Hello again, fancy seeing you here! It’s now just under two weeks to my next appointment. Once I get the results I can put together a graph of progress… What fun that will be.
Joking aside, if the results remain the same I will be very happy. I can’t tell if it’s progressed without them and I think the fatigue is a bit of a red herring, I’ve had periods in my life when I’m tired before. These periods seem to tie in with times I am Ill and an infected wisdom tooth would certainly fit that bill. It could be tired when I am I’ll because my less than perfect immune system is working hard on solving the issues and doesn’t give my body as much energy for table tennis or long walks.
Anyway, the reason for this blog is not my musings but also to provide information. It has been nine months since diagnosis and although I did a little bit of research on the condition at the time (you know like a day or three of hours) I haven’t looked since. If you find medical research dull, look away now 🙂
Medicine can move quickly and there have been two or three studies published in that time which I have just researched.
As one of the purposes of this blog is to share information and raise awareness it would be rude not to share!
I’ve got a lazy lymphoma when I last checked (it’s difficult to get it out of bed before 12) and a study I have recently found (although published in 1979)_about long term prospects on indolent lymphomas. (http://www.lymphomation.org/watchfulwaiting.html)
‘For all 44 deferred patients, the median time before requiring treatment was 31 months, and there have been 19 patients who have not yet required therapy for periods of 3 to 104 months’
Further there have been reports of indolent lymphomas remaining stable for as long as twenty years, but it should be noted that most patients received treatment within 1 to 3 years of diagnosis (referring to a left arm bias in the graph, see the link on my post https://spleniclymphoma.com/2013/07/15/my-spleen-it-hates-me/ )
Another thing, which I may have not flagged up sufficiently in the past, is that when treatment time does come the preferred option is Rituximab. This can be delivered with or without chemotherapy.
Rituximab (trade names Rituxan, MabThera and Zytux) is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders.
Another study, which came out late last year (so after I was diagnosed), is around the treatment of my condition with Rituximab. I have grabbed the abstract below (thank you http://www.ncbi.nlm.nih.gov/pubmed/23345547)
Treatment of splenic marginal zone lymphoma (SMZL) patients is not standardized. Recent data suggest that rituximab is highly effective and could be considered as initial therapy.
To assess the efficacy of rituximab monotherapy in a large series of patients with SMZL and compare these results with splenectomy results.
The studied population included 85 patients. Fifty-eight received rituximab at a dose of 375 mg/m2 per week for 6 weeks as induction followed by maintenance at the same dose every 2 months for 1-2 years, whereas 27 patients were treated using splenectomy only. (see below for an exciting graph)
So it looks like I might the right decision in not getting my spleen yanked out.
What is also interesting is that the patent for Rituxmab expires in 2015. This means anyone can then make it and research on it. I hope this develops the drug further and means there will be better versions, or even wholly new drugs, by the time I need treatment.
More info here about delivery. Sounds like it might be a much better delivery system than sitting having intravenous chemotherapy. I could be pro that, as I get bored sitting around.
How is rituximab given? (https://www.lymphomas.org.uk/sites/default/files/pdfs/Rituximab-and-other-antibodies-in-the-treatment-of-lymphoma.pdf)
Rituximab is usually given in a day-care unit. If you are having rituximab together with chemotherapy, it is usually given just before the chemotherapy drugs on day 1 of each cycle. Until now, rituximab has been given through a drip into a vein (this is known as an ‘intravenous infusion’). The first infusion is given slowly, over 4–5 hours. Remaining doses can be given more quickly, over about an hour, if people have not had a bad reaction previously.
In the future, it seems possible that rituximab will also be given by injection into the layer of fat just beneath the skin (known as a ‘subcutaneous injection’). This means each dose can be given in about 5 minutes. Initial clinical trials have suggested this new method gets enough of the drug into the bloodstream, without causing more side effects. Further trials are now checking that the lymphoma still responds as well as usual when rituximab is given this way.
This became much more sciency than I had planned for, but I suppose this is more for the fellow sufferers than for other people who like my more in depth thought exercises (see https://spleniclymphoma.com/2014/03/05/what-happens-when-you-die/ ) or indeed just blarney about life and my book.
Keep well people, I’m trying to 🙂
Sam EGGLETON said:
I’m due to start a rituximab therapy.hopefully this will take care of the AIHA and my new lymphoma hot spots. I’m in a huge dip at the mo so the chance of a better quality of life is welcomed. I am sleeping more than I am awake, everything aches and hurts. However I am really naffed off I hate feeling so useless and having to rely on people. So I’m hoping this christmas cold will soon go and the therapy will give me my life back.
Sam, Really sorry to hear that, I hope the treatment works as well as they say. Please let me know how it is. I have something of an interest in it…
Sorry you are feeling down as well. It sometimes hits you that way. You just have to remember you will feel less tired and be back to a much more normal state.
I have spoken to others who have had Rituximab and they said it left them as good as new. Fingers crossed!
Bob Livings said:
I had Rituximab via chemo R-CVP. But had very bad reactions to it. They managed to get about two and a half doses in before the reactions were that bad that they had to stop treatment.
However three months on i have had a scan and the cancer which I had in my sinuses has gone and my spleen has shrunk from 18cm to 11cm. My Platelets are up from around 80 to 135.
I am now on watch and wait and saw the consultant Mon. There is a new drug out that they can use instead of Rituximab now that is more human based. Apparently Rituximab is Rat based. (I think I got that right in the excitement)
So when and if it comes back I can have that instead.
Good Luck in the future and look forward to your next blog.
At least they got 2 and a half doses in and it seems it had some effect. I’d be really interested to hear about this new drug. When you find out the name please met me know and I will do some research on it.
Good news on the platelets and spleen shrinkage though, very positive!
Bob Livings said:
I think it was this http://www.medscape.com/viewarticle/755315 Obinutuzumab.
I was diagnosed with marginal zone lyphoma in Oct. 2013. Treatment was weekly Rituximab for 2 weeks which seemed to work great until allergic reaction 5 days after 2nd treatment –hives, aching joints, couldn’t sleep. So treatment stopped, blood work is normal today (March 12) and spleen and lymph nodes got 40% smaller. My question, has anyone else been in my position and what was the follow up treatment and how soon was it needed? I am 70 and in good health otherwise. Jean
Hi. My mother-in-law has the same lymphoma as you. Her spleen was grossly enlarged and as a result (and because she 80 and not young like you) we opted for rituximab. She had 4 treatments over 4 weeks. She could have had it alone but in order for the rituximab to be covered by the NHS she had to have chemotherapy as well. They gave her the lowest possible dose. She managed it well although she did get very tired. She did have a few bouts of of diarrhoea but I think that may have been related to something else.
Her spleen has shrunk (although still enlarged) and her platelets are good. The doctors say she is more likely to succumb to something else than this cancer.
Hope you can put off treatment for a little while. All the best, Jane