights that make you healthy, tough ones that sink you into the ground like sinking sand :scream:. So make sure you rest as much as you can before, during, and after infusion.

Re PIP …I was going to put in an application but chemo got the better of me. :woozy_face::nauseated_face: Worth putting in an application. Cancer is expensive and more so when you have a young family. So go for it. Xxx

Hoping infliximab helps and makes life easier for you. :heart::flexed_biceps::sunflower:

Will be thinking of you… :heart::bouquet::crossed_fingers::people_hugging::flexed_biceps:

Thanks @poppy261 so much for all the info , sounds like it’s quite different to EC. I’ll bear in the mind having a wee before it all starts , good tip. ! X

Hope everyone is hanging in there :two_hearts:

1 Like

Congrats on completing the EC @elastigirl!

I’ve already had one dose of EC as I started originally started on adjuvant chemo at the end of April before switching to a different neo-adjuvant regime in May due to an early local recurrence so I felt like I would kind of know what to expect. But I was speaking to a lady in my chemo unit yesterday who has completed four EC cycles and she said she was different on it each time. Did you find this or did it follow a similar pattern?

The new neo-adjuvant regime I started in May included Pembrolizumab and Carboplatin every third week, but there are two weeks of Paclitaxel by itself in each three week cycle too. The side effects on the Pac only weeks for me are moderate fatigue, low mood and irritability for days 3 and 4, then starting to feel better on day 5, then feel mostly fine days 6 and 7. This is all based on my current lifestyle being pottering around the house, mind! I think if I had small kids to run after for example, it all might have more of an impact.

1 Like

Thanks @poppy261!

I’m anticipating some painful side effects but hoping they’ll be at least short-lived. :crossed_fingers:

1 Like

Thx @mssteel I have absolutely no idea if my pac is going to be mixed in with other chemos , I guess I will find out on Wednesday ! My chemo nurse said the EC, Red Devil as it’s called is a tough chemo to get through, with some people finding pac comparatively less so x

I would agree that the EC is a little bit different every time, obviously the effect is cumulative so definitely with each round I have felt worse. Each little symptom I had seemed to get progressively worse with each round. I genuinely did the first round and as my chemo nurse said to me, you seem to have nailed that! Though I would say apart from obviously the stage 3 Cancer , which snuck up on me and blindsided me - I was a super healthy physio @ 50 , active go to the gym four times a week , I also teach Pilates three times a week & walk my dog up to 5K every day , & eat well kind of person. So I think I went into it super healthy which made a massive difference, but obviously the chemo does grind you down.
For me, it’s the steroids they give you with EC that caused me the most problems with lack of sleep but then saying that It prevented me from getting nausea and sickness, had none. but then I am really not a sicky person at all - they said to me if you were prone to travel sickness or pregnancy sickness that is a good indication of whether you will get it during chemo. Yes, the fatigue is there, super low mood , by 12 days I definitely had a mouthful of ulcers. The gastric issues were a big problem for me going between constipation and diarrhoea but again all manageable with diet and some meds

Keep well hydrated, ‘walk and water’ is my mantra - flush that chemo through your system and move it through your system!! then every day eat , ‘berries beans and greens’ x

Very grateful for all the info and shared experiences on here , it really does help x :heart_eyes:

2 Likes

Thanks for sharing your experience on the EC. Agree that talking to other patients has been absolutely priceless throughout this whole thing. x

1 Like

It’s so interesting to hear how everyone’s experience with each drug can be so different. It really isn’t a one size fits all!!

I noticed that yesterday and today I’m exhausted, just sleeping loads, slightly achey as well, but nothing like EC.

One thing that is affecting me is I feel spaced out, which is making me clumsy :face_with_spiral_eyes: I’ve hit my nose on a cupboard door making me have a nosebleed and bruising, I’ve hit my head on a door handle, and sort of tripped, hitting my middle toe which is now seriously bruise!! :woman_facepalming:

I’m not actually sure I’m that safe to drive, so I won’t for now!!

I also have really quite blurry vision.

Anyone else?

Oh the joys ….

Oh @alannah172 thats not good. Doing one thing that hurts us is bad enough, multiple bangs is awful. Thats a lot of bruises/bangs. Sending you a huge hug and love. :heart::people_hugging::bouquet:

Re Blurred Vision on Paclitaxel….the advice is to contact 24/7 straight away, as it is a side effect of Pac, but needs checking with your Team asap so they can assess why its happening and how to manage it. It may also be why you are feeling more clumsy. If you cant judge distances and items because your sight is blurred, you will bump into things. But weak muscles/mild neuralgia/peripheral neuropathy, will also add into that.

You are sensible not to drive. I cant drive for a full week after chemo. Even with Pac, I feel far too weak to get behind the wheel. I get taxis instead.

The list for side effects is huge with Pac. Some seem more common, some less so. But my Team said …. Even minor side effects needed reporting to them, so they can ensure problems dont get worse.

So ring your 24/7 Team today if you can. I wouldnt leave blurred vision/injuries till Monday. :heart::heart::heart:

Fingers crossed it can be sorted quickly. :crossed_fingers::crossed_fingers::crossed_fingers:. Make sure you rest as much as you can. Its my “go to” everytime to let my body cope with chemo. :heart_exclamation::heart_exclamation::heart_exclamation::sunflower::sunflower:

1 Like

Oh that’s interesting @poppy261 I hadn’t realised it was something to take so seriously :worried: god how typical, yet another hassle.

I tell you what, apart from the obvious reason, this chemo can’t end quick enough!! I’m fed up of having weird symptoms :roll_eyes:

I’ll give them a call this afternoon. I’ve realised that I don’t have a call booked in with the nurse before chemo on Tuesday like I did with two weekly chemo. I’d normally discuss this kind of thing then.

Thanks for the advice xx

Fingers crossed 24/7 can give you good advice, and reassure you. @alannah172 :crossed_fingers::heart::bouquet:

The side effects are awful aren’t they​:nauseated_face::nauseated_face:. Plus theres loads of them, so really hard to navigate. Blurred vision can be a huge worry, especially if you cant see things properly. :heart:

Ive got it tattooed in my brain now that even minor symptoms need reporting. My Team wrote it in my log book as well.

If I contacted my GPs for minor things, they would complain I was being a nuisance and say it was “all in the mind”:person_shrugging::person_facepalming: .

But chemotherapy is a totally different ball game. Most of the time the side effects can be managed, but we dont know until Oncology tell us that. Other times, symptoms are serious and need further assessment.. So i put the ball in their court.

Let us know what they say. :heart::heart::heart::people_hugging::bouquet::bouquet:Thinking of you. :heart:

1 Like

Thank you Poppy :smiling_face_with_three_hearts:

I called them and they’ve said to just keep an eye (ha ha) on it. I don’t have a temperature or any other side effects.

I’ve ordered a home blood pressure monitor arriving tomorrow as I may have low blood pressure.

We’ve decided I’ll take it easy and talk to my oncology team on Tuesday at chemo.

I’m also going to get my eyes tested as I’m soon due my annual check soon!

I feel better talking to them anyway :blush: and thanks for your advice :smiling_face_with_three_hearts:

Im so glad you called them @alannah172 . Then its their responsibility to find causes. The advice is…. to not wait until next appointments to check on blurred vision. So you did the right thing.

24/7 also have to let your direct Team know on Monday. So they can check further.

Fingers crossed its nothing more serious. :crossed_fingers::crossed_fingers:

But a Blood Pressure check/eye test is also a good idea to rule that out.
Just rest as much as you can :heart::heart::heart:

1 Like

I would honestly try to wait until you are able to have a discussion with your oncologist. They are the ones best placed to medically advise what is best in your case and are best placed to answer any questions.

I had three adverse reactions in a row regardless of what supportive drugs the chemo unit used or what speed the stuff was delivered as soon as it hit just over 5ml l had an adverse reaction. I thoughtI had failed at chemo till my oncologist scooped me up. Yes nab paxitaxel can be a tad gentler especially abraxine ( branded version which costs more) I was given extra steroids and antihistimines via drip before having it just in case l reacted to the taxel rather than the carrier organised by my oncologist. It did mean l was in the unit all day as they would not let me home until they were sure I was not reacting. I did have a delayed reaction but the oncologist solved that with an extra five days of predisalone steroids after I finished taking dexamethasone and daily antihistimines . I was also allocated the ward sister in charge as the most experienced chemo nurse that day. I was also placed next to the nurses station close to the doctor ‘just in case’. Turns out I am very allergic to the drug carrier. The oncologist also assured me that they had a plan c and plan D they could use IF l reacted to abraxine. I have also had a specilist chemo nurse and been placed right next to the duty oncologist on the unit when they gave me hepericin (sp) by drip as I had had all the rounds of Phesgo I could have presurgery but adverse reactions had caused delays to chemo and the oncologist advised it. That said l have a history of previous adverse drug reactions and an atopic tendency so it’s little surprise CHrmo caused new ones to be added.

Being the one who has such a reaction is scary as heck, l would be lying to say otherwise as I honestly thought I was going to die the first two times as nurses had to call in doctors. The third time I had three trained ward sisters with all the drugs ready and they reacted super fast. By the time I went in to try Abraxine l was an absolute wreck from terror. The staff went more than the extra mile and did all they could to not only say they would look after me but showed it by allocating me a chair where I did not have to see others having chemo but the nurses at the nurse station could all see me. That helped me cope as I could not stop shaking or crying as I kept expecting another severe adverse reaction. Some poor soul in the same area had an adverse reaction which l could hear but thankfully not see. They too had to have the duty oncologist called in. I hope they went on to have a supportive oncologist as I doubt they could continue without.

It’s okay to let the staff know if your previous experiences with chemo have left you beyond nervous, staff having seen my adverse reactions were impressed l even came back to the unit.. I only went back because my oncologist promised to take my back and do all they could to manage chemo for me.it took some doing as I also found the side effects b.a. but l managed to get to the end of abraxine, carboplatin and Phesgo with surgery in a couple of weeks for HER+.

I truly hope you also have a supportive and compassionate oncologist in your corner who can manage your reactions and any side effects so you can cope too. It makes a world of constructive difference.

2 Likes

Hoping this week has been kinder to you @baldiesrus . If not sending extra hugs and love :people_hugging::heart::bouquet::crossed_fingers:.