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February 24, 2015 at 9:25 pm #22386MikersParticipant
do you mind to exchange experience about regular body scans which many of us have to go through?
– first of all – how often?
Should it be every 2 months or 3 months or 18 weeks? Or every 2 months first year and then every 3 months (in case of stable disease)?
– which parts of the body? only those which are under control because of original tumors? or abdomen and chest are always mandatory? when to include head and when other parts like legs, hands…?
– method – MRI or CT? which method is better and for which location? what about ultrasound? others?
– with or without contrast? and what type of contrast matter (iodine or glucose)?
my CT experts have told that they don’t need contrast since they have known what they have been looking for. Oncologists say that contrast is always preferable…
– what are side effects of CT (I guess, the only MRI side effect – is high cost
). I’ve read that chest CT itself can itself cause lung cancer in the future (
– finally did anyone have success with blood values control? I mean LDH, C-reactive protein, S100? How often are they suitable for therapy evaluation?
Thank you for reply!February 24, 2015 at 9:48 pm #66622ThomvdvParticipant
this is all i can say of my sisters (21 months on BRAF/MEK)
° to map out situation (1st mel, 2nd mel, 3rd mel and mets): PET-scan + ct + mri
° ultrasound every 3 months
° first 12months: CT scan every 8 weeks + extra detailed brain mri when thought to be needed
° after 12 months: CT scan every 12 weeks (protocol trail + onc thinks 12 weeks is sufficient and ct too toxic in the long run) + extra detailed brain mri when thought to be needed
CT are with contrast but don’t know which.
all the best,
TomFebruary 24, 2015 at 10:57 pm #66623rochelleParticipant
Since I was diagnosed Jan. 2009…I have been on every kind of scan schedule ranging from every 4 weeks (as required by some trials) to typically every three months. For 3-4 years I wasn’t having standard CT scans, I was having pet scans with/without contrast. And because of the radiation used in pet scans I was actually “picked up” by the NYPD..once in Grand Central and once on 2nd Ave. The police in NYC carry personal geiger counters for detecting radiation and I was setting them off. Now I carry a letter from the imaging facility.
In addition to the CT/PET scans, I would also have an MRI of the location of my disease. Also I have had scans and MRI’s prior to surgery etc.
I don’t know if there is any such thing as a standard scan schedule…but I do know when my disease is stable..typically my doc would scan me every 3-4 months.
As far as frequency and the risks involved…well…I have had conversations with my doctor and the great thing about her is we weigh the risks together.
Hope this helps!
MarthaFebruary 26, 2015 at 12:19 am #66624Catherine PooleKeymaster
Thanks for your wonderful post! So good to hear from you. You are doing well? It sounds like it.February 26, 2015 at 3:53 pm #66625Linda56Participant
In addition to the posts on this topic, I would like to share my scan and treatment schedule:
Diagnostic : stage IV in June 2012 – no primary found
Metastasis in lung/kidney/abdomen and several tumors underneath the skin on the whole body.
Poor prognosis : six to nine months, but this prognosis changed rapidly when lab results showed that I was BRAF positive. There was light again at the end of the tunnel !
BRAF inhibitor Zelboraf since August 2012
PET and CT scan every two months since then.
All tumors shrinking and dissappearing quickly. The first months severe side effects : complete hair loss, sore hands and feet, skin problems, etc… I think I went through almost every side effect that was listed in the patient information. But the longer, the more the side effects easened. My hair is now back to normal again. However, the sun sensitivity never got better on Zelboraf.
NED in May 2013
In March 2014, I started the BRAF/MEK combo (Dabrafenib/Trametinib)
Immediate relief on my feet and hands and also the sun sensitivity was much better. I am now able to go into the sun (with sunscreen) without any problems. No major side effects so far.
In April 2014 the PET scan showed a possible metastasis in the sacrum bone area. After MRI, it was decided to do radiotherapy treatment, but just before the start of the treatment, the pain was gone and so it was decided to wait until the next scan which was one month later.
The spot had not changed in growth and so nothing was done.
In August 2014 I made a bad fall and broke my hip (result hip prothesis and subsequent revalidation).
In September 2014 I had my usual scan, but due to my accident, there were too much areas of inflammation and the doctors concluded that this was probably due to my accident because of my injuries during the fall.
The next scan was planned in November 2014 and I received a very good report : completely NED again.
Since then the scan is planned every three months. The last scan beginning of February showed also NED.
So in total I am now doing fine already for 31 months on BRAF (+ MEK since 12 months) and I am able to live a normal life.
I am very thankful and hope to go on like this for a very long time … also thanks to my doctors in which I have total confidence. Since the start of my treatment, they have always taken the right decision for me.
I would also like to say that this forum is very important because it provides a lot of information on new drugs and treatments and it gives a lot of hope to other people in this situation.
Kind regardsFebruary 26, 2015 at 9:34 pm #66626MikersParticipant
Thank you, Linda!
As far as I understand, NED status got on braf combo doesn’t mean you can stop having it? So you should continue anyway unless unacceptable toxicity or disease progress?February 27, 2015 at 7:42 am #66627Linda56Participant
I am still taking the BRAF/MEK without any interruption. However, since a few months I am now taking a 3/4 dose and it works as good as with the full dose.
I hope this helps you. I have read about your questions on the various treatments available and from my point of view, I think that it’s best to have the BRAF inhibitors in order to reduce the tumor burden because this medication works very quickly while other treatments may take some months before any results are booked.
LindaFebruary 27, 2015 at 10:05 am #66628JBunyanParticipant
To answer mikers original query, I can only state my experience. Grade 4 on forearm 2008. Only dermatologist’s examinations – no scans. 2012 unrelated kidney TCC leading to a nephrectomy – a “burnt out” melanoma lymph node found. Then referred to a top Oncologist – a series of CT, PET and MRI scans at first (for about 9 months) revealed nothing. (BTW I am BRAF negative so the combi was not an option). I had torso CT scans on a 4 month basis. Eventually a couple of small lymph node mets showed up (aorta, axilla). I was then proposed for a drug trial funded by a drug company and had a full body and head CT scan. The CT found one small brain met – the head MRI found two. My oncologist then sent me for Gamma Knife for the brain mets (worked OK) and in October 2013 I started the 4 doses of Ipi – ending in Jan 2014. Had a 3 and 6 month CT – the second was NED in the torso, and I am now on a 6 months CT torso schedule. I have had 3 monthly MRI brain scans which are stable.
My conclusion: For me, 4- 6 monthly torso CT. 3 monthly brain MRI for, say, 2 years.
I think that PET is a bit too OTT if you know you have melanoma. I also think that a brain MRI should be done early after grade 4 diagnosis (rather than waiting for symptoms) as up to 40% of melanoma folk get brain mets I believe. It seems MRI is good for soft tissues such as liver, brain etc, but CT is the work horse for whole body scans. PET shows “hot spots” but I am not sure if it is as accurate in sizing mets.
At the moment I am a responder and am totally NED – next scans in April. In UK where we have a NHS scheme free at point of use but the regulatory body is not as fast to approve new expensive treatments as insurance based systems such as the USA.February 27, 2015 at 10:20 am #66629JBunyanParticipant
PS I believe that the infused contrast for CT scans here is iodine based – for brain MRI they use gandolium . I try where possible, if needing both types of scan, to have them a couple of hours apart so the same canula can be used. I think the CT one gives you a “hot flush” as they press the button to infuse it – in both cases they scan with and without contrast during the same session.
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