Due to start day 8 of second round of Vinorelbine but my oncologist has told me not to take them as they are clearly not working. He is referring me to the Marsden as he wants a second opinion or the possibility of a trial before starting me on another lot of standard chemo. I am so shocked that I have had such a bad response to chemo and hormone treatment and terrified that my options are so limited. He is also very concerned about the tumours on my neck fungating (as am I)the new swelling on my chest, and spreading skin mets. The tumours in my lymph nodes in my neck are still growing and starting to bleed a little.
Brief history: marginal response to FEC 2003/4. Taximoxan and Exemestane until secondaries to lymph nodes in neck and elsewere (not major organs)in Aug 2008. Docetaxol Sept to Jan 2009 but by the end of the chemo the tumours were growing again. Put on Femara but again tumours continued to grow and spread so chemo started again in April. Ongoing Zometa although bone mets at least seem to have gone into remission according to last scan.
Has anyone else been told they were resistant to chemo and had any success on a trial at the Marsden? Desperately in need of hope and inspiration.
Thanks
Pat
Hi Pat,
really sorry to read your post can’t help I’m afraid but just couldn’t ignore it.
I think it’s good that your onc is referring you to the Marsden, fingers crossed they can help you.
Good luck.
Love Debsxxx
Oh Pat, I am so sorry you are going through this.
I am not in your exact position, although right now I have most tumours still responding to Tax / Gem, albiet at a reduced rate. But a new lump appeared on my chest nonetheless last week and Onc doesn’t know what it is, scan showed it as an abnormality in chesat bone but only 2mm at present. All we can do it wait for it to grow apparantly.
I really hope you get something positive from the Marsden, by all accounts they come up with some pretty trick stuff when others have run out of ideas, I really hope that they can for you.
Good luck
Nikki
Hi Pat
So so sorry you are in this position.
As you know I also have tumours, obviously growing, in my neck and chest wall area. Its horrible wondering what damage they will do next. The standard chemotherapies have all failed for me now. I’ve had AC, taxotere, xeloda, vinorelbine, carboplatin, gemzar, taxol and second time for vinorelbine.
‘Chemo resistant’ is in some ways a strange choice of words, since actually chemotherapy almost always eventually stops working. We all hope that chemo will reduce tumours, stop spread and yes yes there are good news stories of those who’ve had loads of chemo that hasn’t worked and then suddenly one of them does for many months or some years. These days many oncologists are ‘recycling’ chemos so if they have worked even a bit the first time, they are tried again.
I’d say yes take a second opinion from the Marsden…I did…and may yet again. Yes the Marsden has Phase 1 trials going which may be appropriate and may be what you want to do next if you are eligible. For myself I’ve decided that’s not a route I want to go right now…but I might change my mind later.
Hope? Well I think a good deal about hope thee days, but I don’t equate hope with finding another treatment (which probably isn’t there for me and my cancer.) I just keep hoping my tumours spread slowly (as they have done in the 2 years since my recurrence,) and that I get as much quality time as I possibly can. I know my cancer won’t be cured, I know I will die, but laying all that out on the table I still want just as much of ife as I possibly can get.
I think the breast cancer team at the Marsden are excellent and they are certainly good on the hope and communication stakes…though I’m more cynical about the drugs they can offer…they haven’t got access to miracles. But hope they will give you and your current oncologist some more ideas.
best wishes
Jane
Hi Pat - nothing to offer re wisdom but wishing you well at the marsden - jayne x
Hi Pat and others in the same situation. I have IBC and Yes my cancer is resistant to not only Chemo but radiation as well. I was told to plan my life in shorter increments as after mastectomies and sending my breasts to research I was advised of this and I tell you it does give you a blow and you get this extra will to show the oncologist that you are not ready to be signed off.
Anyway, IBC ( stage 3B) was diagnosed 6 months post ductal cell carcinoma stage 2. First cancer 17 June 2005
I researched the net to find natural medication to boost the immune system and so I still stand as my oncologist questions me on what I am doing as I still am here.
I had taken selenium tablets and blue/green algae after completing a course of liver cleansing tablets to rid the body of toxins from treatment. Bought a juicer that juices the fruit very slowly so not to spoil the most important nutrients, cut down on sugar, refused to use products containing Sodium Laureth Sulphate and walked every day to get the oxygen circulation. Please note before doing all of this I did not sweat. I now sweat- rids body of toxins. Up till now no matter how tired I feel- keep busy.
I was also told that when symptoms return their is no further treatment. So, I am not ready to give up the fight. I have 2 of my 3 boys under 15 that still needs me. Find the Will to survive and go from there.
The hardest part is that no doctor can tell you how long you will live. If they do they have given you a death sentence so you come custom to believe them and your mind starts the process. We all have something to keep us motivated so take your mind of this diagnosis and LIVE> Best wishes and no matter what happens Live each day like their is NO Tomorrow. God Bless to all. Sue- Australia