Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

ipilimumab/nivolumab combination

KTatHome
Posted by

Hi Jules,  sorry to hear of you trip to hospital, I’m hoping that by lunch time the docs have done their rounds and you are now being sorted and feeling a bit happier. If you have to stay in I wonder what the previous occupant of the bed order for your lunch, and hope you have found an electric socket to keep what ever device you are using charged up.

My best wishes to you Jules

KT 

Ritchie R
Posted by

Hi Jules must have been a bit of a shock , on top of this with the severe weather , 

Ive had two stays in the hospital for 3-5 days per time  whereby the levels go down and then back up .

It’s so frustrating for all of us.

My consultant did say there was an additional drug they could give if necessary but haven’t gone down this route, Don’t know if this is suggested to all.

Hope that all gets better over the next few days 


Best wishes 

Ritchie R 

Jules Somerset
Posted by

Hi Richie......yes this is my second stay, the first one was two weeks as they diagnosed what was going on before they could treat me, at least this time they knew what to do. They had me on 1mg per kilo of steriods, but alts still rising, now at 350. So they have doubled this to 2mg, hopefully this will stabilise it, will know more tomorrow after bloods, but thanks for your info....yes it’s so frustrating isn’t it, you feel like you can see the light at the end of the tunnel to re start you streatment.....then, wooosh, back at the beginning, like a bloody game of snakes and ladders!

I also got my scan results, not great, but not bad.....all cancers had enlarged by 1mm, after two Ippi/novo treatments, but of course with this set back, I’m now 4 - 6 weeks off starting anything else.


I don’t know about how you two feel, but for me it’s the uncertainty and waiting that I find most difficult, if only we all had crystal balls

I hope you and Tracey are fairing better than me at the moment, fingers crossed for you both and keep me posted 


Regards Jules

Ritchie R
Posted by

Very frustating I’m sure 

I started on 2mg per kg plus the other drugs,  There is no logical explanation why the levels go down then go back up when things look under control. This is what through me the first time .

Whilst my levels are down at the moment it does knock your confidence they may go back up again ?


Meanwhile no  further treatment  at the moment for the Melanoma which does bring uncertainty for all of us. Two years down the line and we still soldier on. 


I decided after 2 months to try the sleeping tablets and they have helped the last few nights  , Even made it the pub to see the lads albeit with a couple of shandies .


Ive been looking at  the approach to this is in the USA and will bring this up at a future consultation .


Every one of us is different in our approach but the uncertainty does get you down .

My approach has been to keep active at work if possible but not full on, walk the dogs whenever possible and still socialise with friends and family .

I’m sure this has helped mentality .


BR

Ritchie 






BigT59
Posted by

OH MY DAYS!  JULES!  I cannot believe you are back in hospital and the ALT level has risen so much.  I am gutted to read this, truly am.  I must be a little naive to think it would just continue to come down and stay down.  Thank goodness they are on it. Know what to do and will correct this.  Can you tell me, I know you are in the UK, which area?  Has anyone mentioned Micofenalate to you?  I take it with the steriods daily, its an anti organ rejection drug and this seems to be working well with the steriods.

Now your scan result.  I was told last week there would be inflammation around the tumour areas on the scan and not to be alarmed at this.  Provided there were no new tumours, they would be happyl

My last update.  Bloods last Weds.  Due to snow hoped to do phone consultation but nurse said Dr wanted to see me in clinic in case new prescriptons were needed so i trudged up to Guys.  Said to see me when they see me and they did.  Head honcho too! :)

ALT 112 (down from 142 previous week). Micofenalate doze now 2 a day (halved) steriods down to 50mg daily and from Friday 40mg daily.  Omeprazole halved to 20mg per day.  However Thyroid is deranged (their words) and on the floor still having been sky high then crashed so the levothyroxine is now increased to 100mmg per day.  Woh! thats cocked me up,  feel awful on that.  shaky, racing heart, agitated.  Slowly getting used to it now 5 days in.  Scans booked for sometime imminently.  Next bloods Weds 14th, Clinic with results and scan results Thursday 15th. Dr. Did not rule out something else up their sleeve should it be required which is good to know going forward if needed. As for sleep! well I knocked the Zopiclone on the head. It was giving me about an extra half hour! Something changed this week. Either YorkshireTea Bedtime Brew or Options Hot Chocolate and Dr said no sleep in day longer than 20 mins! so bed 11 - 11.30, relax, read, and managing to sleep till 4.30, amazing!!! run to loo get back in before I think too much and managing to go back off for an hour?  beginning to feel the benefit of this now after 3 nights, so hang in there. Just change something about the routine.  Also LUSH do a product called SLEEPY,  a blend of Lavendar and Tonka Bean moisturiser.  This on my hands and upper body is so calming.  Sorry Ritchie, believe you are in the USA? and may not have LUSH? but try another sleep spray? maybe? I found 2 paracetamol good but Dr wasnt happy and said two per day max as they affect the liver! oh! well! I'll stop those then!!!

My melanoma.  June 2015 primary Abdomen. Then SNLB clear (leaving lymphodoeama to rt arm) except it wasn't clear and they realised 6 weeks later at follow up clinic breast was abnormal and melanoma was found in node in rt breast.  Two ops to clear that  Dec and Jan 15/16 and removal of a bit of rt breast.  Clear Feb 16.  Oct 17 another Melanoma tumour in rt breast tissue (which I get discomfort in and the immuno is really having a go at that area!) and also lymph node in left breast. Hence Ipi/Nivo. 

Wishing you all well,  please update as and when you can.  Jules, hope your stay in hospital isn't too lengthy and you get back home on the oral steriods soon.  

One question, I keep forgetting to ask the team?  Can I have a drink, just a small, itzy bitzy one? just a shandy even??? Ritchie, youre giving me hope here!!!!  Also thanks or info on the drug above! will read!

Onwards everyone :) Txx

Jules Somerset
Posted by

Hi Guys......I’m sorry I’ve not replied.....I wasn’t getting any alerts through via e mail so though you had all gone quiet.....it’s so good to here everyone’s experiences and know your not alone.

Zoplicon works for me Tracey, but I’ll try LUSH too.....I am so sorry to here your really going through the mill too....it’s hard to keep positive, but that’s all we can do. Fingers crossed for your scan.


Richie what approach in America, I think my Onocologist has reached the same conclusion as yours about treatment, so really interested about alternatives.


Kat as always good to here from you....


So yes I am now on steriods and liver rejection drugs, have a biopsy booked for tomorrow ( sounds painful). And as of this morning ALT is static at 350 still, so no change and not going anywhere soon. No one told me not to drink.....and I told them I was, they didn’t seem concerned, but obviously with my liver ALT up. I’ll refrain. 


I’ll update you all after my biopsy, keep the news coming. 


All the best Jules x

Ritchie R
Posted by

Hi Everyone

I am based in the North West of England near Manchester .

I have relatives in the USA who keep me informed on the developments there which is where I found the latest treatment news and how they view patients with our condition


Usually this then introduced the UK .

Looks like we are all on the same anti rejection drugs /steroids but on different levels .

I have just started the sleeping tablets and found these helpful.


The key question for all of us is will the Consultants continue with the single drug therapy when the ALT levels are down to normal ? Or are they more worrried about liver problems ?


In terms of a drink my consultant said in moderation , 2 drinks maximum 

I have stuck with the shandies which has had no adverse reaction on my levels 


Regards

Ritchie 




Jules Somerset
Posted by

Hi Richie, can I ask what’s the thoughts in America re continuing treatment after multiple toxicity events such as we have had.......do they advocate continuation of immunotherapy or not?

interested as you said the UK tends to follow the states in policy


Jules 

BigT59
Posted by

Glad to hear that you are ok and things are gettng sorted for you Jules.  Hope the biopsy is ok and will be checking in more regularly for updates from both you and Ritchie.  

Try and look on the hospital stay as a mini break, no worries about cooking, just choose what you want to eat, read, relax, sleep and try and blot out everyone else!!!

Kep in touch. Tx

Jules Somerset
Posted by

Yes I do try to....I was here for just under 2 weeks last time,  looks like a similar stay again, been told I’ll be here this weekend, so Mum is brining Mothers Day to me.....bless her she’s been an absolute star ❤️

The biopsy wasn’t as bad as I thought it would be, although they did take 4 samples, about a week for the results apparently.  


In the mean time back to spa, Beacon Ward LOL  



Ritchie R
Posted by

Hi Jules 

I have researched cases where they have and some where they haven’t , everyone must be different 

Will check this out again 


Got more blood tests done today ALT was 38 ( last one 35 ) so little change ,results are good two weeks in a row so they say.


Steroids dropped to 30mg with rest of drugs continuing for another week.


Managed to persuade Consultant to bring the next CT scan forward to see what’s happening .


Ritchie R 

Jules Somerset
Posted by

Hi Richie. My consultant has absolutely ruled out any more immunotherapy for me. So once levels are under control. I’ll be taking the BRAF tablet. 

I’ll be really interested in what your consultant says and I have everything crossed for you for the scan.  


Glad to hear your stabilising. My lvls are starting to come down. Just under 300 atm. If this improves again tomorrow and Saturday. They may let me go Home for the weekend. Fingers crossed  


Jules x


KTatHome
Posted by

Fingers crossed for you Jules 

KT 

BigT59
Posted by

Morning guys. Checking in to see how you are. Jules I hope yu will have made it home. Let us know when you can. So sorry you’ve had to be re admitted. Oh this rollercoaster we ride!!

Glad the sleeping tabs are helping you and Ritchie. 

Dropped to 40mg Pred on Friday and again this has helped me so much. Hope it doesn’t affect the ALT.  I have PET scan and BRAIN MRI tomorrow. Bloods on Wednesday and results for it all Thursday. 

I managed 3 of my 4 ipi/Nivo infusions. Let’s hope it was enough to do what it needed to. Thinking of you both and looking forward to updates as and when.  Txx

Ritchie R
Posted by

Hope Jules has made it home , its no fun being in hospital waiting to see how the ALT levels react .

I got so fed up I asked my consultant last time if I could come in every 2 days for blood tests rather than stay in ? They agreed to this which gave me back some normality .

Good news BIG T you have dropped to 40 mg Pred, i am om 30 mg tomorrow but still on the other tablets for the moment despite the last two tests being in 35/38 respectively. Had CT scan Friday after asking for this to be brought forward , more bloods Thursday and also results of the CT.

Problem for me is i get lot of swelling on my shoulder back and front , also neck and arm from the operations,

Your always thinking is this  something else rather than from the operations,


Managed to get out tonight for Mother’s Day dinner with my two children ( they paid - great) any my wife 

Even managed 75 min walk with the dogs this afternoon. takes your mind to a different place,


It was good to get out for a normal night out which lots of laughs 


I’m sure we all had the PET/Brain scans , the Brain scan is very claustrophobic but we have do choice 

Is also manged 3 of 4 iPi/Nov combinations > How long do keep working for any ideas?


Last results they said results were betting but its been some time since the last infusion in December not so sure this time

Then will what happens depending upon the results this week ,The waiting is  a terrible time , i get terribly irritable which is  not really me .

The key Question once we are stabilised what happens ? Are all the oncologists taking the same approach?

I’m hoping to get a chance on Pembro but seems less side effects than the other but looks like different hospitals have a different view on this.


Big week for all of use and I will be thinking of everyone


Meanwhile lets be positive for the next week 


BR 

Ritchie