Has anyone been on weekly taxol?

[ScardyCat40]

Since I finished chemotherapy last year my CA125 has been increasing and CT scans are showing signs of progression. I have a small lump on my tummy which is one of my cancer nodules. I have been on letrozole for 10 weeks but my pain is increasing and yesterday whilst in the supermarket buying my weekly shop I felt dreadful really tired and clammy - I have not felt like that in ages.

I am back in clinic on 10 April if my CA125 is up then I will be starting chemotherapy. Letter to my GP from the doc I last saw in clinic has suggested single agent carboplatin. I have had carboplatin twice before so this time I was expecting something else. I want to try something else as well I was thinking of weekly taxol but I am anxious about the side effects. However I would really like to either stabilise my disease or even better some sort of remission.

I have low grade disease and weekly taxol is one of the alternative treatments on the recent clinical trials for Mek inhibitors. I tried to get onto the milo study last year but was told my nodules were too small. Many doctors have told me to view this as a good thing I know they want me to remain positive but in my mind having small nodules doesnt stop them from growing or making me feel ill.

I recently also found out that another reason I did not get accepted onto the study was because the study team felt that after reviewing my original tumour they felt it didn't fit the profile of low grade disease. I don't know what this means I only know that the hospital where I was getting my treatment are adament that it is low grade and I also had a second opinion that confirmed my original diagnosis.

I would like to hear about anyones experiences with weekly taxol.

[doodoolatrice]

Hi ScardyCat40, I'm not able to offer you any advice as I have no experience of Taxol. I hope you get the answers you are looking for and in the meantime a big cyber hug from me, love Kerry xx

[ScardyCat40 in reply to doodoolatrice]

Thank you and back at you

[zuzana]

Hi, im on weekly abraxane because had reaction to taxol but both comes from same family. Im on it for 10 months now and seems to keep disease under the control even with some shrinkage. Mind u I do have more disease in body as u so its hard to give advice. No side effects for long time only now i started to have muscle aches and been tired. Hope i did help

Best wishes

Zuzi x

[ScardyCat40 in reply to zuzana]

Thanks I know they have been offering weekly taxol, topotecan, and caelyx on the mek trials for mek inhibitors

[Hertsmum]

Hi I had weekly taxol along with the carboplatin 3 weekly so the main side effect

I was aware of from taxol was hairloss but kept hair on head using cold cap ... Was told to expect peripheral neuropathy but did not get any to speak of. Extreme fatigue as treatment went on but that seems to be across the board for most chemos ! Was told I'd have had worse side effects if I'd had the taxol 3 weekly but going every week was draining in itself, not going to lie. I hope you get to talk through all the options with your oncologist to help you with your decision.

Madeline x

[ScardyCat40 in reply to Hertsmum]

I think I was offered that option for first line as part of a trial 4 yrs ago. I can only imagine what it was like.

[TinaB1]

Hi there ..I find it astonishing that you've now been informed you haven't got low grade. I think it would be helpful to know what type it is. I know there are lots of categories and sub-categories. I have low grade with high grade features, but it's still treated as low, I.e. the same treatments in general as high. However, it's so important for trials to know for sure because the sponsors/academics plan the trials by pathways. I was thinking that just because single agent carboplatin isn't on the alternative list for the MEK, it doesn't mean to say it won't work. I think the trial is probably designed with relapsed disease in mind hence the combinations.

[ScardyCat40 in reply to TinaB1]

This was the opinion of the study team for the milo study only. My consultant and my second opinion both agreed I had low grade during diagnosis I was told I had some high grade disease but my cancer has always grown quite slowly and my nodules are generally small.

How are you doing Sue?

[TinaB1 in reply to ScardyCat40]

Hi L ..I'm getting by and feel much happier in myself. I don't know why.

[Meryl1]

Hi, yes I finished weekly taxol 3 weeks ago and my oncologist confirmed my scans are clear and my CA125 is back to normal (500 on start of treatment) . And with the Paxman cold cap my hair was not only saved, it grew! I was diagnosed 3c 8 years ago at 45, several recurrences and remissions, and this was the least symptomatic chemo regime I've had.

I also had a small cancer nodule on my tummy - now gone. Best wishes and hugs for your future treatment, Meryl x

[ScardyCat40 in reply to Meryl1]

Good news I am really pleased for you

[Bohunter58 in reply to Meryl1]

What is a Paxman cold cap?

[ScardyCat40 in reply to Bohunter58]

Its a bit like a special rubber cap (bit like a swimming cap) that they infiltrate with ice cold water

[francescahannah]

I had weekly taxol last year add 5th line chemo and it was the easiest I've had in terms of side effects. I lost my hair and towards the end I began to get a little neuropathy in my get but nothing bad. I hardly had any nausea and was able to get on with my life pretty well. It also worked well although my cancer had grown again so I've just started more chemo but I preferred taxol to carboplatin and it worked better. Good luck

Francesca x

[ScardyCat40 in reply to francescahannah]

Nice to hear from you Francesca. Good luck with your chemo.

[Di16]

I finished weekly Taxol in January, & found Taxol easier to cope with than the Carboplatin I had previously, even though it meant treks to Cambridge almost every week. I didn't have many side effects. I was tired, but had no nausea at all - I have a supply of unused anti sickness tablets in the bathroom cabinet. I didn't use cold cap, & lost quite a lot of hair, but never lost it completely, & it's growing back now.

Di

[ScardyCat40 in reply to Di16]

Thanks I am glad you found it easier to cope with. I dyed my hair teal for OCAM so not against losing my hair.

[thesilent1]

Hi, I have no experience of weekly Taxol so I'm afraid I cannot offer help re that. Perhaps you didn't meet the trial criteria because you also had some high grade disease. I understand they are quite strict about criteria when it comes to the trials.

Anyway, just want to wish you well for whatever treatment you get. Ann xo

[ScardyCat40 in reply to thesilent1]

Thanks for your reply I guess I will never find out.

[TinaB1 in reply to ScardyCat40]

I have low grade with high grade features. It's very rare to have coexisting high and low. Low grade can get the attributes of high but still be low as in its pathway. That's why I'm surprised at its re-classification by your latest bods L.

[ScardyCat40 in reply to TinaB1]

It wasn't my lastest bods S it was the opinion of the milo study team - I assume by that they meant the team at the drug company as thats where they had to send a sample of my original tumour. This was from last year.

[TinaB1 in reply to ScardyCat40]

It's a strange situation isn't it. I wonder how they'd classify mine? I have another problem as in they've calcified. I'm not sure what that means exactly and I'd be interested to know what others know about calcification.

[ScardyCat40 in reply to TinaB1]

So would I as I have a lot of calcification and I read somewhere it is more common with low grade. I am not sure either I thought it mean old disease if I remember I will ask at my next appointment. Or one of us could go onto the Target site and ask an expert?

[TinaB1 in reply to ScardyCat40]

I've just it so will let you know.

[ScardyCat40 in reply to TinaB1]

Ha ha so did I

[TinaB1 in reply to ScardyCat40]

The experts say they don't know why calcification happens. There is a small scale study which shows that it makes no difference to outcome but the study is not wide enough to be entirely credible. Calcification is more prevalent in low grade but happens with high grade too sometimes.

I think the significance of mine (from my doctor's point of view) was that it couldn't be removed from the small bowel mesentery. Now I understand.

[ScardyCat40 in reply to TinaB1]

I got the same response as well. Oh well