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Renal cell carcinoma metastatic to bones

Hanky
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Hi my name in Patricia.  Not sure if  I should be writing on this forum.  I am a patient in another hospital a few miles away.  I have had 2 years of immunotherapy  avenlumb    and medication Axitinib I have developed two new tumours in my arm and just received a call to say they are cutting back on immunotherapy and my oncologist has said I cam move onto medication and finish with immunotherapy.  The side effects of the new medication is bone pain of which I have so much already.. the new medication is called   Lenvatinib  everolimus followed by cabozantinib.  I  am in this position as my first scan was not read properly and I had to insist that something was wrong.  When it was read properly I was told it had spread fast and was all over my body.  Are there any trials or other medications available at Southampton?  Is there a consultant specialised in my cancer with whom I could obtain a second opinion?

thank you.

  • Hello Patricia and thanks for posting

    I'm sorry to read about your situation. It sounds like you are going through a lot It's understandable you wanting to explore all your options and get a second opinion, especially considering the challenges you've faced.

    I appreciate further bone pain is a major concern with the new treatment that your team are recommending and it's important to discuss this further with them. There are often options to manage side effects more effectively, including being referred to a pain specialist team who can offer specific advice on managing your bone pain.

    We are often asked about trials or new medications and we usually suggest patients discuss this with their specialist.

    We have information about taking part in trials and a clinical trials database on our website, which you can look at. This lists the trials that we are aware of and have permission to put on the website. You can search for renal cancer trials on our website.

    Our organisation help to fund trials, but we are not directly involved in recruiting people to participate in them. This is done by the doctors and nurses working at the hospitals involved in running the trials and a medical referral is required for anyone to be considered. So I'm afraid I can't put you on to a trial, you would need to talk to your doctors about this. 

    Most trials will exclude people who are currently having treatment, or who have had other treatments in the last month or so. For each trial entry on our database there is a “who can enter” box which explains the entry requirements for that particular trial, and at the bottom you can read where the trials are taking place (location).  

    I'm afraid we don't recommend individual specialists or hospital. Your current specialist team should be able to advise you further on this. Some people like to ask for a second opinion with another oncology ( cancer) team as they want to feel that they have left no stone unturned. You could ask your GP or current specialist to refer you. We have some general information on our website about getting a second opinion.

    I hope this reply is of some help. Give us a ring if you would like to talk things over with one of the nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

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