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I am currently undergoing treatment for early stage cHL without B symptoms. The plan has been 2 cycles of ABVD, interim PET scan, and depending on the results, either consolidating 20 Gy radiotherapy, or further chemotherapy. I was told that statistically, 20% of patients require further chemotherapy.
I am now heading for the last infusion of the first line treatment. I asked my medical team about the schedule for next appointments, i.e. PET scan and treatment review, and was surprised to hear that there is usually a three week break after the end of last CHT cycle and start of radiotherapy. I was disappointed that I was not told about earlier, and I have specifically asked about timelines in order to try to plan my life around it. I was also told that this might be further postponed because they don't do a lot of radiotherapy during Christmas.
I was wondering if others had similar experiences? Is this a normal protocol? What can be the reason for such a three week planned break between the end of last CHT cycle and RT? Is this usual to postpone treatment further, for another two weeks because of holidays?
I would be really grateful if you could share your experiences.
With best wishes
Hi D f35chl2a and welcome to this corner of the Online Community, although I am sorry to see you finding us.
I had a different type of Lymphoma (CTCL) and a totally different treatment journey but can identify with the questions you are asking.
A 3 week delay following the end of your first line treatment and then a PET/CT can be normal. I had one 3 days after my long chemo treatment finished and in the words of my consultant "well that was a waste of time as your body has not recovered from your treatment so what we are seeing does not represent a clear representation as to the progress that has been made and also the chemo is still working for a while after it has been done"
A Christmas break in treatment can indeed happen, but this can often happen due to low counts, infections and 99% of the time it will make no difference to the overall outcomes.
When I started my Chemo I was given a quick blast on the 17th Dec (2013) then sent away and "Enjoy your family Christmas" and told to come back on the on the 27th Dec (2013) to start my first 5 day chemo cycle so I was in over New Year - a big deal for a Scot lol
You should have the number of your specialist nurse - give them a call and ask them the question.
I am sure that some of the HL folks will be along to say hi.
In the mean time you could try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'.
Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Always around to help out.
Mike - Thehighlander
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I have just finished my radio last week.
A three week gap between chemo and radio is actually pretty quick.
they will need to book you in for a consultation with an oncologist, a planning CT appointment and then they need a bit of time to plan your treatment. So all of this does take a bit of time.
i finished chemo on 12 Sept and started radio on 7 Oct.
Frustrating about potentially delaying over Xmas though.
Thank you for your kind reply, Jomil85! I already have a consulation booked for next week so will know the further plan & timelines soon. Really happy for you for finishing your treatment and I wish you all the best for your future!
Thank you for your message, Mike Thehighlander, and I hope you are doing well.
I already have an appointment booked for next week so will know the further treatment plan soon.
Do you have any source/data to back your statement that 99% of the time the delay of the treatment does not influence the outcome? My understanding is that most of the clinical studies do not have sufficient number of patients to achieve the statistical power needed to test this. However, for example for ABVD chemotherapy it is recommended that the infusions are not delayed and doses are not decreased because of low blood counts, as keeping the schedule is important for the outcomes. I have not came across similar guidelines regarding the consolidation radiotherapy, though.
With best wishes,
Hi again, I never was one for data so no to having anything to give you but I have meet lots of folks and indeed myself have had treatment delays for lots of reasons out with the control of the team especially low counts and infections. In all the years I have not actually meet anyone who would have said that a delay made a difference to the eventual outcome.
Remember I had NHL so a different journey but I think I was put off asking about percentages and data when my team said that “this treatment plan had to work as the next plan was a wooden box” - that focuses the attention a touch.
I had total trust in my various team and it was encouraging that they had put my complicated case out across the UK and a rode to find the very best treatment plan available.
Hi, just another pennorth to add to the mix; the vast majority of tumour mass gets zapped by the first cycle of ABVD, the course of ABVD prescribed is to catch residual hard-to-find and rogue cells that may be out there thinking about starting all this up again. Radiotherapy is to help shrink affected tissues and again, zap any traces of cells left. A slight delay means that it’s actually even more clever at finding those remaining cells before they get a hold. Obviously only a slight delay of course.....plus it helps you recover a bit more from chemo....
Many thanks for your input. That's exactly why I would prefer my treatment to follow the established protocols and avoid any delays which are organisational rather than intended for medical reason.
This is a quick update with an info I received from my consultant which I though others in a similar situation might find helpful in the future.
The established protocol at my hospital is starting RT within 4-6 weeks after the last infusion of ABVD. This is to allow the body to recover from chemotherapy and reduce side effects from combination of chemo- and radiotherapy.
On a more private note, I obtained complete metabolic response after 2 cycles of ABVD which is a huge relief! I am now heading for 20 Gy radiotherapy which will be delivered over two weeks Monday to Friday, starting after the next week or so.
Thank you again everybody for the kind words before and I hope you are doing well!
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