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July 16, 2013 at 7:36 am #21453
On 28th June I had my results following the final infusion of ‘ippy’. Greeted by the words my findings were rather ‘unusual’ seemed completely correct for myself. Prior to this drug these were my tumours;
Pancreas – 2.7 and 1.6 cm
Lung – 2.4 and 1.6 cm
Lymph nodes and T1 transverse bone metastasis
Just prior to my first infusion a brain tumour of 4.5 cm came to light on the MRI scan. The decision was made to continue with the infusion on the basis ‘ippy’ can generate a response both in the disease as well as outside the brain. The brain tumour was surgically removed on 5th April and three weeks later I had my second infusion.
Pancreas – No sign of any tumours and the area now looks normal
Lung – 0.6 cm and 1.0 cm
No mention of lymph nodes and T1 transverse bone metastasis
Yes a brilliant result, however, this is where I am a little unusual;
Lung’ 2-3 mm lung nodules of uncertain significance
Brain – two new lesions – 1.4 cm and 7 mm
What to do next;
My specialist asked if I would consider waiting to see if there would be a further response. Both brain tumours will be inoperable in the position they had been found and radiation would be the next step. Her initial request was to stand firm for six weeks, I have increased this period to eight weeks. I am placing as much confidence in this new drug as possible and allowing it the best chance of showing its true potential. I have requested we stay away from the PET scan with radioactive material and agreed we rescan again using the same imaging modalities a CT scan and MRI both with dye. It is a long wait so I have already skipped the country to Cyprus and sat by the sea watching the sun set and with the help of family and friends I will be kept busy.July 16, 2013 at 1:51 pm #61826AnonymousGuest
An excellent result overall IMO, except for the new brain mets. But they can be treated with radiation.
To be honest with you, I would go right after the brain mets with radiation and not wait. I guess I don’t understand the logic in waiting for the IPI to do its work in the brain when you can help it along considerably with radiation unless there is some concern with their location and size. Also, brain mets can bleed. Also, also, you need to have them treated and at least stable to get into a PD1 trial. So if it was me, I’d get them zapped, like next week.
But a good result! The stuff is shrinking.
JeffJuly 16, 2013 at 2:21 pm #61827Catherine PooleKeymaster
I’m with Jeff on this one. I wouldn’t delay the radiation on the brain mets. Are they able to do gamma knife (cyberknife)? If so, go for it soon and rid of them. Please take a look at our webinar by the neurosurgeon from Yale for more info: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.UeVmBfXD8icJuly 16, 2013 at 3:32 pm #61828Etapa4Participant I want also endorse what Jeff said and what Catherine affirmed. One of the great benefits of Ipi is that you can have radiotherapy @ the same time. Melanoma lesions are more vascular — therefore, one doesn’t want to risk any more of a chance hemorrhaging. While melanoma has been known to be radio resistant, not all types are — and it may wrap up the lesions in scar tissue at least & make them less vulnerable to hemorrhage etc.
I am on ipi & getting brain mets txed with radiation. Ask your docs about pseudo progression. One downside ti ipi is not being able to use steroids along w/ rad. Something to also speak to your med staff about.
A heartiest best of luck!!
EtiJuly 18, 2013 at 4:55 am #61829lak1Participant
gamma knife for the brain lesions is what I would do . You can also then hope that the immune response will be even more pronnouced. I first had ipi in 2010 and have been watching patients responses since 2007. Your mixed early resposne seems somewhat typical to me.
LesleyJuly 25, 2013 at 10:33 am #61830
Thank you for your very valid input and when I first read your unanimous answers, I did query why on earth I was sitting back for so long.
My three year old granddaughter then turned up and we all took off to a forest nearby with our dog Dexter. I didn’t mention what I had read to my husband; as coming away from the dappled sunshine within the forest, laughing at Dexter rolling in cow’s poo and seeing the foxes, rabbits, no deer today far too hot, I knew really why I was holding firm.
Because my family have been on this horrendous journey with me and are worn out following the more recent events. My mental problems on the steroid drug, followed by the brain surgery, followed by ippy. My husband and both sons have been with me every step of the way. They have not faltered once, they deserve a rest.
So I will touch the biggest piece of wood I can find, enjoy being out to pasture for the first English summer in too many years and hope my body allows me to hold firm until my scans on 27th August.
Thank you again for your replies and I will make sure I have this information to hand.
DianaJuly 25, 2013 at 2:24 pm #61831Catherine PooleKeymaster
Sounds like a lovely walk in the forest. I heard about the heat over there, we have had it too. You must do what is feel is best for you and your body. But don’t disregard any symptoms in the meantime. Continue to enjoy the moments!August 30, 2013 at 7:40 pm #61832 Ok, the results are in!! and a brilliant one too…further reduction in the brain and lung Yes I sat back for eight weeks after my final infusion and only in the last week I became rather techy to say the least. Holding for so long and putting all your faith in a new drug was the hardest thing I did. Yet at the same time I contradict myself as radiation for me would always be the very last resort. I always felt to make myself ill and sick through radiation was almost writing my own death sentence.
There has been a reduction in the brain nodules and lung with no new growth. ‘We’ the royal one of course
are now waiting a further three months to scan again using the same modules, MRI and CT both with dye contrast.
I feel very strongly if you are lucky enough to have a good result from Ipilimumab then give it every chance even beyond the brain barrier. When my itching stopped four weeks after the last infusion I worried it was no longer working. What the hell was I doing… Yet I believe you also need to give your body a chance to recoup from the constant onslaught. I am lucky my husband has undertaken the task of feeding me. To me food is a low priority, to him it has always been a high priority. Not rubbish food, but meat from our local butchers, fruit, vegetables – quality foods’, combined with lots of exercise, laughter and love.
Yes it was a gamble yet it paid off and for that I am forever grateful.
I do believe my immune system broke down due to very difficult times in my life back in 2009. I was in a terrible place and took on all those that had sought to destroy my world. At one stage my husband used to walk in and look straight in the garbage bin…why? to see if I had eaten. He was usually right, I hadn’t. This went on for three years, him trying to support me, me seeking justice.
With the benefit of hindsight I am now so more aware on what I put my body through during those years and am now making plans never to repeat it again. I have been given a second chance and I am grasping it with both hands.
I realise there are many factors that influence our choices of treatment and I am lucky that I do not have a young family, just two well adjusted sons in their twenties. I was able to think about myself and chose quality of life rather than quantity.
Ok, so off my soap box and I will of course update you again in three months time. I am so grateful for all your guidance and if there are any changes in my health, of course, I have my specialists phone number on speed dial
we have also discussed the option of further ipilimumab if necessary. How lovely to have an option!
Best wishes to you all
DianaAugust 31, 2013 at 4:58 am #61833
Fantastic report Diana. Praying for continued results for you.August 31, 2013 at 7:08 am #61834 Thank you, it is a wonderful result.
I just had a quick look through other posts and noticed this response to someone who is having good results taking Zelboraf;
Great to hear this news. As a point of information, I have had off and on elevated creatin and bilirubin levels. I made a conscious decision to make sure I stay well hydrated. At my check-up last week, both were the best they’ve been in a long time. Anyway, 21 months and NED, wow, keep it up.
I think we all need to think more about what we are eating and drinking. My younger son found an article on drinking water on the American John Wayne Hospital site and now I tend only to drink filtered water which I have always used for my kettle, just to reduce the scale. It is surprising how these little changes can have big influences on our bodies. I too need to drink more water and have to make a point of remembering to do so.
DianaNovember 24, 2013 at 2:40 pm #61835
Scan results in for November;
A further three months has passed and once again I had the same scans an MRI and CT both with contrast dye. I am pleased to advise the drug ipilimumab is still working.
There has been a further reduction in the lung and equally with the two new lesions found after my brain tumour was removed on 5th April.
Whilst it is still early days; my first infusion on 8th March, then a delay due to finding the brain tumour, the final infusion was on 7th June, this on-going response is brilliant.
The first scan results on 28th June were exceptional and the drug continues to chip away at the tumours. Hopefully one day my own immune system will work correctly on its own.
For now though I am very lucky this new drug worked for me and I hope this or another new drug will have the same benefit for others. I have been told that ‘if’ found necessary I can always have another infusion. This in itself is music to my ears. At the beginning of the year and once the disease reached my brain I was certain I would die, all I was being offered was dacarzabine. Just remember how quickly life can change for the better and hold onto that hope.
Thank you as always to this forum.
DianaNovember 25, 2013 at 4:39 pm #61836
Wonderful news Diana. I’m sitting here about to receive my 2nd IPI infusion so your post certainly lifted my spirits!
BrianMarch 6, 2014 at 10:44 am #61837
Time again at the end of February for my three monthly scans – MRI brain and CT body both with contrast dye.
The results are;
Further reduction in the remaining brain mets found after the surgical removal of a 4.5 cm diameter metastasis left temporal lobe.
Tumours in the pancreas and lung can be seen but there is an ongoing response.
No evidence of previous metastasis to aortocaval lymph nodes and T1 transverse bone metastasis found in 2013.
Other tumours in the leg (most of the anterior shin removed with large skin graft) and large tumour in the ‘buttock’ have been surgically removed in the past years.
I was given my first infusion of Ipilimumab on 8th March 2013 whilst also being on a the steroid Dexamethasone. I then had surgery for the removal of the brain tumour on 5th April 2013 and on 27th April recommenced my second infusion of Ipilimumab. On completion of my four infusions despite being made aware of two new brain mets – I had no further treatment. My decision, based on my own personal feelings. In November it was confirmed the brain mets were reducing.
I have been extremely fortunate. Ipilimumab has continue to work albeit very slowly. It has required a lot of patience and continued faith in my specialist -Faith I now have but not until ditching three other specialists.
I am BRAF wild type – Blood type HLAA2 – so many drugs/trials were closed to me.
I hope many others will find a Specialist they feel safe with and a drug that gives them hope.
Best wishes to all – Diana xJune 9, 2014 at 2:03 pm #61838
Scan results for June 2014 –
Results are excellent again! There are only a few remaining nodules that can be seen on the scans.
We have agreed to move my next scans to ‘four’ months – how exciting! long may it continue.
It is now 16 months since my first infusion of ipppy in March 2013. The first infusion was carried out even though I was waiting for a brain tumour to be removed and resumed three weeks after the surgery. The nodules that then appeared in the brain after surgery are no longer visible and this is all down to immunotherapy. Wow how brilliant is that.
One day, hopefully, I will become NED but I am more than happy with the ongoing response.
Best wishes to all,
DianaJune 10, 2014 at 12:51 am #61839
Love that report Diana!!!
Thanks for posting.
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