angelmar

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  • in reply to: Mistltoe Therapy #85564
    angelmar
    Member

    Beneficial effects of Mistletoe Therapy (MT) at Camphill Wellbeing Trust Aberdeen, Scotland

    I know that MT has been mentioned on various posts on the site. I wanted to share my experiences as they have made such a basic difference to my life.

    From the first infusion I had beneficial effects.

    Quality of life effects have been instantaneous, dramatic and consistent. I am doing things I have not been able to do for 4 years, since my extended liver resection.

    1. Energy levels have increased to the extent I can wash my face, brush my teeth, brush my hair daily. In addition have a daily shower.

    2. My sleep is restorative for the first time in 4 years. I feel more alert.

    3. Instead of spending most mornings and all evening in my dressing gown, do not change into night attire until I go to bed at 10ish rather than 7pm

    4. For the first time I feel I am ‘charging on more than 1 cylinder’ rather than energy leaching out of me. I can do a little of what I want to do with the time I have left.

    5. Improved family communication. Skype sessions have been invaluable but they have only previously lasted 5 mins, if that & very infrequently. Now, I can interact and converse more coherently.

    Recent research has shown that MT has helped cancer patients tolerate a chemotherapy regime for a longer period of time. In addition a trial in Serbia with advanced pancreatic cancer patients showed an increased overall survival. This, and my own recent personal experience is helping me feel more positive about proceeding with the Gemcitabine/Cisplatin palliative regime being offered.

    in reply to: Mistltoe Therapy #85563
    angelmar
    Member

    Thank you…….Went to Glasgow and was advised to head to Aberdeen for stronger treatment. Wonder if it works in the same way the Merk seems to work? Helping our immune system….
    Should hear from the Aberdeen Centre on Monday.
    We’re still reeling from the shock especially as the 2 recent blood tests had been ok. Am wondering what size that golf ball is now.
    Love Angela

    in reply to: GREAT NEWS – MERCK DRUG (Keytruda) is WORKING!! #84662
    angelmar
    Member

    This has been been very helpful and gives me a little piece of hope. I shall be in touch with UK contact on Monday. Wonder if it works in the same way that Mistletoe Therapy Works?
    Meanwhile, waiting for the chemo dates to start the Gemcitabine/Cisplatin therapy and wondering how fast the golf bal is growing. trying to Bless it and Release it.
    x

    in reply to: younger sister diagnosed with advanced cc #85010
    angelmar
    Member

    Jayne….know you had appt with Prof Valle in October. Are you able to update on result?
    x

    in reply to: younger sister diagnosed with advanced cc #85009
    angelmar
    Member

    Nano knife…..is that the same as Cyberknife?
    Had hoped my gp will support my referral to Dr Valle. It takes a lot to request a 2nd opinion from gp who has to contact consultant but I’ve done it. I have utmost respect for Edinburgh team dealing wth me but if there’s a chance of a different diagnosis and treatment I have to try haven’t I?
    Asked gp to support me in my request for mistletoe therapy. The registrar I saw was supportive but seems the practice gp was unsure about recommending it so it’s being deferred till next week for further discussion of the whole practice. This particular gp was the one I saw 4 years ago and although referred for X ray not given blood tests till locum took bloods on my 8th visit in8 weeks (Received sick notes though…first time in 25 years of work) LF Tests in hundreds at that point.
    Got that news re blocking requests at 5pm today so not much I can do till Monday. He also blocked referral to Dr Valle. Hoping from concrete answers from them on Monday.
    Looked at mistletoe comments on site and although not sure I can cope with injecting myself I want to give it a try.
    Love to all
    Angelax

    in reply to: Appreciate your input – webinar #85430
    angelmar
    Member

    I trust in Prof Garden who was as aggressive as he could be on doing my extended liver resection 4 years ago.

    I trust in the Edinburgh team at the Royal Infirmary that if they could operate they would operate, now that there is a highly suspicious mass around area of portal vein….where it was excised.

    However, Prof Garden was not in the MDT who discussed my recent scan results.

    I am wondering too if someone else e.g. Dr Valle/Mayo Clinic would take a chance and operate on me so will contact him…nothing to lose.

    The more I’ve read links in our website the more I see how each subtype requires different surgical and possible chemical treatment. Clinical Management Guidelines for cc are being reviewed by Scottish HPBNetwork this year. Though as someone says above…some surgeions just read black and white.

    Looking forward to the webinair today.xx

    in reply to: younger sister diagnosed with advanced cc #85007
    angelmar
    Member

    Dear Jayne,
    My heart goes out to you for you and your sister. Please check out if a Maggie’s Centre is near you. They will be of help to you all in so many ways. I was operated on by Prof James Garden , at the Royal Infirmary Edinburgh 4 years ago. Have total faith in him, what he did for me and the Edinburgh team.
    Last week I was told the cancer had returned and was inoperable due to the location, near the Portal Vein area. Am checking out Cyberknife in London and will check out Prof Valle too. Agree with Gavin, this site and ammf of great help.Praying for you.xxAngela

    angelmar
    Member

    Asked about Xeloda again today. Told that although the cancer proved sensitive before it might be resistant to anothe treatment but the Gem/Cis has evidence to extend lie by 2-3 months although toughter regime. So, that’s the one being offered. Duke, will keep that in mind and continue to explore other options too. Over here if funding not given then it’s a fight to get the drugs and in the land of cc we don’t have time. What we can do though is hopefully help future patients diagnosed with this.
    Will be starting in 2 -3 weeks if bloods ok.
    Love to all

    in reply to: Appreciate your input – webinar #85428
    angelmar
    Member

    Must mention Maggie’s centres once again re understanding what cancer patients/familes/carers go through and their support. Andy Anderson, Head of Edinburgh Maggie’s is going to Japan as they are itnerested over there in opening centres and they have an online centre too.

    Porter – 4 years after extended liver resection and Xeloda I look fantastic and feel terrible. Need naps throughout the day and it’s difficult because people expect me to be back to normal. Now vindicated (how terrible to feel one needs that) since cancer has returned and next lof of chemo will cause hair loss so immediate sign for the outside world.

    After the operation I am sure it was raw foods, juicing, meditation, yoga, green tea and visualisations which helped me have clear scans for so long. Helfpul comment before surgery was by surgeon saying it would mean months and months of pain. Which was true. He also said it was a pity it wasn’t breast cancer as it could be cut off and dealt with. Unhelpful comment by registrar was some people resume work in 2nd month of work.. I tried but bloods went beserk so had to retire early from a job I loved causing financial implications along with loss of ‘position’ in my life. Felt guilty that I wasn’t working the way other cancer patients did.
    Hope this makes sense.xx

    in reply to: 4 year scan not too good. Please help #85395
    angelmar
    Member

    Thank you all and dear Gavin….I def hope to be at the next meeting and also hope to help man the AMMf stand along with Juan.
    I went to my oncologist meeting today with 18 questions. The registrar who initially saw me, instead of my oncologist, decided after my 3rd question to go and get my constultant as the questions were out of her depth. Conslutant so helpful and patient and went through everything with me. They hadn’t heard of Foundation One but were interested in it. Being referred to see if Cyberknife might be appropriate but told me it would have to be privatelly paid for. Only one in UK is in London bought for the NHS but until it has been paid for with private patients the NHS cannot use it. Seems that the problem with my growth is that it is in the portal vein area where original op was tied up. Glasgow funds patients to go to Glasgow Homeopathic hospital direct referral from GPs. as does Aberdeen. All other patients in Scotland need to find a supportive GP to secure an exceptional referral which is then considred by the Local Authority. Consultant feels homeopathic treatment would not be contraindicative to chemo. Signed up for chemo to start in 2 – 3 weeks. Daughter will come over here….advised that each hour of flying increases risk of blood clot by 20% and if you have cancer or chemo then that is likely. Sorry if this is garbled but want to thank you allxxxxx

    angelmar
    Member

    I am searching through all of the chemo links that amazing Percy has put on the website. Time and energy means I’m asking this though am sure the answers are all there.
    I am being offered Gemcitabine and cisplatin chemo. I have heard that Cemcitabine and Capicetabine (Xelolda) is as good with more tolerance. I already had Xeldo which has kept obvious scan results clear for 4 years. Any advice?
    Love to all affected in any way.x
    Angela

    in reply to: FOUNDATION ONE RESULTS #84928
    angelmar
    Member

    Thank you Duke,
    Seeing consultant today with all this information.
    Tyring to work out if Gemcap is a better option to request than Gemcitabine and cisplatin.
    xx

    in reply to: FOUNDATION ONE RESULTS #84926
    angelmar
    Member

    Dear Kirsty,
    Did you have to pay privately or was this all done via your gp or the oncologist at the hospital?
    I am wondering if I could ask my oncologist but don’t think they would take a biopsy as they say it’s too difficult to ensure they get the right spot, and alos might ‘start something off’.
    Thanks in advance
    Angela

    in reply to: 4 year scan not too good. Please help #85393
    angelmar
    Member

    Thank you to all. Today found out about applying for mistletoe therapy. Not sure if I can get it but NHS is funding it for patients in Aberdeen and Glasgow. Some Lothian patients are getting funded too to go to Glasgow. Using ph sticks to test urine/saliva ph to try and keep as alkaline as possible. Maggie’s Centre staff so helpful too so anyone in UK who lives near one please don’t be aftraid to step over the door of a centre. xx

    in reply to: 4 year scan not too good. Please help #85390
    angelmar
    Member

    Thank you so much. I have viewed posts over 4 years many times but not been able to reply so understand unregistered ‘seekers of hope’. Gavin – thank you for the email and I’m sorry things are so hectic for you at the moment. Marion, Porter and Duke – thank you for your comments. Just saying you want to respond but not sure how is incredibly supportive. I guess I was worried notbody wanted to contact me which reflects experiences I’ve had 4 years ago from ‘friends’. who distanced themselves from me on diagnosis. I must say angels on earth replaced those ones though.
    Daughter recommending bicarbonate of soda/organic lemons (100% more effecitive than inorganic ones). Had been told oranges not good as encourages cancer regrowth. Continuing with watercress juice and green tea all of which I’m sure has helped me over the past 4 years. Feeling it’s important to show love to my body and love to this mass. it’s part of me……..but also telling it that it can go away.
    On this site, we know exactly how others are feeling at different times. We don’t have to explain and that’s so vital when energy is short.
    xxto all

Viewing 15 posts - 1 through 15 (of 23 total)
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