Immunotherapy

[caitesnan59]

Hi, I am new to this site, I was diagnosed in July 2014 with NSCLC. I had four cycles of Cisplatin/Pemexetred which shrunk my main tumour by 75% and the cancer dissapeared from all the lymph nodes it was in. I was on pem maintenance for 16 months which kept everything stable. In April this year it was found after a scan that it had stopped working and started growing again. I was offered Docetaxel/ nintednib but asked if i could have either imunotherapy or some other targeted therapy instead. I was sent to the Christie in the hope of joining a trial but was told on arrival that the trial was full. I was told that there are a couple of trials i can be put on a waiting list for but they need a biopsy sample from my main tumour. As this is only 0.9 centimetres at the moment my doctor is asking both the radiographers at Leeds and at the Christie if anyone is willing/able to take a biopsy from something so small !!

My oncologist also said they were waiting for a new immunotherapy drug to be released for general use but i forgot to ask what it was called. she is hoping to have my biopsy done in the next two weeks as she said she doesnt want to wait longer than six weeks before starting me on some kind of treatment.

I am feeling sad at the moment as i really want the imunotherapy rather than the chemo combination and because i dont have private medical insurance and no savings to pay for the immunotherapy then i cant have it.

I just feel that these new treatments are sat on for too long because of the cost and should be available to all. What are other peoples thoughts on this.

[waterfd]

I agree with you whole heatedly. All the research and the time it takes to get to market is in my opinion far too long for this condition. When it is finally available some bureaucrat has to decide if a person with any condition, not just cancer, is worth saving due too cost. In the long run I'm sure it would be cheaper. This is one of my pet hates I'm afraid, life is precious and limiting trials to small numbers to me seems counter productive, especially with life threatening conditions. This type of therapy was not available when my wife scummed to this disease.

[jass070896]

I had targeted treatment (Iressa) which eventually stopped working after 17 months. I was hoping to start a new drug trial but tumour sample was rejected. I did go onto Docetaxel instead because oncologist didn't want to risk waiting any longer and I entirely agreed by this stage. Had 6 cycles which were gruelling but very effective. Also had 30 days radical radiotherapy to follow and this finshed March this year. So far, so good and I'm gaining strength every day. Don't lose heart, although I do agree with the comments about new drug approval, which is far too long and cumbersome.

[Genie123]

Yes I agree we all should be able to get these new drugs, if we are compatable to take them, life is precious to every one rich or pour, the farmicutcle company's are gready, for making the amount of money they do on drugs.😞

Jean

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI caitesnan59

Your sadness and frustration is understandable in not having the drugs available that you may need.

It is good you will have your biopsy soon, as this will decide what treatment option is best for you. It looks like you have a very attentive Oncologist who will discuss your options and give you the best care.

In regards to the clinical trials, ensure you have left your contact details with Christie, new and upcoming trials (which are sometimes kept confidential) must have Ethics approval before they start; therefore it would be good that they have you on file in case a suitable trial comes up.

You can access information on Chemotherapy/Immunotherapy on our website roycastle.org , you can also request any of our booklets which we will post out to you.

Alternatively you can call our Free Helpline number on 0333 323 7200

if you wish to discuss anything.

The Royal Castle Support Team