Forum Replies Created
My heart goes out to you – I am so, so sorry for your loss. If advocay could have helped your husband, he would be alive.
Sometimes words cannot express feelings, I truly hope you can find the strength to find a way to cope with this loss
Kind Regards Martina Rooijakkers
I received an answer from the Scottish contact:
Any suspicion should be seen in Scotland < 28 days. The Scottish contact can help you, she needs to know where you live etc, you can contact her – as said in my PM, or PM me with your contactdetails, so I can send your info to her Privately. Marti
Have just send you a private message-through MIF.
Ok I understand your situation a bit better, hopefully you will receive a phone-call Monday morning to come in soon, but if not:
Yes we can send Personal messages – through MIF, and I will PM you. Will speak to the chairman of the ocular melanoma group tomorrow or Sunday, so will mail you these coming days,
Personal I have no expertise in ocular melanoma, I am a fellow-patient (skin melanoma) and patient advocate for the Dutch Melanoma Society.
I shared my thoughts about your story on MIF with our Dutch chairman for the Ocular Melanoma group (Dick Plomp), who I asked about getting more testing done soon ( ultrasound, OCT, Fluorescein angiogram) before you can see the eye-oncology specialist three months from now.
As I thought he also advised to get an appointment with an ophthalmologist as soon as possible, it is our belief to react asap on changes of chorioideal naevi, and probably an ophthalmologist can determine if there is any suspicion for an chorioideal melanoma, and can advice you further.
Dick Plomp also has the email address of one of the Ocular melanoma specialists in the US, he has a contactadres in Scotland and there is a European board for Ocular melanoma as well. It looks like you should get an advice of an ophthalmologist.
Ofcourse we both hope its just a benign neavus, just in case….
please remember its as in a plane where pressure drops. Put your mask on yourself before helping others. Please place yourself at priority 1. And if there is no time to look at your MIF, do know there are others that can help out. Very few have your knowledge, but I am sure, that for 1 or 2 days ; all your supporters can help out with your forum.
My heart goes out to both of you and I am hoping for the best,
Happy you took your well deserved break, and came back energized, a lesson learned.
Hopefully you will have anything planned for the coming time. Sometimes looking forward to something special helps as well. Al though it sometimes needs organizing ahead.
Your last sentence brought a smile on my face as I am sure it must have warmed your hart.Very pleased you are even called my love. I understand the impact of a disease that takes away body and mind. Hope there Will be many more of these moments.
Youre husband is unfortunately ill with this dreadful disease thats taken its toll on you both, but
hè is lucky to have you fighting for his best interest. Its hard to realise there is no treatment but also hard having a need to fight for his Well being.
And yes I did read your post About taking time for personal Medical and dental care for the caretakers- but maybe also time to have a haircut, a massage , a relaxing cup of tea with a friend,or anything wat brings you relaxation.
Best regards Marti
Often think of you and your husband’s condition. Admire your attitude even more, how can you look after all your grateful forummembers, whilst your husband is – and ofcourse yourself- in such a dreadful situation.
Often people say, that memories are valuable, and cannot be stolen, but yes there are conditions where even fond memories get lost.
My heart goes out to you and taken such excellent care in such difficult circumstances. I read you spoke to the hospice chaplain, which means your husband is in a hospice- which is very often a blessing surrounding, but ofcourse difficult.
Wishing you and your husband all the best
Thank you for your update about your husband. Thankfully he is in an excellent care, altough hard to accept all these changes. My heart goes out to you both.
Your husband is lucky to have you as care-taker, I wish you all the best in this battle.
Us, as melanoma patients, are lucky to have you as the center of MIF . I do wish you all the strength of taking care of this Lewy body dementia which strikes the entire family as of all these serious diseases.
Sorry for my late answer; just read your mail. I am a bit confused; your sister wants an otoplasty for removal of glands. Why does she wants an ear reshaping ?
I had a melanoma on my outer ear, and operated twice, first a small piece out, followed by taken out a ‘pizza’ slice out of my ear 5 years after recurrence of the melanoma.
This ear is now much’ smaller’ and is facing forward,and yes there is a difference. Since people can hardly see both ears at the same time; the difference is hardly noticeable.(At least thats what people tell me)
I am still feeling ‘lucky’ having the melanoma on an outside part of my body, hardly noticeable in the first place, secondly:it does not affect my life.
But: even after 3-years surgery this ear is still very sensible,for example sleeping on that side is still not possible, wearing sunhat or glasses, is still a challenge. I would be carefull having another surgery – for reconstruction ear.
Of course I don’t know the extend of her ear surgery; just want to tell you my view.
Can only tell you what happened to me in 2009 in my country ( The Netherlands), I was a female 57 years of age at that time. It does not happen on ears to females they told me. I was seen in melanoma center.
Melanoma on outer ear helix Breslow 0,64 ( second opinion Breslow 0,6), on the rim of the helix, no mitosis; and was advised in 2009 to have a sentinal node procedure, and ofcourse a wide excision at the same time, by an ENT onc. surgeon.I knew that a sentinel node would be performed at starting from 0,75 Breslow, but I was given the choice any way. I did go for the sentinel node procedure and the WLE.
They wanted to do an excision, as a pizza slize, so I would end up with a smaller helix, but a little facing forward. I had no hesitation, do whatever is needed.
When I woke up after the procedure, they had changed the original plan and only took a small piece of the helix, 0,5 cm on 3 sides of the melanoma. There found some melanoma cells in the node afterwards, but not enough to call it a micrometastasis.
All went well, I did get all the check-ups – untill 2014 when there was a tiny spot ( as a blackhead) in the scar, almost hidden within the scar. To cut a long story short; after a biopsy which was inconclusive, they did a spie size ( like a pizzaslize) out of my outer ear. After healing its hardly noticable, but even if it was; I would not care about it,to top if of: people hardly can see both ears at the same time any way.
Since 2014 nothing else changed so I consider myself very lucky, I am down to check-ups every 6 months again with ultrasound of the neck.
Take care,find a melanoma center, follow your gut feelings and simply have it done.
Since I dont hear to much about melanoma on the helix, would you please let us know how things are going for you?
Dear Catharine, I admire your approach, very logical. And you are right, maybe the clinical trial will help to change the path of this dreadful disease. I can imagine what a blow the diagnosis must have been.
Hopefully you are surrounded by family and friends to help you and your husband getting through all the challenges that accompany the Lewy Body dementia and maybe a forum for this disease where you can share and learn from others, and I hope you will find a platform as well organized as this forum to help you cope.
Thats exactly what I am getting. Insurance is no issue; I live in The Netherlands, so whatever the doctor orders, will be paid by insurance.
Thanks again dor your prompt reply.
Thanks for sharing, do you know how frequent “the high-frequency sonography” needs to be done, according to this study ?
I am getting a 6 months sonography frequency after 2014.
(stage 1A 2009, Breslow 0,6, after a local reccurence in scar tissue in 2014 I suppose I am in stage 3, but staging is not confirmed by my doctor, who said that my risk of recurrence is still the same as the initial diagnosis). This does confuse me, but hey I gave up asking. I have learned that staging nor percentage holds information for the individual.