my first blog

3 minute read time.
wow, didnt think i would be blogging again and definitely didnt expect to be doing so on this topic. well as this is 'my first blog' i think i should tell whoever reads this a bit about me and the journey i have been on so far. well i am a 20 year old student at plymouth university studying human biosciences and have had a full and amazing life so far (even going through this doesnt stop me from thinking how amazing life is)from living abroad in dubai to taking a gap year and becoming a divemaster and scuba diving in some amazing places over the year. now for my cancer story so far, sorry its quite long but i only decided to join this site recently: after feeling unwell for the summer of 2008 and and seeing many specialists for scans, ultrasounds, blood tests, endoscopes etc etc (with all resutls coming back negative or normal) i started university in september 2008. Still feeling generally unwell and losing weight i discovered a lump in my neck in october. Feeling that this was not right i saw several doctors who all told me it was an enlarged lymph node and it was because i was a student (a line i have discovered that many doctors love to give to explain away symptoms and illnesses in people like me), until one believed me that such a swollen neck was not normal and sent off for tests for glandular fever. however he told me he thought it was 99% likely to be hodgkins lymphoma. I got the preliminary diagnosis on 15th december but was told i needed a CT scan and biopsy to confirm but they could wait til after christmas as i was going on holiday with my family to dubai. I decided the best course of action was to have the biopsy and scan while i was abroad in dubai with my family around me rather than in january where i would be alone at uni. By the 2nd of january i had the diagnosis confirmed as grade 2B nodular sclerosis Hodgkins lymphoma (for any who dont know: grade 2 as it was in 2 locations (neck and chest) but remained above my diaphragm and B as i had the secondary symptoms of itching and night sweats). I returned to university in jan and decided that i would continue with my course and my life while i was being treated. After a PET scan, ABVD chemotherapy was started on the 23rd jan, and occurred every 2 weeks on the friday for 6 months (6 cycles). i started losing my hair after the 2nd session and decided to take control and shave it off. my second PET scan was after 3 cycles and showed a reduction in the cancer but that i still had quite a bit there. another 2 cycles of chemo, first year exams, end of first year partying and then i returned home for the summer. all seemed ok and i was travelling down to plym every 2 weeks for chemo which was seeming to go well. until i found another lump in my neck that hadnt been there previously. not trusting 'unlikely' and 'probably' not disease i was very anxious to get the results of my 3rd and most recent PET scan on 10 july after having finished all chemo on 26th june. I think i knew in my heart of hearts what it would show but the scan has now confirmed it. I still have several areas of disease and hotspots, including the lump in my neck, and am now waiting for what the docs decide to recommend next for me. so, thats my story so far, minus some details as it was already becoming more of an essay than a blog post, but i feel i also need to give the background info so that any future blogs (which i am predicting will be shorter) will make sense. peace and love to all x.megz.x
Anonymous
  • FormerMember
    FormerMember

    Hi Megz,

    Your story sounds very similar to mine so I know how it feels for everything not to be ok at the end of treatment. I found it very frustrating and almost worse than the initial diagnosis.

    I was diagnosed 2A NS Hodgkins in Septmber 08 and started ABVD in October 08. I had a clear PET scan after two cycles and a further clear CT scan after four cycles. Finished six cycles of ABVD on 27th March and had a CT at the beginning of April. There was something showing on the CT scan which my doc thought would be fine but they would do a further PET scan to be sure. It was at this point I said that actually I thought the lump on my neck was bigger and after a brief hands on exam I think she thought so too.

    I am now having high dose chemo and a stem cell transplant which will be followed by radiotherapy.

    I hope they decide soon which treatment you will be having next, I think waiting for information is actually worse than the treatment.

    Wishing you all the best.

    Ginger

  • FormerMember
    FormerMember

    Hi Megz,

    Your story sounds very similar to mine so I know how it feels for everything not to be ok at the end of treatment. I found it very frustrating and almost worse than the initial diagnosis.

    I was diagnosed 2A NS Hodgkins in Septmber 08 and started ABVD in October 08. I had a clear PET scan after two cycles and a further clear CT scan after four cycles. Finished six cycles of ABVD on 27th March and had a CT at the beginning of April. There was something showing on the CT scan which my doc thought would be fine but they would do a further PET scan to be sure. It was at this point I said that actually I thought the lump on my neck was bigger and after a brief hands on exam I think she thought so too.

    I am now having high dose chemo and a stem cell transplant which will be followed by radiotherapy.

    I hope they decide soon which treatment you will be having next, I think waiting for information is actually worse than the treatment.

    Wishing you all the best.

    Ginger

  • FormerMember
    FormerMember

    Hi Megz

    Just wanted to say that with a smile and attitude like yours, you must have a chance in beating those 3rd scan results back!!  I look forward to hearing that your 4th scan results are more of what you want to hear.

    Stay positive girl, I am constantly hearing from everyone that it helps, Soooooo I have it coming out of my ears - there's more than enough for me and my husband so I'm sending your some electronically!!!!

  • FormerMember
    FormerMember

    Hi Megz

    Just read your essay! I have recently been diagnosed with Hodgkins Lynphoma and am at a loss as to what I can expect. Your blog has helped me in understanding a little more.  My problem appears to be in a much earlier stage of development. No lumps etc have been found and my bone marrow tests have produced positive results (no danage)  I have yet to hear the results of my scan.

    I really hope that your treatment will be successful.  Thank you for posting your blog, it has been a help to me.

  • FormerMember
    FormerMember

    Whatever happens, don't despair! Our daughter has been all the way down your route, ABVD, rescue chemo and Stem cell transplant followed by radiotherapy, that all finished in early 2006, when it was discovered it hadn't zapped it all away, she then had a trial drug for 12 weeks, which kept her 'stable' for over 2 years.

    She has now got some recurrence and spread too, into her spleen, but a new trial drug is coming, she has opted to go for it, its an antibody with radiation, from the Royal Free in London. So there is still some hope even if the gold standard treatments haven't yet done their stuff. And, by the way, she is actually very well, sounds daft I know, but you'd never think she still has active cancer!