change of diagnoses

After being told he had cll my husbands diagnoses was changed at the next hospital visit to MZL but he was told it was similar watch & wait then at the next visit he was told he had a tumour and needed chemo. He duly went to hospital the day before chemo and was told he would get R-CVP but when he went in for it the next day was told that the R part was not available (they didn't have a licence) so he got CVP I was annoyed as I feel he keeps getting different information but he didn't want me causing a fuss, he goes back in this week for second treatment and they have said it is all available, is this normal to have a few different diagsoses? and I was wondering if anyone knows of another support site I could go on as I don't think I should be on this site now.

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  • Hi Landlady, I don't know anything about SMZL and it's treatments. A quick scan on Google did mention that it can be associated with or develop into other NHL types in a minority, similar to the way CLL can. I notice your earlier question thread confirmed how hard differentiation between SMZL and CLL can be.

    It must be hard finding information about SMZL but you are also suggesting there is now another condition too. You do not say where you are, this may help us suggest a source of information for you.

    UK facilities such as at Macmillan on-line community have very large communities of different lymphoma patients. A post to the community may elicit responders with relevant information and support for you. I also noticed when Googling that a few SMZL have been in touch with the Cancer Research UK on-line community over the past few years.

    Macmillan provide a range of services to support all cancer types you can telephone their free phone and talk to trained operators who will be able to support and signpost you qualified sources of information.

    Telephone 0808 808 00 00

    The website macmillan.org.uk/Home.aspx

    Also the Lymphoma Association who support all with lymphoma.will be able to provide you information and connect you with a buddie or support group. you can talk to one of their support officers on: Freephone 0808 808 5555

    The website: lymphomas.org.uk/

    Here is the link to Macmillan on-line community groups: community.macmillan.org.uk/...

    cancer types groups community.macmillan.org.uk/...

    There are two active NHL support groups.

    If you wish to post to the community you will have to register first.

  • Thank you so much for all these contacts it's much appreciated

  • A couple of things.

    It is important that your husband be tested for Hepatitis B and C before Rituxan.

    You say MZL do you know which type? Splenic (SMZL), gastric, nodal etc...

    Here is the NCCN guidelines, you can register on the site then download it to

    your computer.

    The MZL start on page 40, or see directory page 3.

    nccn.org/professionals/phys...

    ~chris

  • They now say its non hodkgkins lymphoma I'm not sure if it's splenic or nodal I'm afraid I don't have a lot of confidence in them as they have changed diagnoses so much and I feel they should have noticed the tumour when they got the results of the scan not a month or more later.Why is it important for the hepititas B&C tests before Rituxan

  • Landlady's earlier thread: goo.gl/jPYiZ when CLL diagnosis was changed to CD5 positive splenic marginal zone lymphoma. Landlady has this now also changed?

  • yes they now say its non hodgkins lymphoma

  • Hi my advise is to make a fuss otherwise you will not get answers. Try to get to see a specialist if they say its not possible ask to speak to the head of the management team immediately. It is not a matter of being confrontational but of standing you ground. Good luck

  • Thank you we saw a different doctor today and she explained things much better and gave us a bit more hope. When I asked about the hepititus test that cllcanada suggested she said it should have been done but when she checked the notes it wasn't but has sorted it out, my husband is having the full R-cvp tomorrow but the blood tests are looking good so far so we are hoping that he has no adverse reaction. I am going to ask to stay with this doctor Thanks again for your concern

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