Crohn's and melanoma - advice on medication

[Mette - 71]

Hi, I am new to this forum. English is not my native language, so please excuse any misspellings and poor language.

I was diagnosed with Crohn's disease in januar 2014. Fortunately I seem to have a mild case of Crohn's. Symptoms have mostly been nausea, mild diarrhea, joint pain and fatigue. Two rounds with Entocort, both for three months, brought me into remisson, and I have not taken any medication since october.

In november I was diagnosed with melanoma, stadium 1a. Although the risk is low, I am deeply concerned for metastasis and new melanomas. I go to check-ups every third month.

Now my Crohn's symptoms are coming back, and I am not sure what to do. I will for the longest try to avoid immunosuppressive drugs. My GI wants me to try a Entocort again. He tells me that steroids do not affect my cancer-risk. But I am not convinced, since steroids also affects the immunsystem, and I don´t feel lik messing with my immunsystem right now.

Anyone else with the combination Crohn's/melanoma out there? What medication to you take? Grateful for any advice!

 

[24601]

Hi! Welcome to the forum!

I have no experience with melanoma myself but I do know that enteral nutrition is an effective treatment for inducing remission - and it's without side effects. It's what I would choose to do over repeated rounds of steroids even without any concerns about immunosuppression and melanoma.

A bit about enteral nutrition:
Enteral nutrition is used to refer to drinking complete nutrition drinks instead of eating normal food. Any complete nutrition drink like Ensure, Boost or Fortisip works as well as any of the other more specialized formulas for most people - though if you have problems with milk proteins or another specific sensitivity then you may need a more specialized formula.

Exclusive enteral nutrition (EEN) has been shown to be similarly as effective and quick acting as steroids for inducing remission - about 70-80% reach remission with a course of 6-12 weeks EEN. While they don't know exactly why it works (one theory is that it alters the balance of bacteria in the gut in such a way that it has an anti-inflammatory effect) it is a proven therapy, though not as widely used as steroids. It has the major advantage of avoiding the side effects that come with steroids and is actually better for mucosal healing.

There is a newer study that shows that you can get the same effect as EEN with 90% calories from formula and 10% from normal food - which is nice to know if you find it impossible to go without a little taste of food. There is another recent study that had people do 50% of calories from formula and 50% from a restricted list of foods. Study here and list of foods here. So that is a possibility too if drinking 100% formula is too off-putting.

Enteral nutrition can be used as a maintenance therapy too, alone or in combination with other treatments. The Japanese protocol continues 50% of calories from enteral nutrition with 50% of calories from an unrestricted diet. The European protocol is to repeat a 4 week course of EEN every 3-4 months, althought there are variations on this - for example 2 weeks of EEN every 8 weeks.

Good luck! Let us know how you go!

 

[wild_one353]

truth is it may even help the melanoma to have your IBD in control.

Get your diet and exercise right, you should be alright.

Viatmin d is connected to all cancers make sure you take 1000iu a day, and get daily exercise dont over eat and eat fruits like crazy. organic only.

 

[Mette - 71]

Thank you for response and kind advice, and for enlightening information about enteral nutrion. It`s much appreciated!

I will look into the enteral nutrition treatment for sure. It certainly seems like an alternativ worth concidering. My Crohn's symptoms are increasing, so I need to take som sort of action.

One would think that there would be someone on this forum that had experience with melanoma, as patients with IBD have a higher risk of getting melanoma. I guess I will just have to wait and see.

 

[24601]

I remembered this recent thread by a new member here who has had squamous cell carninomas removed and is concerned about choice of meds. I'm afraid that no one else on the forum had any input to give in that situation but at least you know there is someone else in the same situation as you - I don't know if that helps at all, because obviously none of us want to be in that situation, but you know what I mean, I hope

I think enteral nutrition could be good for you for treating flares and using one of the maintenance protocols would be significantly better than no treatment, and of course not treating Crohn's carries its own risks. Hopefully the enteral nutrition approach would work well for you. Do keep us updated!

 

[happy]

Well Mette-71 that would be me. IBD and melanoma. The melanoma was diagnosed a decade before the IBD. I used enteral nutrition and a full elimination diet for treatment for the IBD. I am in remission for the IBD and I have not had a recurrence of the melanoma. I still follow a very restricted diet. More details about my story can be found here:http://www.crohnsforum.com/showthread.php?t=31028

Welcome to the forum. May you soon find a treatment that improves your health.

 

[Mette - 71]

Thank you so much for your response Happy! What a nickname for someone with IBD and melanoma. Thats encouraging. And its also encouraging that you have not had a recurrence of melanoma, and has succeeded in gaining control of your Crohn's. It gives real hope and inspiration.

I read your story, and see that enteral nutrion and elimination diet are no walk in the park. I belive it demands systematics, patience and great willpower.

I've talked with my GI today. He tells me that Entocort is very low risk in the doses I take and recommend that I try another round, and that an operation probeably would be the next option.

However, I have decided to first try enteral nutrion combined with a limited food intake and strict diet after reading the studies 24601 reffered to. I probably will not get prescription for nutriton drinks from GI, so I am wondering if there is any nutrition drinks you can recommend? Is it possible to buy them online? They are really expensive in my country. I do not tolerate gluten and lactose, so I must find nutrition drinks without these ingredients.

Again - thank you for kind advice!

 

[24601]

Elemental 028 Extra by Nutricia is gluten and lactose free. There is a powdered version which I imagine will be much cheaper for shipping over the ready to drink cartons of liquid.

I believe it is possible to buy online. Sorry to hear though that you will likely not be able to get it prescribed though as these formulas are expensive. Was your doctor not prepared to prescribe a course of enteral nutrition?

Do keep us updated!

 

[Mette - 71]

Thank you for the tip 24601. My doctor was not exactly enthusiastic about trying enteral nutrion. I do not think it is a treatment they have a lot of experience with at my local hospital. Maybe he will give me a prescription if I push a little harder.

I have decided to wait a couple weeks before starting enteral nutrition, because I am going on a long planned trip abroad in just one week. The last week I have replaced a couple meals per day with liquids (homemade smoothies, proteindrinks etc), and otherwise kept to my "good foods" (rice, salomon, chicken breast, banana etc.). Right now I feel my symptoms are largely under control. Then I will start a more systematic enteral nutrion approach when I return from my trip.

Thanks again for tip and encouragement!

 

[happy]

I used VivonexPlus. It is available in Canada only by prescription--I am not sure if a prescription is required in other countries.

May you enjoy your trip with few GI symptoms.

 

[johntilo]

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