You know, you think you know how you will handle this stage when you get to it, but let me tell you, you only think you do. It is so much more difficult than one could imagine. After all, it's your life you are making a decision about. About which options will give you the best chance and least side effects for a prolonged remission.
To recap the current options I am considering they are, and are in no order of preference;
A) Watch and Wait.
(The following information is from www.lymphomas.org.uk)
Many people with lymphoma will not have treatment, sometimes for prolonged periods
of time. This can be hard to understand – it is not what most people expect of a cancer
diagnosis, especially when we hear so much about the importance of early cancer treatment.
But for many people, no treatment is the best option. Scientific evidence tells us that
in some cases ‘watch and wait’ is the best choice, and that immediate treatment is not
necessarily a good thing.
This article will discuss:
• what is meant by ‘watch and wait’
• when ‘watch and wait’ will be recommended
• the advantages and disadvantages of ‘watch and wait’
• what ‘watch and wait’ involves
• the future for ‘watch and wait’
• what you can do to help yourself.
What is meant by ‘watch and wait’?
‘Watch and wait’ means a period of time when you have no lymphoma treatment.
You have regular appointments with your specialist who will monitor how you are feeling
and check for changes in your lymphoma. Treatment will be delayed until you need it.
You may hear it called ‘active monitoring’.
Treatment will be delayed until:
• you start to develop troubling symptoms
• your enlarged nodes start to change significantly
• test results suggest that major organs or bone marrow are affected.
Results from clinical trials tell us that the average time from diagnosis to
commencement of treatment is approximately 2-3 years. However some people can
carry on for many years without needing any treatment.
People often misunderstand ‘watch and wait’:
• It does not mean that your disease is too advanced to treat.
• It does not mean that you are too old to be treated.
• It means that it is in your best interests to keep an eye on the situation and to save
treatment for when it is necessary.
When will ‘watch and wait’ be recommended?
‘Watch and wait’ is most often used for low grade non-Hodgkin lymphoma, particularly
follicular lymphoma. Follicular lymphoma makes up about 25% of all non-Hodgkin
lymphomas, so about a quarter of people with non-Hodgkin lymphoma are likely to
experience ‘watch and wait’ at some stage.
Low grade non-Hodgkin lymphoma can grow very slowly, perhaps over many years. It can
cause few problems, even at an advanced stage.
‘Watch and wait’ will be recommended for people who:
• feel well
• have no distressing symptoms
• have enlarged nodes that are not changing quickly or causing problems
• have no problems with major organ function.
‘Watch and wait’ can also be used for other low grade lymphomas, including
Waldenström’s macroglobulinaemia and marginal zone lymphoma.
It is also a common way to manage chronic lymphocytic leukaemia.
Mantle cell lymphoma (MCL) accounts for less than 5% of all non-Hodgkin lymphomas.
Mantle cell lymphoma usually behaves like an aggressive lymphoma but in some cases it
will be more indolent. Watch and wait might be suitable in these cases, particularly if the
person concerned is not fit enough for immediate treatment.
A rare type of Hodgkin lymphoma, known as lymphocyte predominant Hodgkin
lymphoma, can be slow growing. Some doctors suggest that this disease could also be
managed with ‘watch and wait’. (This is my current cancer)
Advantages and disadvantages of ‘watch
and wait’
Evidence from clinical trials tells us that the long term survival of people with
slow growing disease on ‘watch and wait’ is just as good as those who commence
treatment earlier.
The main advantage of ‘watch and wait’ is that you are not exposed to treatment before
you need to be. There are several advantages to this.
Your quality of life may be better without having to go to the hospital for treatment, and
without treatment side effects. Most people who are managed on ‘watch and wait’ enjoy
a long period of good quality of life before treatment begins and respond well to
treatment when this becomes necessary.
Although lymphoma treatments can be effective, they can have unpleasant and risky
side effects. One of the particular problems with chemotherapy, for example, is that it
suppresses the bone marrow.
Suppression of the bone marrow reduces healthy white blood cells, meaning that you are
at risk of infection.
‘Watch and wait’ means that you are not exposed to the risks of chemotherapy before
you need to be.
Some people will have several courses of chemotherapy treatment over time. Lymphoma
cells can become resistant to chemotherapy with repeated courses of treatment.
By delaying chemotherapy until necessary, a watch and wait approach will mean that the
potential for resistance is kept to a minimum.
The main disadvantage of ‘watch and wait’ is that some people find it hard to cope
with. It can be difficult to have to live with a disease and wait for it to get worse before
something is done about it. Some people find it hard to get on with life and feel worried
and anxious.
What does ‘watch and wait’ involve?
your particular situation and decide on a plan together.
‘Watch and wait’ will usually mean:
• regular outpatient appointments – typically every 3 – 6 months
• regular blood tests and possibly repeat scans
• close observation of your enlarged nodes and general health.
You will have an important role to play. You will know what is normal for you and you
will be the best judge of when your illness is changing. You will be expected to keep your
medical team informed of any changes. Get in touch if you are worried about anything.
You can always change your appointment if you need to.
The future for ‘watch and wait’
Clinical trials continue to examine the use of watch and wait. A National Cancer
Research Network (NCRN) study is currently comparing ‘watch and wait’ with rituximab
for people who are well with no symptoms. The study has completed recruiting patients
and the information is being collected and analyzed. It will be a few years before the full
results of this study are known.
In the meantime, there is plenty of evidence to support the continued use of ‘watch and wait’.
What can I do to help myself?
There is no evidence to suggest that doing any one thing in particular will keep your
lymphoma at bay. But evidence does suggest that taking good care of yourself and living
well is important for good health in general. The following ideas might help.
• Eat a healthy diet and try to maintain a healthy weight.
• Try and keep to recommended alcohol intake per week and if you smoke give up.
• Take regular exercise. This will also help to improve fatigue, which is a common
experience for people with low grade lymphoma.
• Try to reduce or limit those parts of your life that are stressful or difficult. Take stock
of your responsibilities – identify things that you need help with or worries that need
some attention.
• Consider reducing working hours if you find your current hours are too demanding.
Ensure that you have time for relaxation and doing things you enjoy.
• Continue to make time to socialize and spend time with the people that
matter most to you.
• Be honest about your feelings. Talk to people about how you feel and seek help if you
are finding feelings hard to cope with. Try to avoid ignoring feelings that are persistent
and troublesome. If you think you might be depressed or if someone close to you
thinks you are depressed, talk to a doctor or nurse and seek help.
The Lymphoma Association can provide a booklet called ‘Living with
lymphoma’, with more information about these subjects.
Please telephone our helpline.
Conclusion:
Some people will find it hard waiting until their illness flares up without having treatment.
Try to remind yourself that having treatment would mean having to cope with side effects
without much benefit in the long term.
People who have been on ‘watch and wait’ say that the best thing to do is to try and
make the most of each day. Live well while you feel well. Think of ‘watch and wait’ as
an opportunity to maximize your quality of life – to actively take good care of yourself
rather than passively waiting for treatment to begin.
Acknowledgements:
The Lymphoma Association would like to thank Natalie Singer for her contribution to
this article. Natalie is a Macmillan Haemato-Oncology Clinical Nurse Specialist at the
West of Scotland Cancer Centre in Glasgow.
References:
(1) Evans L Hancock B. Non Hodgkin Lymphomas. The Lancet. 2003; 362 (9378): 139-146.
(2) Magrath IT. The Non-Hodgkin’s Lymphoma: Second Edition. 1997. London Arnold.
(3) McLaughlin P. Progress and promise in the treatment of indolent lymphomas. The Oncologist. 2002; (7)
217-225.
(4) Ardeshna K, et al. An intergroup randomized trial of rituximab versus a watch and wait strategy in
patients with advanced stage, asymptomatic, non-bulky follicular lymphoma. NCRN Watch and Wait
study. 2007.
(5) Rule S. The clinical management of mantle cell lymphoma. British Journal of Cancer
Management. 2005; 2(2) 5- 9.
(6) Franklin J, et al. Lymphocyte predominant Hodgkin’s disease: Pathology and clinical implication.
Annals of Oncology. 1998; 9(5) 39-44.
(7) Oscier D, et al. Guidelines on the diagnosis and management of chronic Lymphocytic leukaemia.
British Journal of Haematology. 2004; 125(3) 294-317.
(8) Ardeshna K, et al. Long term effect of a watch and wait policy versus immediate systemic treatment for
asymptomatic advanced- stage non-Hodgkin lymphoma. A randomized controlled trial. The Lancet. 2003;
362 56-522.
B) Start Chemotherapy now.
Then there is the option of proceeding with chemotherapy right away, most likely GDP Regimen which would only be used to keep the disease at bay. Not recommended at this time, but should I choose this option my oncologist would start treatment immediately. However as you can see by clicking on the GDP Regimen link above, it is a very toxic treatment with many side effects. I've been through it once and know first hand, and not sure it is something I want to go through if it is not necessary at the moment.
C) Clinical Trial option 1
From here we go on to the option of a clinical trial in Detroit Mi. at the Karmonos Cancer Institute.
Brentuximab Vedotin (SGN-35) for Relapsed CD30-Positive Lymphomas
N Engl J Med 2010; 363:1812-1821November 4, 2010
Background
Hodgkin's lymphoma and anaplastic large-cell lymphoma are the two most common tumors expressing CD30. Previous attempts to target the CD30 antigen with monoclonal-based therapies have shown minimal activity. To enhance the antitumor activity of CD30-directed therapy, the antitubulin agent monomethyl auristatin E (MMAE) was attached to a CD30-specific monoclonal antibody by an enzyme-cleavable linker, producing the antibody–drug conjugate brentuximab vedotin (SGN-35).Methods
In this phase 1, open-label, multicenter dose-escalation study, we administered brentuximab vedotin (at a dose of 0.1 to 3.6 mg per kilogram of body weight) every 3 weeks to 45 patients with relapsed or refractory CD30-positive hematologic cancers, primarily Hodgkin's lymphoma and anaplastic large-cell lymphoma. Patients had received a median of three previous chemotherapy regimens (range, one to seven), and 73% had undergone autologous stem-cell transplantation.Results
The maximum tolerated dose was 1.8 mg per kilogram, administered every 3 weeks. Objective responses, including 11 complete remissions, were observed in 17 patients. Of 12 patients who received the 1.8-mg-per-kilogram dose, 6 (50%) had an objective response. The median duration of response was at least 9.7 months. Tumor regression was observed in 36 of 42 patients who could be evaluated (86%). The most common adverse events were fatigue, pyrexia, diarrhea, nausea, neutropenia, and peripheral neuropathy.Conclusions
Brentuximab vedotin induced durable objective responses and resulted in tumor regression for most patients with relapsed or refractory CD30-positive lymphomas in this phase 1 study. Treatment was associated primarily with grade 1 or 2 (mild-to-moderate) toxic effects. (Funded by Seattle Genetics; ClinicalTrials.gov number, NCT00430846.)Supported by Seattle Genetics.
Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.
We thank Peter Senter, who led the team effort for developing the brentuximab vedotin drug-conjugate technology, Hong Ren and Yin Yang for statistical guidance, and Roberta Connelly for assistance in the preparation of the manuscript under the sponsorship of Seattle Genetics.
Source Information
From the Department of Lymphoma and Myeloma, University of Texas M.D. Anderson Cancer Center, Houston (A.Y.); Washington University, St. Louis (N.L.B.); Weill Medical College of Cornell University, New York (J.P.L.); Seattle Genetics, Bothell, WA (D.A.K., C.M.L., E.L.S.); and the University of Alabama at Birmingham, Birmingham (A.F.-T.).
Address reprint requests to Dr. Younes at the University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030, or at ayounes@mdanderson.org.
D) Clinical Trial option 2.
Then there is one final treatment that would only be available to me in the U.S. as well, and is one that just completed clinical trial and that is, Bendamustine + Rituxan
Bendamustine Plus Rituximab Is Effective and Has a Favorable Toxicity Profile in the Treatment of Mantle Cell and Low-Grade Non-Hodgkin's Lymphoma
Mathias J. Rummel, Salah E. Al-Batran, Soo-Z. Kim, Manfred Welslau, Ralf Hecker, Dorothea Kofahl-Krause, Klaus-M. Josten, Heinz Dürk, Andreas Rost, Michael Neise, Ulrich von Grünhagen, Kai U. Chow, Martin-L. Hansmann, Dieter Hoelzer, Paris S. Mitrou
Address reprint requests to Mathias J. Rummel, MD, PhD, Department of Internal Medicine, Hematology/Oncology, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt/Main, Germany; e-mail: rummel@em.uni-frankfurt.de
PURPOSE: The aim of this multicenter-study was to evaluate the progression-free survival, response rate and toxicity of the combination of bendamustine and rituximab (BR) in patients with mantle cell or low-grade lymphomas in first to third relapse or refractory to previous treatment.
PATIENTS AND METHODS: A total of 245 courses (median, four courses per patient) were administered to 63 patients. Bendamustine was given at a dose of 90 mg/m2 as a 30-minute infusion on days 1 and 2, combined with 375 mg/m2 rituximab on day 1, for a maximum of four cycles every 4 weeks. Histologies were 24 follicular, 16 mantle cell, 17 lymphoplasmacytoid, and six marginal zone lymphoma.
RESULTS: Fifty-seven of 63 patients responded to BR, corresponding to an overall response rate of 90% (95% CI, 80% to 96%) with a complete remission rate (CR) of 60% (95% CI, 47% to 72%). The median time of progression-free survival was 24 months (range, 5 to 44+ months), and the median duration of overall survival has not yet been reached. In mantle cell lymphomas, BR showed a considerable activity, achieving a response rate of 75% (95% CI, 48% to 93%) with a CR rate of 50%. Myelosuppression was the major toxicity, with 16% grade 3 and 4 leukocytopenia. Thrombocytopenia was rare, with only 3% grade 3 and 4.
CONCLUSION: These results demonstrate that the BR combination is a highly active regimen in the treatment of low-grade lymphomas and mantle cell lymphomas
So, as you can see I have my work cut out for me with these options to ponder. One thing is certain. With all that has gone on recently, I will be taking a little time "away from it all" with Brenda. Then we will make a decision on which route would be best to take.
I would like to thank all of those who have been there for me/us with suggestions and help with getting us through this period. Just know, that I take all the assistance I have gotten with regard to treatment options very seriously and consider them all with the help of my medical team at the cancer center. Stay tuned more to come soon. Love & hugs to everyone no matter where you are in your journey.
Tim, xxx
So, as you can see I have my work cut out for me with these options to ponder. One thing is certain. With all that has gone on recently, I will be taking a little time "away from it all" with Brenda. Then we will make a decision on which route would be best to take.
I would like to thank all of those who have been there for me/us with suggestions and help with getting us through this period. Just know, that I take all the assistance I have gotten with regard to treatment options very seriously and consider them all with the help of my medical team at the cancer center. Stay tuned more to come soon. Love & hugs to everyone no matter where you are in your journey.
Tim, xxx
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