Lymphedema support group

Dear Ariole,
I’m sorry that you are experiencing discomfort at present in relation to your leg and the onset of lymphoedema after your groin dissection. I hope that you will hear from other posters soon. If you would like to speak with a cancer nurse specialist or would like further information and support around this you can call us on the National Cancer Helpline Tel. 1800 200 700, our lines are open 9am-7pm Mon-Thurs and until 5pm on a Friday.

We could also direct you for further support to Lymphoedema Ireland which provides information and support for people with lymphoedema in Ireland - [url:38sjvq1o]http://www.lymphireland.com[/url:38sjvq1o].

They also regularly arrange patient information days. Finally we have a factsheet about lower limb lymphoedema which may be useful and it has further resources suggested on the back: [url:38sjvq1o]http://www.cancer.ie/sites/default/files/content-attachments/patient_in…]

If you are considering any additional treatments it would be wise to discuss this prior with the physiotherapist currently looking after you so that she can advise you further.

I hope that this information may be of some help to you.

Kind regards,
Cancer Information Services Nurse

Nice post!

Hi Ariole,

I've only just seen your post. It seems that it's been months since I've been on this sight. I can't believe how the time has flown by so fast!

I have a few things to say about lymphedema, but I thought that I would check in with you first, to see how you are doing now? (hopefully you are in a better place )

Anne

Hi Anne,
I am doing well, given the all clear and started my 21st week of Interferon biological therapy. Luckily I have gotten the lymphedema early, wearing a compression sock every day and the swelling hasn't gotten worse
Hows all with you?

Hi Ariole,

Good to hear that your lymphoedema is under control. I cannot remember what I have said or not said to you in the past, so apologies if I repeat myself here!

I panicked alot over lymphoedema in the past. Though I never really had visible swelling, I had a lot of discomfort in my thigh which got worse over the course of a few months. I put the discomfort down to lymphedema, without doubt in my mind. The discomfort/pain became very frustrating and upsetting to be honest. (I'm sure the occupational therapist in the hospital thought I was a nut job!)

... I think I told you that I had a recurrence before Christmas, which manifested itself as a lump in my thigh. It ended up that the deposit was knitted together with a nerve. This is why I had so much discomfort. My surgeon said he had never seen anything like it before. Meaning, it obviously was a rare occurrence. I doubt you should worry about such a thing! So, I'm not sure I ever had much of a problem with lymphedema.

I have been advised not to continue with the lmd massage or the compression stocking anymore, because of the activity in my leg. I have had two more recurrences since, both in my leg. I am due to start ipi soon. I was not expecting this. I was slow to report my situation to you or anyone else who has been of support to me online. It isn't what people want and need to hear. That said, I know my body is tired. I have rheumatoid arthritis and I've had a few other things thrown in over the last few months to add, so I'm not the healthiest candidate for a fighting immune system!

I am feeling well and am looking forward (in a way) to starting ipi. It will be good to feel that something is being done. I continue to get out and about every day and enjoy happy times with the important people in my life.

I wish you well on the rest of your interferon treatment. By the way, have you had many side effects?

Keep in touch,

Anne

Hi Anne,
Sorry to hear about all you have been through, they were tough times!
You sound so positive about it all now and are on the road to recovery. Good luck with the IPI, I was asked to be a clinical trial candidate but following tests the melanoma wasn't a match to IPI, hence starting Interferon.
The first month on the treatment wasn't very nice, suppose the dose was much higher than now and was injected directly into the blood stream 5 days per week for the month. Side effects were hot sweats, shivering, nausea, headaches, change in taste, sores on my tongue, low energy levels and low blood counts where I had to be put into quarantine to avoid infection. The side effects have reduced back now as I am on half dose and have subcut injections 3 times per week for the next 48. My hair started falling out about a month ago and is very fine but I have it cut back to try and thicken it up.
Good luck again on the treatment and take plenty rest when you need it.
Keep me posted with how you get on and I will be thinking of you...x

Ariole

Dear posters,
We are pleased that this message board maybe a supportive place for you to discuss your concerns and experiences with others who have cancer or are caring for someone who has. With this in mind we would like to remind some posters to read the terms and conditions of usage prior to posting which prohibits the use of the message board as a means of advertising of products and services. Please see this link for further information viewforum.php?f=10

Kind regards
Cancer Information Services Nurse