Ist chemo

[Craftycromwel]

Hi everyone,

I'm having a PICC line put in on Monday and start my chemo on Tuesday, can anyone give me any advice as to how I may feel after my first chemo, it taxel/carbohydrates

Many thanks

Ann

[RonLitBer]

You will hear that the line "we are all different" quite a bit so it is difficult to give a definitive response. As far as as I was concerned I had no bad effects initially. There is a fair bit of pre-chemo medications that I was given. I did not feel any different with treatments #2 and 3 even though I was getting IV/IP treatments. #4 hit me hard and so did #5 and #6. I had to be hospitalized after #5 and they found a blood clot. Treatments are cumulative so typically as you go along the effects add up. That said some people sail through it while others do not. I was part of the latter group although I imagine the IP treatments had a lot to do with that. They ordered at-home hydration for my frontline as well.

[Craftycromwel in reply to RonLitBer]

Thankyou for your reply about your experience, hopefully I should be ok, it's just the unknown,

Best regards

Ann

[Lind58]

From my experience with my mom the symptoms did not kick in till about 24 hours following. Drink as much water as possible, you will be exhausted at times. Take it easy, and try your best to eat.

[Craftycromwel in reply to Lind58]

Thankyou for your helpful tips, especially about drinking, is water the best?

Regards

Ann

[Lind58 in reply to Craftycromwel]

Yes, pump fluids all day really helps speed up the recovery process. For my mom by the 5th day she starts feeling better and more like herself. She has a lot of bowel movements also so I would recommend binding food.

[Lindaura]

Hi Anne,

I join the chorus of “Everyone is different”.

I myself had a rough ride on Carboplatin and Pacitaxel (Carbo/Taxol).

I was originally diagnosed as stage 4, because of the pleural effusion that crushed my lungs, but that was downgraded, thankfully, to stage 3, as there was no other sign of spread to the inside of any organs except my ovaries. But there were hundreds of tumers and lesions all over the outside of my bowels and inside my abdomens cavity.

And, I had blood clots inside both lungs, caused by "sticky blood" another gift from the cancer.

What I am getting at, is that the cancer and the treatment wiped me out, and except for a few moments here and there, I was basically bed ridden for 7 months.

I had most of the side effects listed

For this combo:

Nausea, which started the first morning after Infusion. This took a long time to resolve, but I finally found a way to manage this by the second month.

I ate and drank very little until I got this under control.

This wasn’t helped by my tastebuds which went extremely wonky and most food tasted awful during the 6 months of treatment.

Bone Pain that came on during the first week, starting in my ankles, through my shins and knees and then hips.

Icy feet and ankles, so bad, I had to wear my UGG boots to bed.

Anaemia, from the very first infusion. And then after the 4th Infusion.

Had to have blood transfusions twice.

Had to have IV Magnesium and Potassium.

Lovely Diarhea!

Fatigue, weakness, dizziness amd the famous Chemo Fog that made everything hazy.

I think that’s everything!

I hope you have none of the above!

Hugs,

Laura

[Artgreen]

Hi Anne, I’m nearly half way through weekly taxol and 3 weekly carbo. The big ones make me feel nauseous for several days and very tired but the weekly taxol isn’t too bad except for bloody noses and some joint pain which comes and goes. Energy levels change, hair falls out and I have to have injections to help my immune system as neutrophils got too low.

There’s a lot to take in but as people say, we’re all different and respond differently. Excercise seems to help but don’t go too far in case fatigue sets in .

I do hope more targeted treatment will be available soon for us all.

Love

Alex x

[Craftycromwel in reply to Artgreen]

Thanks Alex for your comments, Its interesting to read how chemo affects people differently

Best wishes

Ann x

[ElayneZ]

Hi Ann - I was diagnosed stage 3 in May 2018. I had 18 consecutive weeks Taxol - with carbo every 3rdweek. Finished chemo end of October! The not knowing what to expect was hardest! I’m thankful biggest side effect was fatigue. Blood counts dropped and had injections for white cells and transfusion for red. Had a great team and they kept side effects to a minimum. There’s a pill for so many things. Never was nauseous because of anti nausea pill. And had daily BMs - again there’s a pill if needed. My joints and muscles were sore at times but Tylenol helped. Truly listen to your body! Stay hydrated! You’ve got this! Blessings! Elayne

[Craftycromwel in reply to ElayneZ]

Hi Elayne, please may I ask why you had taxel weekly and carboplatin three weekly , I'm having both three weekly

Best regards

Ann x

[ElayneZ in reply to Craftycromwel]

The doctor felt weekly was best for me and would be more tolerable. Ive read many posts here from ladies that were also on weekly treatments.

[Lyndy]

Hi Ann

I felt tired but otherwise fine after first chemo but it is cumulative so by number 4 I was feeling it a bit more. Never had sickness but did end up with infection which led to being hospitalised-although I still felt fine!

Try not to anticipate but do follow the rules set by your team- even if you think you are fine xx

[Craftycromwel in reply to Lyndy]

Thank you Lindy for your helpful reply x

[mrstadpole]

Hope all goes well with your chemo.I was really lucky with mine (carbo/Taxol for 6 infusions) and didn't have any effect really apart from feeling a little tired but that may have been the surgery.I was given iron tablets and they made me very constipated but my surgeon said I only need take them for 2 weeks but they were very unpleasant.Take care Ann x

[Craftycromwel in reply to mrstadpole]

Thank you for your helpful reply x

[TudorPurr68]

Hello. You might feel a little sick and you may be fatigued. Have plenty fluids and plenty rest. I had a picc line and it was no trouble. I wish you all the best. Jayne x

[Craftycromwel in reply to TudorPurr68]

Thank you Jayne, that's reassuring about the PICC line x

[delia2]

Hi. It’s really important to stay on top of constipation! The anti-nausea meds of which there are many and they work—are all constipating though you can also get diarrhea and you have to stop that from dehydrating you. I had to get over hydration my first cycle because of not realizing what was happening. My worst side effect is extreme fatigue days 6-10. Plus leg and stomach pains days 5-8. I also have neuropathy mostly in my feet and breathless ness from anemia. I got a transfusion with cycle 5 and it gave me great energy for 3 weeks. I just finished my 6th infusion on Friday and am really happy. Keep a daily journal of how you are feeling. It helps you see patterns and plan for good days. I was able to do 2 dog walks-total 2.5 to 3 miles every day except 6-10. But as everyone says we all react differently. I wish you an easy time but if you feel down-which happened to me with fatigue-reach out here or write in your journal. 💕

[Debsmany]

I know everyone has mentioned this, but drinking water and munching on snacks during chemo is important. Once chemo over, you want to flush out your system and drink, drink, drink. I also began nausea meds as soon as I got home(chemo took 6 hrs each time). Was given nausea meds during chemo, but my doc reminded me easier to prevent nausea than trying to catch up after feeling sick.

I felt “ok” the first three days after chemo, then day 4 through 7 I felt beyond weak... however, as soon as you figure which days are hard, you can recognize it and deal with it.

Good luck, I am ( as a two timer )sure you can do it.... the anticipation is hard!

[Craftycromwel in reply to Debsmany]

Thank you Debs for your encouraging reply, I've now told myself to drink drink drink,

Best wishes

Ann x

[Irisisme]

Hi Ann,

I think everything has been covered but no harm in emphasising some points-

We are all different (I had no nausea but some really bad abdominal pains 4 to 6 days after a dose).

Yes, keep hydrated.

Don’t put off taking laxatives - it hurts less to be loose!

Keep a diary - firstly of side-effects, but mine has grown based on what Health Professionals have asked me - e.g. “when did you last have your bowls open?” Look up the Bristol Stool Chart.

Look up the Stanford pain chart,

Note how fatigued you’ve been on a 0 - 10 scale too.

ONE MORE THOUGHT - I also get copies of all my blood results and CT scans. It’s mostly because it helps me to feel in control rather than feel that the Professionals are doing things to me without my input. It’s been interesting, like my last CT scan (5 months after 2nd line chemo). My Oncologist said my chest was normal (I have been breathless) the report shows “mild groundglass shadowing” - ok so I Googled it, which isn’t always a good idea, but this is NOT normal!

Good Luck Ann,

Lots of hugs,

Iris x

[Craftycromwel in reply to Irisisme]

Thanks Iris for your reply and very helpful tips, I'm very much the same as you about scans and blood tests, I always what to know exactly what the scan says and not just the bits that the drs choose to tell you, I was originally told it was on my ovaries and omentum, then when I saw the specialist gynaeoncology surgeon he told me it was also on my liver.

I love your quote ' it hurts less to be loose', I'll certainly remember that, lol

Regards

Ann x

[Maus123]

Hi Ann. I hardly noticed the first round at all. Side effects really started coming in from the second round onwards, and got stronger along the way.

For me, it mostly had to do with bowels/digestion (constipation in the first few days, so I took Movicol, then followed by the opposite for a couple of days, which I just endured, with help of a clean path to the loo and a travel bidet ). Some annoying skin problems on my head, when the hair came out (ended up reducing the Taxol dosage to 80%). A variety of other side effects but none debilitating or causing hospitalization.

Nausea was noticeable but relatively moderate, for me (I took Emend). The latter chemos had me bed bound for a couple of days, but not in writhing agony or anything... just tired and a bit wobbly.

Just don't make big plans. Wait to see how you feel. Hopefully, you will be feeling reasonably well at least in the latter week or two, as was the case for me. It helps to keep a diary of how you feel and what meds you take on a daily basis.

Best of luck with chemo. It's doable, you'll see. And if it isn't, start whinging immediately so you can get some relief. xx. Maus

[Craftycromwel in reply to Maus123]

Thank you Maus for your helpful reply, especially about keeping a diary

Regards Ann x