UK Skin Cancer and Melanoma Patients

[rainman]

Hi,

Just joined the forum. My partner was diagnosed with MM a little over a month ago. She had an excision on the mole which confirmed MM and a second excision about two weeks later to remove more tissue. The surgeon was pretty upbeat at the second meeting saying that he had excised the melanoma completely but just to be on the safe side would perform a CT scan with contrast. At that point he said that all the lymph nodes were clear.

The CT scan showed she had a metases on the liver and one near her kidney behid the stomach. He seemed pretty sure that they were MM Metases.

Qustion is has any body else had this kind of result? And what were their experiences like?

[Alison..]

Hi, sorry to hear about your partner.

I think I'd recommend, at this point, that she starts looking at finding somewhere to get a second opinion from. It sounds like things are moving quickly, and very soon she will have to make some decisions on treatment. It may well be that her team are very good, but another view never hurts

Usually surgery is recommended where it is possible, but where there are several tumours then chemo or other "systemic' regimes are considered.

A PET scan is sometimes used to get more confidence that something is a metastases. I've never had one though.

You must be feeling shell-shocked. I hope you manage to keep it together. Usually things feel a bit better once things get clearer, and it is less a waiting game.

Alison

[rainman]

Thanks for that Alison. Since I last wrote we have had an appointment come through with Prof. Pulan Patel on Tuesday (28/04) Hopefully things will be a little clearer then. Must say last few days have been hell since the Dermatologist intimated that not a lot could be done!! Will keep posting to inform you of progress.

[ally]

We were under Poulam Patel at Nottingham City hospitals - we found him to be very honest, straightforward and most important of all, knowledgeable of his subject. Best of luck for tomorrow. Let us know how you get on.

Very best wishes.

[rainman]

We went to see Prof Patel yesterday. Very nice man, honest,straightforward and knowledgeable. We came away feeling much better although the news was not any different from that which we suspected.
He has ordered am MRI scan of the liver to check that the lesion is a secondary, and also of the cercix were they noticed a slight thickening of the wall.
Fortunately his senior registrar was a Gyni specialist filling in as a locum ,and he managed to carry out a quick internal examination which showed a lot of Thrush in the cervix, but he thought there were no "lumps". The Thrush is possibly due to the heavy dose of anti-biotics recieved as a precaution after the second exision. This may well have skewed the CT scan findings.
Anyway we have a second appointment on May 12th for the results.

[rainman]

Cautiously good news. Prof Patel phoned my partner today to say that she needn't attend her appointment today as the MRI scan indicated that the suspected secondary on the liver is in actual fact not a secondary-not quite sure what it is!.We are still keeping the appointment though just to talk things through with him. Strangely though we still feel more scared now than we did!!

[ally]

Reasonably good news Rainman. Just to let you know you are not alone and we are all thinking of you.

[rainman]

Just an update to this post. Went to see Prof Patel yesterday(29/09) he felt the lymph nodes and found an enlarged gland under the left armpit-which I suppose is the node proximal to the original site -a malignant mole under the left breast which was excised. We can feel the node now and it does seem rather large. So a bit worried at the moment.

[Janet2]

Hi Rainman ,

Thanks for the update on your partner. I am sorry to hear that Prof Patel found an enlarged gland under the armpit and I can appreciate that you are worried. I hope it turns out to be nothing sinister. Please keep us posted, if you can, as to how your partner goes on.

Best wishes, Janet

[rainman]

Really bad new yeterday. We thought we were oing fo a consultation t remove the swollen lymph node, but the results of the CT scan show that the cncer has spread t the verebrae and liver. How fast can tis thing go!

[seanty]

Sorry to hear your news. I expect they will be talking about chemo next. If the standard chemo doesn't work, there is a very promising new drug called PLX4032, RG7204 or RO5185426 enrolling for clinical trials.

[Pip]

I am really sorry to hear your news today rainman. God that was quick.
I see from your postings that you talk like I do when referring to my husband and his melanoma. You use the word 'we'. I know that this a journey we take together as that is what our marriage/relationship is about. Your strength together is invaluable to you both.
Do get back to the forum anytime for support or chat.
With best wishes
Pip x

[rainman]

Thanks for the messages of support-much appreciated. I think at the moment we are still somewhat in shock. Denial really. Waiting for the MacMillan nurse to get in touch and Prof Patel is going to ring us tonight. to plan the couse of action presumably.

What information do we have on these new drugs?

[seanty]

My blog post here includes links to more info on the drug, including the number for the current trial on the worldwide database, Study ID Number: NP22657.

Note that the trial is recruiting from those who have had no responses to the standard drug, dacarbazine (or its close relative temozolamide), and only works in those who have a certain mutation in the tumour cells.

There are those on here who have had good responses tot he standard drugs, so this is a second line of defence.

[Janet2]

Hi rainman,

I am very sorry to hear the bad news and sincerely hope some chemotherapy treatment can be started soon. Also, I hope any treatment helps a lot.

The problem with melanoma is it is most unpredictable and it is difficult to know what it is going to do at any time.
Best wishes, Janet

[Debi_D76]

Hi Rainman,

I just wanted to let you know i understand how you are feeling. We,my husband and i, are going through the same turmoil as you. You are right, it is teriffying how quickly this monster spreads!!! My thoughts are with you and i hope any treatment used is successful.

Love Debi x

[rainman]

Wish us luck! Today Pauline goes into hospital for the removal of the lymph glands under her armpit.

[seanty]

Be Lucky!

[Shaz41]

Best of luck for Pauline and of course yourself.
Sharonxx

[baycabbie]

I am one of the lucky few that is enrolled in clinical study NP22657 at the Moffitt Cancer Center in Tampa, Florida, USA.I have been in the study 6 weeks. I had my MRI brain scan and CAT Scan yesterday 12/14/09. 6 weeks ago, I had 14 tumors that could be felt through my skin. One on my forehead that was getting quite large. One in my right cheek on my face. 6 on my back in my right shoulder blade, and the rest in my breasts. I have stage 4 milgnant melanoma that started with a mole in my lower back that I was born with. I am 63. So in lay terms, I will tell you what I went through to get into this clinical trial with R05185426. First they put me through chemo every 3 weeks. It did nothing but make be sick, also lost my hair. Had no impact on the melanoma tumors. In fact some more tumors popped up during the chemo. They then told me they wanted to see if I qualified for this study. First thing they did was send a part of a tumor and a bunch of dry slides to a LAB in North Carolina to see if I had the mutated type of melanoma. You only have a 50-50 chance of having this mutation. Well, I had it. First good news I have had in 2 years. You then have 21 days to finish the quailification testing, that includes CAT Scan, Brain MRI, many, many, blood tests, and many many EKG's. Once I was fully qualified which was 6 weeks ago I started the pills. You take 4 pills every 12 hours. The pills are quite large, so I take them one at a time. I started the pills on a Monday. On Wednesday, two days after the first dose I was in the bathroom getting ready to shave. Well, I just about fainted. The tumor on my forehead was gone. The one in my right cheek of my face was gone. When I say gone, I mean they could no longer be felt. The larger tumors on my back and front were now so small I could hardly feel them, and within a week, they could no longer be felt. What this all means, I don't know, but we all thing it is positive. We will have the results of yesterdays CAT Scan this Friday, and that will tell the story. There are 9 of us in this trial at Moffitt and I am the oldest. These trials are very disciplined, very strict. All 9 people in the trial have acheived the same results I have. They keep us seperated. So have never talked to any of them. Side effects for me from the pills have been very sensitive to the sun, so am using a sun block. Other than that, I have never felt better. If anyone would like to email me, write to baycabbie@aol.com and will try to answer any questions about this trial for you.

Good Luck to all, Roy

[rainman]

Just a quick update. My partner had a radical dissection, she spent about five hours in surgery due to the fact that they had to remove more tissue than they thought plus she had to go back into theatre to have a bleed repaired. She recovered well from the op. but things started escalating from there on in.

She developed a swollen abdomen due to fluid collecting from the malfunctionig liver, causing her a lot of pain. The fluid was drained off in the course of a week (15 ltres). It was decided that she should go onto chemo pretty quickly since the scan following the drain showed that the tumour on the liver had more or less tripled in size over the course of eight weeks and had spread to her lower pelvis and hips, plus secondaries from the fluid had invaded her peroteneum. She has lost such a lot of weight (down from 10st to 8st in a matter of weeks) due to the fact that she is naseous and can't digest normal food. She is currently on a constant dose of anti-emetic delivered by a syringe driver which seems to be helping plus morphine so she doesnt feel much pain. We can only wait and see, she is booked in for a second dose of chemo on Jan 4th so fingers crossed. By the way Happy Christmas everyone.

[Janet2]

Hi rainman
I'm very sorry to hear that your partner is having such a bad time and sincerely hope the chemotherapy helps her.
Best wishes, Janet

[Janet2]

Hi Roy,
I am pleased you were able to get on the clinical trial at the Moffitt Cancer Center in Tampa and that the treatment seems to be helping you. I hope your CT scan results are good. Please keep us posted, if you can, as to how you go on.
Best wishes, Janet

[elliott868]

Dear Rainman

Thinking of you and your partner and wishing her all the luck in the world. Take care and merry christmas to you both, Sharon E

[Lucy]

Hi Rainman,
I'm sorry to hear your latest. It sounds as though she is very poorly at the moment.
Has anyone suggested you take part in a trial?
There are a few your partner could be eligible for, and they tend to have a better chance of success than the standard chemo. Some of them are mentioned on the Cancerhelp pages for melanoma, or you could ask Prof Patel if he thinks she would qualify.
I wish you both a restful and pain free Christmas.
Thinking of you
Lucy