Here we go again

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Hi all, been a little while (again) since I posted . Every thing was going well then I noticed another lump on my left thigh when we were on holiday in Spain. Had an emergency appointment with my consultant at Barts , she thought it was definitely the NHL back again had a biopsy results came back positive. Have to go & have another CT Scan & PET Scan tomorrow 17th May then see my consultant next week to discuss next move. She did tell me about a very interesting treatment she was putting me forward for last time I saw her it's called CAR T . Sounds promising what they do is take your blood from one arm & take out the Tcells then put blood back into the other arm. Sounds a bit like a stem cell transplant but with T cells instead. They then manipulate the cells in the lab multiply them then give the cells back to you. This treatment has been o.k.ed at some hospitals by the NHS and I will have to go to University College Hospital in London. I'm really cheesed off about the NHL coming back for the fifth time & fed up with having to keep going up to London so often as it can be a three hour journey each way. However I'm still keeping positive & the treatment I have had so far from both the hospitals has been excellent & the staff very caring . Will post again when I have more information.

Lyn x

  • Hi Lyn , not great news you are coming back with but my “what’s next” mantra looks like it has come up with a further route for you to follow.

    Great that your team are on the ball and let’s look for this to do the job for you.

    I totally understand the travel issues, we were the same with our trips from Inverness to Glasgow but if this is what it takes then grasp it with both hands.

    The further treatments are developed the more scientific it gets.

    Keep us up to date with progress ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike, always nice to hear from you , yes must keep on being positive & not let this nasty disease get you down . The way things are going with treatments at the moment there another one just around the corner so mustn't give up . Do feel a bit down at times though as it's about a year since I lost an old friend to cancer & just a month since I lost another friend then only yesterday found out a lady who started up a cancer support group on our local Facebook page has just passed away although I never met her we had been chatting on fb for a while, it's still very upsetting.

    well must get back to being positive hope I haven't depressed you . Right putting on the smiley face again. Bye for now Lyn x

  • You will never depress me Lyn, we meet cancer in many aspects of life and from my point of view it makes me even more grateful that I am still around.

    Kissing heart

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi, sorry to read its returned, is it the marginal zone that's flared up again? 

    Just wondering have they ever considered a stem cell transplant? if you do go down the car-t route the have been 2 or 3 on the site who have had it in the States and a couple who have had discussions about it bit not updated. Also on another site I moderate someone has posted the full journey so far about their husbands experience he at around day 100 now I think and I can direct you there if you think it may help, but I will add a warning that its warts and all and not easy reading at times, so depending on how you do approach it something to think about.

    Whats really exciting (sad I know) is the next generation of car-t is already in development and has much low toxicity issues from initial reports so the future does look good as far as new treatments go.

    Do let us know how you get on and what the plan is.

    good luck

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi John, thanks for the reply. I was considered for a stem cell transplant but I've never stayed in remission for long enough so they ruled it out a couple of years ago. 

    I don't know if it's marginal zone that's flared up again will find that out when I see my consultant next week. Thanks for the offer to direct me to the site you moderate on , I will decline at the moment but I'll keep it in mind.

    Will keep you updated. Lynx

  • FormerMember
    FormerMember in reply to Lolla

    Hello Lotta,

    I am relatively new to this community but I have a bit of knowledge about CAR-T therapy.  One thing to ask is 1) what is the CAR-T track record of the London group.  2) Are they closely linked with other CAR-T cell physicians across the world?  3) What are the percentages for success at this point, both in London as well as their linked colleagues.  Like anything else- experience and success  are the two things to look at (eg don't pay a bricklayer to paint your home).  

    Get background information on the principal physicians involved.  CAR-T is in its early stages but they are getting better results yearly. The longer we can wait the better it will be.  How urgent is your treatment?  Today, there have been people a heartbeat away from death that are now healthy, but there are failures also.

    My advice is to ask your list of questions and find out if this is the premiere group in UK for your NHL and ask how urgent is your treatment and why. Hope this is of some help.

    Warmest wishes,

    Millie

  • Hi Millie,

    Thanks for the reply I have jotted down the questions you suggested & will definitely be asking them along with quite a few of my own. Have not had an appointment date for UCH yet hope it's not to long before I get it. My scans went well yesterday and I hope to get the results next Wednesday when I see my consultant at Barts. 

    Thanks again Lyn x

  • FormerMember
    FormerMember in reply to Lolla

    Hello again Lyn,

    I’ve been poking around the UK health system and the  University College Hospital in London -the institution is one of the best in UK.  

    Still go in with your questions especially about pluses and minuses of treatment, what to expect  during and after treatment and success rate. 

    Wishing you great success! Please keep in touch.

    Millie

  • FormerMember
    FormerMember in reply to FormerMember

    Hi all, I have relapsed dlb cell with follicular underlying. Leg symptoms started in August 2018 during my first year of rituximab maintenance. MRI to spine but after physio referred me for nerve conduction test showing sciatic nerve compromised, pet scan confirmed a long lymphoma mass in the back of my thigh. Dhap only partially successful. Further pet showed mass on outside of small intestine not responsive and growing. Surgery to remove on 16 may.... radiotherapy starts on leg 28 may.... hopefully I'm still a candidate for autologous stem cell. My consultant mentioned car-t but informed me it would be at Kings, london, why not ucl, I wonder?

    Still baffled that it came back in such an odd place and have lost the use in my lower leg

    Regards, Lynda xx

  • Lets look for this next step to do the job ((hugs)) Lynda.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

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