Well, I have been sick as a dog since Thursday afternoon. Basically the same side effects I suffered with first line, except, thank goodness, no bone pain!
Just terrible debilitating fatigue, dizziness, loss of appetite, achy joints, sore throat and head ache. But what makes this even harder is that I cannot take Omeprazole with the targeted drug, and the replacement, Ranitidine, just does not work for me.
Consequently, my stomach is boiling with hot acid and the only remedy that works for me is to throw it up. Not fun.
I am not sure if the targeted drug and the Taxol work together to destroy my bone marrow, but I am suddenly weak and pale and totally breathless if I walk up one flight of stairs.
I am worried that I won’t be able to stay the course and feel like I will wind up with a stomach ulcer if I do.
Anyway, I go back to London on Tuesday morning and I have asked a friend to accompany me from Bath, to help me get on the train and to accompany me to the Royal Marsden.
I was healthy as a horse at the start of the trial, last Tuesday, but now I don’t Think I can walk to the train platform myself.
I always heard that weekly Taxol was easy to tolerate, but I am not doing very well already and if side effects are cumulative, I am doomed.
Here’s hoping my beautiful research nurses will think of something to help me.
Perhaps a lower dosage of both the targeted drug and the Taxol.
How is everyone else doing on weekly Taxol?
Sorry to whinge.
Just so disappointed.
Hugs to everyone , from my basement bedroom (was my husband’s music studio, but next to a Loo).
Laura
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Lindaura
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Vicki was on weekly Taxol and was fine, but when she went on a trial called Onyx she didn’t make it to the end, she had to give up, it was making her so ill.
Take care and make your decisions with as much information as you can, especially where ‘ordinary chemo’ is concerned and how this trial will affect you if you wish to change back.
Love and hugs to you and hope you feel better soon
I’ve been on weekly pacletaxol and fortnightly Avastin for 10 months now with one recovery week off a month. Effects are cumulative but still I think can be very different side effects for different people. I have many, varied unpleasant side effects but not as devastating as you are experiencing. I do hope you can get some good advice and help soon. Take care. Xx
I wasn’t able to go back to work. Fatigue is worse than last years 3 weekly chemo. It’s not a tiredness you can work through. Get a boost with steroids for couple of days then few days nauseous and more tired then day b4 treatment again often Okish. Just learn to work around better days. I am on own at home now but family nearby and always willing to help but I am stubborn and do what I’m able to do. I think it’s the stubbornness that keeps me going. My poor dog has just been diagnosed with bowel cancer plus lymph node involvement so I have to focus on her care and well-being.
Neuropathy/numbness in feet, sinus/nose problems, horrible taste and upset digestion/bowels is now the new standard. I enjoy the days I can and make plans for them when I can. Other days I do what my body tells me I can. I’m busy most of time and enjoy being alive and appreciating all my friends, family and beautiful nature. It does seem unreal at times.
JUST SAW YOUR POST AND EVEN THOUGH IT IS 3 MONTHS OLD, JUST WANTED TO SAY I AM SORRY FOR YOUR SITUATION AND TO HEAR ABOUT YOUR DOG. I TOO AM A DOG LOVER AND KNOW WHAT IT IS WHEN THEY GET SICK. HARD TO DEAL WITH WHEN YOU'RE WELL.... AFRAID TO ASK HOW THINGS ARE BUT HOPE YOU ARE BOTH BETTER NOW. MY HEART GOES OUT TO YOU.
I'm so sorry you're having such a rough time. It must be draining and exhausting. What a nightmare. Good luck this week when you back to the Marsden. Lets hope they can suggest something to help you through this rotten time, sticky3006 xx
I’m so sorry to hear you’re suffering so much. I do hope it’s just a starting blip.
It’s so difficult to find anyone else on this to see how others are managing.
My dates been put back, so now finding out if I’ve got the real thing and starting 8th October, my 6th wedding anniversary, I could think of better things to be doing 🤔
I have been trying different anti acid liquids, but all the Gavascons make me sick.
However, there is an American brand called Maalox, that tastes fine and works a treat, but it has aluminium in it and I am afraid it will rot what few brain cells I have left.
So now, I have settled on Milk of magnesia, and that works okay. Just have to not drink too much as it could have a laxative effect!
I am better this evening, so maybe I will be stringer tomorrow.
So happy that I din’t Have that bone pain!
Thanks for your advice,
Hugs,
Laura
Oh Laura! devastated to read this. I can only commiserate and wish you luck next week at having your doses reduced. I do hope in the meantime you begin to feel better very soon.
I think I am picking up a bit. Thank goodness. Tomorrow I plan to wash my hair. That will be a good test, as I thought about it today, but decided not to try yet.
I am not taking a shower, but just using the shower hose and bending over the tub. I don’t feel ready to climb inside the tub and climb out again.
Hi Laura. What you’re going through sounds awful. I felt like that on frontline but only for about one week out of three. I’m being tested for recurrence and just dread having chemo. Like you I finally feel good despite the cancer’s coming back. I do hope you continue to feel better and maybe they can adjust your dose.
It is a drag. I felt great when I started and suddenly being wrecked is simply weird.
I have to say, for my first recurrence, I did really well on Carbo and Caelyx. I had to go to bed for the first week, but I had three good weeks after that, which made my life a lot more normal.
So, I hope you are okay and if you do have to have Carbo and Caelyx, you can manage equally well.
Hi.... I’m on taxol every 21 days and it knocks me out starting day 3 after chemo till day 6/7. It is cumulative and my dosage has been reduced by 15%. Still feel the same since first infusion. No worse or no better. I’m basically out for about 5 days. All the same exact side effects you’re having. I do feel back to 100% before next treatment and mostly 100% 6-7 days after chemo.
I am just on the weekly Taxol and just two infusions in. After the first infusion I was feeling very similar to what you describe. I was unable to do anything, even dressing and washing were totally beyond me. But on the day before my 2nd infusion I was feeling okish and was able to visit some friends.
I too had prepared myself that this was going to be my new routine but after infusion number 2 I felt much, much better. I was a different woman.
Just hoping the good times last and hoping you have a similar experience.
Love Juliax
PS if it is specifically omeprazole which you cannot take there are lots of other “prazoles” which may help.
Also I have started sleeping on a bed support which elevates my pillows and has changed my life by eliminating 90% of my acid reflux and all for around £20!
Thanks for that! Maybe I too will perk up after the second infusion, although I am also taking the targeted drug, which really has the same list of side effects as Taxol (but no neuropathy).
So I just don’t Know.
I washed my hair today, bending over the tub, not climbing in.
Now I am totally exhausted and I have bee resting for three hours!
I can’t take anything with TAK228 in the “”Proton Pump Inhibitors “ area, so no prazoles of any kind.
My husband bought me some low dosage Zantac, which is Ranitidine, so I am augmenting with this plus Milk of magnesia.
I am good right now, because I am eating Rice Crispies for breakfast with soy milk which is somehow very soothing.
I guess the disappointment is the worse thing, as everyone seemed to indicate that weekly Taxol was pretty manageable, but now i am hearing another side of the story - and definitely experiencing it differently.
Hopefully your team can adjust the sickness meds and even the dose to make it much more tolerable. I know everyone says it it cumulative but my first dose during frontline was the worst. I tolerated the latter ones better. I had my taxol reduced to 75% due to neuropathy and it was much easier. Keep us all updated x x x
My heart goes out to you in fact I couldn't read your text without shedding tears - I was thinking the same thing a few days ago "becareful what you wish for" after reading a few things on people who are in trials. However, it takes guts to do these trials in the hope that finally we "may" find a drug which will finally offer some measure of success and this is what strong women like you do. I am hoping these wonderful nurses can come up with a few answers for you my dear and we are all here and if there is anyone who is entitled to whinge it is certainly you Laura.
Just to say I am into my second day on Caelyx and Avastin and am doing ok - i am trying to be hopeful - still waiting on an answer from COC and reading about HIPEC on trial here, but being used in the States.
A very big hug to you my dear - you are very much in my thoughts.
how dreadfully disappointing for you. Happy to hear you're feeling a little better at the moment. Hopefully The Royal Marsden will find a remedy for your sickness and fatigue.
Looking forward to some better new from you very soon.
So sorry Laura---this sounds so hard--especially the mental aspect (and breathlessness is the worst!) but you say you are feeling better and I know you are systematic so perhaps you will start to know you good days, the day you perk up and stay that way (hopefully) and those wonderful nurses have other tricks up their sleeve. So glad you are keeping us posted as I am so hopeful for you and fingers and toes crossed you will be your old self before you have to do this again! oxoxoxxo
My trial drug made me very sick to start with- retching and throwing up- pretty much took to my bed . However it improved as time went on . I was put on prednisolone when pneumonitis was suspected- all the retching and sicknesses stopped instantly- might be worth asking as steroids are always given with frontline chemo.
I’m sorry to hear that things didn’t go well for you. I think you were counting on this new drug being a game changer. Hopefully you will cope much better with the second infusion.
So sorry to hear that you are so unwell. Let's hope that you can find what works to stabilise things. I've been ok with the Taxol only this week, just the terrible bone pain from the tumour and the cough that I had before. The Taxol neuropathy is creeping back and I'm feeling sick every time I get a whiff of perfume and aftershave, but that's nothing!! Take care and safe travels on Tuesday.
Dearest Laura, so sorry to hear what you are going through. Praying the next will not be as bad for you. I have not done any trail drugs but have been through chemo 4 different times in my lifetime so far. Here are two things I done that really made a difference for me. I had the Neulasta shot the next day after treatment, this shot helped me a lot with side affects. Read up on it. Also I dranked buttermilk to help with upset tummy, please try this it works. You are a strong woman to be doing this trail. Praying the best for you.
Sorry to hear that, yes the treatment can be worse then the cancer. It might be your body getting use to the treatment. I hope you will have relief from these horrible symptoms very soon thinking of you .
I've not been on the site for a couple of days so was sorry to hear that you are going through such a hard time. You are always so supportive of the rest of us that I hope you are getting strength from all the replies and good wishes you have received. I hope all goes well for you tomorrow. I know at the beginning of my 2nd line when I asked about a cumulative effect, the nurse said to me that often it was the worst at the beginning as your body was experiencing the drug for the first time. I do hope that is true for you and that you tolerate a 2nd dose better than the 1st.
You will be in my thoughts tomorrow. Lots of love and hugs Jenny xx
I guess I was just taken by surprise, naively thinking that I was so healthy to start with and my last two experiences seemed so mild, that I thought I would sale right through without feeling sick at all.
So this Taxol/ TAK228 knock out was a shock.
I have actually ordered a wheelchair to get me through Paddington.
Laura did you hear/read about Ranitidine and the fact a US retailer has suspended sales of it in their pharmacies over fears it could be linked to an increased risk in cancer? The Independent was the newspaper. How are you doing my dear? Anne
You have been on my mind all day - so glad you have a friend with you. I imagine you are on your way home and hopefully the nurses have been able to point you in the right direction as far as Omeprazole is or rather isn't - however I agree it does work, but I believe it also destroys our flora - my nutritionist is not keen, but she is not on chemo - I can hear you saying, "but who cares if it works"!! Hope you understand my ramblings. Hugs to you my dear. Anne XXX
Hi Laura, just catching up after 10 days away. How are you now? Hope things are on the up (ready for the next dose 🙄). We were actually in Bath for a day on our travels. What a beautiful city!
Good health to you. Hope the next dose is kinder. 💐😘
Hi, Laura. So sorry...I just saw this. Hoping you are better today. I feel for you so much. It is disappointing when you're feeling so well and then fall to feeling the way you are.
As I always say...you are a strong and positive woman....you will find a way to have your body recover. Sending you much love. Feel better!
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