Interferon

December 23, 2013 - 22:49

Hi,
I have to start Interferon treatment on January 6th. 4 weeks of 5 day high dose in hospital and 48 weeks of 3 day low dose at home.
Anyone anything to input in relation to their experience?
Thanks
Ariole

January 5, 2014 - 02:21

Hi Ariole. Sorry I'm only getting back to you now. I want to wish you best of luck with your treatment on Monday. Interferon was never mentioned to me as an option. I was stage iiib last time I asked. I have had recent surgery for a recurrence but have not had a discussion with my consultant as of yet so don't know has my stage changed in any way. With stage iiib the only option given to me was 'watch and wait'.

In another post, I think you asked about compression garments. To be honest, I wore them all the time during the day. I had alot of discomfort in my thigh that got significantly worse coming up to my recent surgery. I always assumed it was lymphoedema. It became what I'd call real pain eventually and was really getting me down. It ended up that the recent melanoma mass was knitted together with a nerve. since the surgery to remove the melanoma this pain has completely disappeared. My point is that what I thought was a symptom of lymphaedema all along was infact to do with a melanoma recurrence and a nerve. The compression garment definitely helped camoflauge the discomfort. Now, I can truly say that I'm not sure anymore about the symptoms of lymphoedema. My leg definitely feels heavy from time to time. My therapist moved some fluid for me yesterday but now feels I probably don't need to wear the compression garments unless going for a long wallk etc. Time will tell but for now, all seems well.

As I already said, best of luck with the interferon. Let me know how you are getting on.

Anne

January 25, 2014 - 13:28

Hi Anne,
Sorry for the slow response to your previous post. How are you doing now and how did your last surgery go?
Well, went to see a Lymphodema physio specialist in GUH and I was must say she was very good. She showed me how to self message and prescribed me with a compression garment. The garment has worked wonders and only have a little swelling accross my foot and toes now. I was speaking with the physio only last week and has recommended a tighter garment to see will it shift the lymph accross my foot.

Besides all that I started my Interferon treatment 3 weeks ago and have one more week of it in hostital and then home injections. The way it works is 4 weeks of 5 day injections in hospital and 48 weeks of 3 day injections at home. The first day of week one was terrible, the side effects hit me hard where I was feeling sick, headache, shiverring and then temp of 39.5C. Once I got over the first night the body didn't seem to go into shock as much and was prescribed meds to relieve it also. Only thing now is my white blood count does be low, leukopenia, and I do have to go into quarantine as I am prone to infection and I have no energy.
I cannot wait to get week 4 over and then I can start to live a kind of normal life again once I master the home injections and maybe get back to a working life again.

Ariole

March 11, 2014 - 23:17

Hi
I was recently diagnosed with stage 3 melanoma skin cancer, I'm 34 years old, mother to four children and am lost and confused as to my diagnosis and treatment? I have been reading up and reading others story's and each is different so I can't compare to my own experience. I had a mole on my back(near shoulder blade) for years but 2 years ago it changed and got bigger, but I only went to my doctor about it in July last year when it began to bleed. I had it removed in dec 2013, and the results shocked me! So I was taken in to have the 2cm wide excision 2 weeks ago, they also removed lymp nodes from my under arm, and won't have my results until the end of this month. To say I'm anxious is an understatement, I would just like to know what I should be doing. I have had severe pain in my arm and shoulder since, and have restricted movement, but I know it's early days yet. I've seen 2 dermatologist and a surgeon who all explained my op but not the aftercare, sun block, UV protection, and with this recent good weather I'm afraid to go out! I'm a natural redhead with pale skin so I naturally don't enjoy the sun. I'm seeing my surgeon on the 25 February and the dermatologist appointment isn't until July 2014. What should I be watching out for ie: other possible moles, lumps etc. I'd appreciate any help or advise, thanks
Redscorpio

March 13, 2014 - 18:06

Hi Redscorpio,
Your story sounds just like mine except I had a leasion on the top of foot July 2013. It's all a waiting game and I know it is hard but try and keep positive.
Following surgery, removal of all my lymph nodes in my groin and various scans I have been given the all clear back Nov 2013. Following that my Oncologist advised that I take Interferon treatment for the year as a precaution. I am week 10 into the treatment and life is getting better.

Don't get me wrong but I had my bad days but were more good than bad.
Good luck with the results and keep us posted.

Regards,
Ariole

March 13, 2014 - 23:15

Hi Ariole
Thanks for the reply, I feel much better now after reading a few posts here regarding treatment. Im sorry I didn't use this website before, as I was in shock for a few days and then I didn't really want to face up to it, I was told I may or may not require any further treatment when I was first diagnosed but when you hear the big C word, it frightens you.
Your treatment sounds tough, do you have children etc. I found it hard trying to get the kids ready for school and things as I could only use one hand for a few days after the surgery. Do you have any side affects from your injections, if you don't mind me asking! Also after your diagnoses how long before your treatment started? I'm supposed to get my results next week but with paddys day my app was put off until 25th. I suppose it gives me time to enjoy another week with the kids before treatment. My family has a history of bowel cancer, both my dad and his mother had it. When I was talking to my doctor he suggests that I was tested for that too, which is terrifying. My dad got the all clear 3 years ago after chemo and a new op which ment he didn't need the stoma bag but my gran found it too late and after chemo and radio she was sent home, she died about 15 years ago. I'm attending at James hospital in Dublin as I live in the midlands. I appreciate you taking the time to answer my post and I hope your doing well.
Kind regards
Redscorpio

March 14, 2014 - 00:49

Hi Redscorpio,

I'm sorry you have found yourself on this site. The first few months after initial diagnosis are very tough, in every way. I am just over one year since my diagnosis. I feel I am a completely different person now in how I am coping with having melanoma in my life. In my experience I had no clue about melanoma at the start (as is the case with most people!). It was very hard to find support from people who were in the same situation as I was. Most people seem to think melanoma is simply a cancerous mole that is gone when taken away. I'm sure I don't need to go into details about the anxiety, fear, loss of control, etc. etc. that comes with being newly diagnosed.

One year on, I am telling myself that I am simply 'living' with melanoma. I have learnt not to let it control my life. You cannot wait around for it to return. You will learn, in time, how to do this. A lot of the world of melanoma involves waiting, waiting and more waiting. It is the worst thing ever!! I have become genius almost at pushing melanoma away from my mind during those endless waiting periods, between appointments, scans, etc. etc. and getting on with enjoying my days. I like to do what I like to do and am good now at remaining calm and avoiding stress. (A.K.A - choosing the easy life!!)

I believe that in time you will learn to live with melanoma too and life will continue to improve, as Ariole has also mentioned. To be honest, I have had recurrences and am in the middle of my own dramas presently. I'm not really able to discuss it all at the moment as I can only deal with things one step at a time and I am probably in denial a bit now. Once again, I am finding myself lost in the unknown with melanoma but I keep reminding myself that it's one day at a time and one step at a time. I try not to look ahead too far. I will learn to adapt again and move on with confidence( hopefully!)

I really don't like mentioning here that I have had a recurrence as I know people want to read happy and hopeful stories. I am hopeful. I think, as you said, every story is different. My dermatologist told me at one stage that one of the reasons why melanoma is so challenging to treat is that it is completely unpredictable. I choose to take that as a good thing. There may be nothing to worry about. No-one can know which way their melanoma is going to go, not even the experts. So I try to not look too far ahead.

So, my advice is relax and give yourself a chance to catch up with everything you have just gone through. I didn't believe it myself at the beginning that the panic would go away. It is early days for you and you will feel better and more relaxed in time. Don't underestimate the feelings you have been feeling. The beginning was the worst time for me. I almost went crazy from anxiety and fear. All that said, I am glad to say that in the last few months I am happier than I have been in a long long time I have found balance and joy in the simple things. Children are great therapy. They teach you how to enjoy life and live in the moment!

Also, re. the physical symptoms - I was in a panic about every ache and new feeling I experienced. My doctors were mostly never overly concerned about my own concerns. You need to bear in mind that you have been through a major surgery and your body needs a few weeks to recover from that alone. Two weeks is a very short time. Things will feel very different, you will get pains and you will be afraid. Obviously things can go wrong so for peace of minds sake, check out any concerns you may have with your g.p. or specialist.

I wish you all the best with your results. Keep the chin up.

Anne

March 14, 2014 - 00:57

Hi Ariole,

Just a quick note to apologise for (once again) the delay in responding to your last message. If you have read my post above, addressed to Redscorpio, you will see that I am going through my own melanoma 'stuff' at the moment. I haven't been in the right headspace to write to be honest. It is nice though to be able to support others.

I am so glad that life is improving for you and the interferon is going well. It is great to, once again, get back some normality in life! We take so much for granted!

I wish you continued improvement. Take care,

Anne

March 14, 2014 - 11:04

Hi Anne
Thanks for your response, I feel more informed now from your responses, than the leaflets they give u in hospital! I like to plan ahead and not knowing possible treatments available made me feel bad especially when family are asking you what's going on and I have no clue! Anyway I'm healing well, the bruising is gone and I even got out and started back driving yesterday, which was great!! I'm hoping you both enjoy the long weekend and look forward to a few chats here, thanks Anne & Ariole

March 15, 2014 - 03:16

Happy driving! That'll be a great boost for you ... also, I know how frustrating it is having to accept that there are no real treatment options for Stage 3. ( I am referring to your comment about family asking questions) It's a real bummer! Personally, I came to terms with having no treatment and I grew in confidence with the 'watch and wait' plan. I also grew to become very confident in my care team with time. (I think it is so important to be happy with them.) It all becomes easier with time and you will know what's right for you when you need to. Glad you are feeling more relaxed and upbeat

Enjoy the weekend

Anne

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