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the drugs which work for us

10 REPLIES 10
mrsblue
Member

Re: the drugs which work for us

Had encouraging news today, latest bone scan shows slight improvement, so I continue with letrozole. I am aware that often these hormonals stop working but again, it varies from patient to patient - many factors e.g. age, HER2 status??

diane1w
Member

Re: the drugs which work for us

Hi Jane

I too am triple negative but unlike yourself i dod not repond well to taxotere, I could tolerate it ok - the frist 3 cycles showed good shrinkage but after another 3 it had slightly progressed. I was worried sick at the time because they kept referring to this as the gold of all chemos. I am just about to start my 3rd cycle of Xeloda so to soon to tell. I had a great reduction on the 1st cycle but I was in hospital and really ill so they had to cut my dose by 50% for cycle 3 and have put it up by 20% for the 3rd cycle.

So i think it is fair to say that we are all so different, I don't think to much about how long a drug is going to work for it would just depress me when it stops working. I basically live in 6 week chunks at the moment in between scans. i have been fortunate enough to get on a trial so that when the Xeloda stops working I will be transferred to a trial drug (Sutent). That's the drug that NICE have just knocked back for kidney cancer even though it prolongs their life considerably. Unfortunately the trial I am on, the criteria is that you have only had one chemo drug after being diagnosed with secondaries. It is specifically for triple negative patients which is nice to see because i sometimes feel that we are forgotten about by the medical profession and the slow progress they seem to be making in finding something to slow our cancer down other that chemo. One woman on the trial has a year on Xeloda before progression occurred,

I'm just hoping I manage okay with them putting the dose up, I wouldn't like to go through the whole two weeks in hospital thing again, not for a while anyway!

Diane

xx

Jennywren
Member

Re: the drugs which work for us

Anti-metabolites (capecitebine) is the one for me. Have always wondered if I had a wonky metabolic system. Hmm... will go and do some research and see which other drugs fall into this category, for future reference.

Jenny

dippykate
Member

Re: the drugs which work for us

I seem to have a good response to any chemo but then it stops working and my cancer grows again really quick.
As my lump was big, I had FEC x6 which seemed to shrink my cancer completely and 2 weeks after last dose, it was barely visible but 2 weeks later, the lump was back to its original size and so were the lymph nodes. My onc feels that the anthrocyclines don't work for me and now my heart couldn't take any more.
The taxotere seemed to keep my cancer away for 6 months which is the longest I've been off chemo since april 05.
When it returned, I had a spectacular response to vineralbine and hope to use that as my last option. The response only lasted 8 weeks before I was so breathless that I went on xeloda. This worked for 9 months only but the response especially in my lungs was not so good and it was the dexamethasone that kept me going through summer 07.
I then had gem/carbo and did have a good response - I was not oxygen dependent anymore and could swallow again. I was on that from dec 07 to may 08 when it stopped working and I couldn't swallow again.
Due to the sudden appearance of my liver mets - they weren't there 3 weeks previously and suddenly I was yellow - I couldn't start weekly taxol till mid august. I've had 4 doses so far and thought it wasn't working but suddenly now I can swallow again - hurray- and i think my breathing is improving. My liver function tests are improving as well.
So I seem to be different in that apart from the anthrocyclines do not work but everything else does but for limited times and no respite between chemos.
I think we can see from these forums how different we all react to chemos and presumably that is why there seems to be no magic answer or even hint of a 'cure' as bc is so complex.
Kate

JaneRA
Member

Re: the drugs which work for us

HI Amber...no I didn't get good results from carboplatin..

Jane

amberD
Member

Re: the drugs which work for us

Jane I think that carboplatine worked the best for me, out of the many many chemo's i have had - there is back up from trials that this works for people with the BRCA gene, I have a very strong family history of BC (gene un known) so thats my theory anyway......I also dont know anybody who has great results from carbo (apart from you now)
I will agree with what your DR said at the marsden, I'm under the care of proff smith and have noticed he has started to group together various chemo's ......presently on weekly taxol because he thought taxotere 3 weekly worked well before.

mrsblue
Member

Re: the drugs which work for us

Letrozole has worked for me for 2 years, as 1st line treatment, never had chemotherapy. But seeing onc tomorrow for results of bone scan, + bloods (tumour markers) so hoping the letrozole is still working!

belinda
Member

Re: the drugs which work for us

Hi Jane..Can we add any hormonal treatments to this list?
Tamoxifen worked well for me for 15 months, Arimidex was even better, 2 years and 7 months but Aromasin only worked for a couple of months.
Capecitebine is working for me, so far, just completed 7 cycles but my TM's although stable are higher on chemo than they were with any of the hormonal treatments.
Belinda..x

Kay123
Member

Re: the drugs which work for us

Hi Jane

Not sure I can add anything but am very interested in how we respond to these different drugs and what that might tell us. As you know I've just had a fairly spectacular response on capecitebine but taxol and avastin did not work so well - did shrink the tumours but grew again (plus some) virtually immediately.

Also glad to hear that you feel more confident and optimistic (albeit cautiously) about the response you may get on taxol.

Kay

debsincornwall
Member

Re: the drugs which work for us

Hi Jane,
as I think you know I had good results with capecitabine I was able to be on it for 2 years with good shrinkage keep my hair so felt good about myself had the poos for 2 days at the end of each course so felt like I had had a posh detox!
Taxol made me very tired on 2nd and 3rd day but again I had really good shrinkage of liver tumours and I am enjoying a chemo break. My fingers and toes have returned to normal I can now feel them. Hair 1/2inch grey and sort of George Clooneyish (according to my daughters).
I think we are all so different as are our reactions to the treatments.
Glad you are doing o.k. on taxol.

Love Debsxxx

JaneRA
Member

the drugs which work for us

Recently when I got my Marsden second opinion I was really impressed by the way the guy analysed my cancer's response to the plethora of chemotherapies I've been on. He rightly identified that I didn't repsond to anthracyclines (AC 6 doses neo adjuvant primary...lump shrank then grew again) xeloda or carboplatin. BUT...I did have over two years of remission on taxotere and then when I had vinorilbine in combination with xeloda there was the best improvement since my regional recurrence happened in April 2007. However xeloda alone did nothing.

So the conclusion was that vinorilbine and taxanes are the drugs my cancer responds to most...and interestingly both work in a similar way,attacking the mitotic spindle of cells (not quite sure what that is...but take his word for it.) SO now I am cautiously optimistic that taking taxol may have a reasonable response...feel much more confident than I did when I just felt chemo after chemo was being thrown at me to no avail. So I'll do taxol and then the next and possibly last option outside Phase 1 trials will be a return to vinorilbine.

Has anyone else found m their cancer responded well to a taxane AND to vinorilbine? Or the reverse? I notice loads of people getting good responses with xeloda which seemed to be hopeless for me, so probably the way xeloda works is the key to what attacks your cancer if it is working. Platinum drugs are often said to be good for triple negative cancers but not for ine...which again goes to show how much triple negatives are not one but many sub types.

Interested in others' analysis of the drugs which are working (for a while) for you.

Jane