Forum Replies Created

Viewing 15 posts - 1 through 15 (of 178 total)
  • Author
    Posts
  • in reply to: Stage 4 metastatic melanoma tumor on the sacrum #66773
    lak1
    Participant

    I have involvement o fmy cervical spine. My right hand went numb and i had pain in my neck in August. I started Denosumab subcutaneous injections montlhly to prevent fractures and Keytruda every 3 weeks. After the second Keytruda I had normal sensation and no pain. When the Denosumab was with held pain came back. Went with restarting. When the Keytruda was witheld the same story.

    in reply to: Pembroizumab approved for use in UK #66762
    lak1
    Participant

    Sadly the situation is far from clear now.

    NICE have approved the drug but Cancer Drug Fund have not approved funding. The rules for funding in CDF have changed since July 2014 and they now take cost into account .

    So it can be prescribed but I have no idea who funds it.

    in reply to: Anyone had multiple doses of Ipi/Yervoy? #66039
    lak1
    Participant

    HI Nan,

    I attempted 3 rounds with OM. It was never a dramatic response for me just long periods of stability.

    The first round diarrohea hepatititis and hypophysitis 2010 recieved 4 doses.

    The second round 2013 colitis requiring high dose steroids iv for 3 weeks and inflixinib. I only got 3 doses

    The third round 2014 8 days after first dose colitis requiring Iv feeding 3 weeks I did get tumour shrinkage but i could have no more ipi. after 6 weeks the lesions grew again. I did not get recurrence of hepatitis . This last time I refused Inflixinib- !

    Now on Keytruda and lesions are shrinking and some staying the same.

    in reply to: fever on Keytruda #65996
    lak1
    Participant

    Marha thanks for the reply

    I have been taking Tylenol for the fevers since they started but I did not do it before the infusion.

    Do you just take the 2 doses- ?

    are you responding?

    I already take Benadryl once a day antihistamine for itch ( cetirizine ) but I take it twice daily to control the itch and rash.

    You just have the 2 doses?

    Lesley

    in reply to: Potentially Exciting Brain Mets Drug on Horizon #65947
    lak1
    Participant

    I find it exciting. But obviously far too far off for any of us.

    This is a very complex issue as the link between brain cells and tumours and melanoma lie in their common embyrlogical orgins. Embryology was always a difficult subject for me and my understanding of it is very basic to say the least. The link also involves genetics and epigenetic factors- also complex and my knowledge is basic. Epigenetics involves factors that dont specifically alter the genes but the shapes of the dna molecules that then alters the way that gene may be expressed.

    Neural crest tissue in the Embryo is the source of nerves and brain. It is also the source of melanocytes – cells containing the pigment melonin. Neural crest tissues are able to migrate throughout the embryo and invade into organs- which is switched off after the embryo is formed .However melanoma cells seem to be able to restart this.

    Compared to other carcimomas melanoma has different transcriptional factors sometimes they are antagonistic sometimes they are inducing transcription factors.

    I really cannot understand fully the genetics etc but it is the fact that melanoma cells are derived from the neural crest cells that give them their – plasticity- and ability to migrate and invade all organs. It also explains the dormancy and hetrogenicity- each clone of wave of metastases generating from a different stem line.

    Very complex but very interesting. I dont think I have explained it well as I only really understand the surface of these topics . However I hope it gives insight into why it might be very interesting.

    in reply to: Trip to the U.S. #65858
    lak1
    Participant

    Dear Rong,

    Your Doctor friend can see you and your mother, he knows you, we are not in that position. So it is difficult to say anything.

    However your mother does sound very ill, to fly long haul one has to have a fitness to fly. I think someone who has periods of unconciousness will not get this fitness to fly certificate.

    Even if you went to the US for treatment it would not be curative. She would again need a fitness to fly certificate after any possible treatment to return home. Or of course you might decide to stay in the US if you were allowed the visa to stay till no more treatment was necessary.

    I would talk again to your doctor friend who knows you and your family personally, it might be that your mother is very close to death indeed and then you would have to take into consideration all of wishes she might have had to be with her family at this time.

    You are in a very hard position , but I would be surprised if your mother could fly, at all now. Although maybe in a private Lear jet at low altitude. The fits will be made worse in a plane at high altituded due to the lack of oxygen.

    I am sorry my answer is not what you would want to hear.

    in reply to: shaking legs after ipi? #65775
    lak1
    Participant

    The weakness I had came after 30lb weight loss due to colitis and I was on high dose steroids so not the same as you. I would inform your medics as neuropathy is possible

    good luck

    in reply to: Results from final infusion of Ipilimumab #61846
    lak1
    Participant

    Diana ,

    Just for future reference- gamma knife on small lesions is a breeze – I had mine in Leeds . Within a month i was driving again and that was in March 2013.

    I point blank refused surgery ( very difficult site) and whole brain radiation.

    I have been keeping an open mind on treating my neck bones with radiation for 8 weeks. I m not at all keen for the reasons you say fatigue etc.

    The point I want to make is gamma knife should not be ruled out on the grounds of radiation side effects. Treat the lesions while small and sub 3cm but sub 1cm is better and the side effects are just of the scalp where they fit the metal frame on.

    Good luck keep responding- I went from 2010-2013 after my first ipi round.

    in reply to: My experience with Merck’s anti-PD1 (Keytruda) since May #65761
    lak1
    Participant

    Hi Jonathan,

    Good to hear from you – I held my breath with the news of your surgeries.

    I too just managed by the skin of my teeth to get on the UK expanded access for Keytruda. The doctors are fast filling their quotas and mine is over filled but sofar Merk have not turned him down.

    I was sick as a dog following one dose of Ipi in May- but did have a response. By the time I was well and off steroids i was progressing again August. Merk reorganised its approval service in UK and vacations led to me not starting anti pd1 till sept. A week later liver mri revealed 10 liver mets. I have OM and it loves the liver- I opted to add Sirtex in as well . So I had that the 9 oct the week before my third dose. Next week I get dose 4.

    No major side effects although I do get tired and joint pains especially mid cycle. But I have had 3 doses and not been hospitalised – that never happened with ipi.

    My subcutaneous lesions ache and are tender. So we will have to see. I have developed spinal mets any knowledge whether Keytruda is effective in bone mets?

    Lesley

    in reply to: Ipi and pd1 failed. What now??? #65582
    lak1
    Participant

    If it makes you feel any better I have ocular melanoma a feature of this different to skin melanoma is that it is able to to turn the killing T cells into regulator Tcells which then protect the cancer from the immune system. This also happens in head and neck cancer. Mucosal melanoma is not the same as skin melanoma but I do not know whether it has the same immune escape mechanism as mine. I take Tadalafil ( I am female) because it prevents this down regulation of Tcells. So we probably do not know the out come of the viagra Tadalafil and melanoma story. I guess in your case it is about quality of life – in mine i have taken a risk jumped on the back of a horse and now i need to ride it till we know.

    This is a clip about the research

    [http://www.scientificamerican.com/blog/post/could-cialis-help-treat-some-cancer-2009-05-04/?id=could-cialis-help-treat-some-cancer-2009-05-04]

    a second article about the theory

    [http://www.gbmc.org/documents%5CServices%5CDance%5CCalifanopresentation.pdf]

    in reply to: Waiting for answer Merck EAP #65361
    lak1
    Participant

    Ninni – how severe was your hepatitis- ALT more than 5 times normal? Was there any other reason why liver enzymes might be up- I have known people get roung this by noting that there was ablation of liver at same time or radiation of spine causing some liver damage etc. Or any other reason for liver damage which is now rectified?

    in reply to: Waiting for answer Merck EAP #65357
    lak1
    Participant

    My oncologist applied for me 28 th August he originally appleid to the IDIS compay but they are no longer handling applications ( he applied I think about 18th) I got approval this Mon 1st Sept.

    Hopefully i will have it this week.

    in reply to: Treatment ideas? #65206
    lak1
    Participant

    Has anyone tried injecting rose bengal into such misbehaving tumours? I know there was a presentation ?poster at ASCO and a trial in the US for this. It reportedly kills melanoma cells and can induce an immune response – surely what is needed post ipi or pd1

    in reply to: Driving after gamma Knife for brain metastases #65049
    lak1
    Participant

    Hi,

    I had a 3- 4mm dural lesion – suspected melanoma metastases treated in UK in March 2013. With Gamma knife in Leeds. Stage IV since 2009.

    I had the support of my doctor DR Hadfield. Who felt that i had no risk of epilepsy and was not sure that it was melanoma (might have been an early menigioma.) but was treated as if it was melaonama. I had to fill out the DVLA form and my doctor submitted evidence. I was not stopped from driving other than the first month post gamma knife.

    My tumour was a lot smaller – sub cm but even so yours are still small.

    I have no signs of an lesions in my brain now – I have contrast enhanced MRI with 2 mm slicing.

    I had ipilimumab in in 2010 for microscopic lesions on the histology of the resection margin of my liver, I developed the dural lesion in 2013 I had 3 further IPi doses. I had more growth of sub cutaneous lesions in March of this year but only tolerated one dose due to colitis. I have had sub cut lesions shrink since. I am now looking to start anti Pd1 after ny next scans in 2 weeks. The numbers are low but the best responses /stablitly have been seen in those treated with very small lesions.- sub cm and good performance. My performance is still down but rapidly improving since being able to eat again.

    Lesley

    in reply to: evidence for 2nd reinduction of ipilimumab #64320
    lak1
    Participant

    Thanks Jonathan,

    I am very well in myself just back from 2 weeks SCUBA in Maldives. I still run, However it is clear that i m slowly progressing. I have had liver ablation for sub 5mm lesions in liver on 2 occaisinos since December.

    I applied to the Cancer drug fund in the NHS to fund more ipi for me- they can only do this for exceptional pateints – they denied that uveal melanoma was a seperate disease to skin melanoma and thus said i did not have a rare disease.

    They said that as there was no evidence for retretment a 3 rd time there was no reason to do it. I just feel that i would like to do something proir to letting my disease run away and escape. Glad you are on anti pd 1 has your neuropathies improved for stopping the other treatment?

    I would like anti pd 1 too but it will not be in UK till autumn at the earliest and I dont trust my disease not to have blown by then.

Viewing 15 posts - 1 through 15 (of 178 total)