How to keep your immune system up before treatment, BRAF vs Interleuken 2

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8/12/2010 2:37pm
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Replies: 8

My mom was just diagnosed with stage 4 malignant melanoma. She is 54 years old. She  has the choice to go for the IL 2 therapy or the  option to do the clinical trial with B RAF inhibitor vs decarbazine and if it doesn't work she can THEN go for the IL 2 therapy. Our concern is that she may get sick or too unhealthy to do the IL 2. Can anyone on her tell me how sick you get on this clinical trial and if it is worth trying before going for the IL 2.

Any information on B RAF vs Interleuken 2 therapy would be greatly appreciated. I have done searches on the internet, but I would love to hear some personal stories on both therapies, pros and cons. This is a huge decision for her and i want her to have as much information as possible.

 

My next question is how are you all keeping yourself healthy. I have looked up all foods that have antioxidants and try to incorporate them in each meal. She is taking 1000 micrograms of vitamin D and is taking a multivitamin. Other than that I am trying to keep her on a balanced diet. I want her to conserve as much energy as possible, but excercise as tolerated.

 

Thank you so much in advance for any information!

Tricia

Hello,

 I haven't done BRAF but hear side effects aren't as bad as IL-2. I did IL-2  2 different ways...1) it was part of my BioChemo cocktail,.... 2) I did 3 rounds of just IL-2. They let you do IL-2 as long as your responding, so she probably will do 3 rounds and go from there. Side effects.. throwing up, chills/shakes fever, etc... If I remember correctly Janefromaine has a tip sheet that is spot on....you can find her in the search engire above.

As far a food and stuff. I try to eat right, a couple of things have to be organic just cuz a certain checmical company has distroyed the product so it's for sure organic...milk & sugar, ...never corn (it doesnt exist) Supplement...Turmeric, COq10 but I am not a freak about any of it. I am waiting for Kombusha to come back in stores at the end of the month. I try to be good and will try to just eat normal....BUT.... Don't ask me about last month when I was on steroids. I was out of control eating, never in my lifetine did I spend so much money on food in one month....geez...thank goodness doc cut me off last wk so now I 'm just dealing with withdrawls....this too shall pass.  take good care, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

forgot to mention I am 53 and have been in full battle with melanoma sice 02/2010. Did BioChemo, Il-2, lung surgery, brain surgery, 3 saps of radiation.......If your mom is in otherwise good health she can get through any of this. One of the hardest parts of this fight is trying to make up your mind on treatments...I am  doing the same thing. My doc gave me the chocie of BRAF or Ipi, I just told him today Ipi. I'll  leave the list of reasons why for another post, I have no idea which one I 'd go with BRAF vs IL-2 is a tough one, when your a responder to either one your a winner....so...geez....I dunno, either one is going to be the right one, they are both good.. She can do it   love, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

correction: that should read...been in full battle since 02/2009...geez...must be nap time...love ya

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

I did IL-2.  I did not have a choice of a clinical trial in my area, but if I had your mom's choice to make, here's what I'd consider:  IL-2 is known to produce long-term, durable responses in a few people.  With BRAF, we don't know as much; I remember reading one article where people had dramatic responses, but they were not durable.  Furthermore, because it's a trial she could end up with the dacarbazine.  Someone correct me if I'm wrong, but although people do respond to dacarbazine, it's not usually durable. 

You do need to be relatively strong and healthy to take the IL-2.  If I was the one who had to choose, I'd try the IL-2.  It's rough stuff; you can read the archives to hear all about it, but man, if it works, it is totally worth it.

Good luck to you and your mom,

KatyWI

Just keep going!

Hello Tricia, Choosing any treatment is very difficult you want to make the right choice because who knows if it doesn't work that you'll have the opportunity to make that decision again. My husband Brad participated in both the IL-2 treatment and also the phase 2 B-raf. I am not too familiar with the decarbazine that they are testing in the phase 3 trial for the B Raf.

To start with the IL-2. I don't know how much they have told you. Brad was hospitalized for both cycles that he did. He went for cycle 1(5 days) was off for a little over a week and went back for cycle 2 (5 days) and then was scanned a few weeks later. IL-2 is defiantly a rough treatment. It will make you very sick, there was vomiting involved. High fevers, blood pressure dropping and heart rate racing.  I don't remember the exact term for it but you retain water. My husband gained 30-40 lbs in water weight in a week. They do give you diuretic  to help get rid of the water weight. This was very hard for him to deal with. The week that you do have off you are spending most of that recovering from the previous week. Though you are no longer receviing the treatment the side effects do linger. He was on medicine to help control his blood pressure from falling too low. I now I am forgetting some things but my mind is not working as great lately.

In regards to the B-raf that was more recent this was his last treatment he participated in. We had heard that this was the miracle drug in the melanoma world. He started the day before thanksgiving last year. Prior to him starting we really didn't know how much longer he would have had. He was declining in a hurry didn't know if he would make it to our daughters first christmas that next month. He felt this was definantly the easiest treatment that he did. There were several days where he felt like popping 8 pills/day  was not doing enough to fight the cancer. Within a week-week in half of starting, he was feeling better. He had more energy, was seeing a decrease in the only visiable tumor he had. Was able to decrease his pain meds. He scanned Jan 4 of this year. Our prayers had been answered he had a 70% decline (which was the largest they had seen in his treatment center still to date) in tumors (He had several tumors in his intestines, trapazoid muscle [the visiable one], Lymph nodes, lungs). He had been off work for a while now and was thinking of returning back. He went from 380 mg of oxycontin 2x a day at the begining of treatment to 80 mg 2x a day this was by mid January. The only side effects that he had was really only fatigue. I have heard some get real sick to their stomach. You can also develope squamacell carcenoma. We did have a little scare with this, but the Dermatologist didn't think it was that (You do see a dermatologist every few months for the risk of developing it). My husband started to have stomach pain again at the begining of feburary. He scanned Feb 12 and we found out his tumor in his intestine had grown 20%. He wanted to stay on treatment and the doctor allowed him too. Over 20% progression disqualifies your from the trial. He was eventually admitted to the hospital on march 4 where we found out that same tumor had grown another 4 cm. They immediatly took him of treatment and scheduled him for another small bowel resection. When the surgeon went in to remove the tumor he noticed it was just a tumor shell have dead half alive. The shell was a balloon full of blood the size of a volleyball. (which melanoma tumors are known to bleed because most attach themselves to vascular areas). Once they removed the tumor shell they removed the blood from it it was now the size of a golf ball. Brad's case had to be reviewed by the clinical trial doctors. With the results from the pathology report it was inconclusive weither the treatment had worked or not. They felt though that it had done its job enough and allowed him back on the trial because of the results previous seen with him. Brad was off the b-raf for 18 days. In those 18 days several new tumors popped up now in his armpit, juggular lymph node and brain. Which we found out that patients who were taken off due to the drug not working. Tumors blew up all over the place. We never did see the results that we saw the first time WE feel because the cancer had figured out the drug. For a  few weeks it  held most of the tumors at bay all execpt for the one in his arm pit. That one was growing but slowly at first. By the end of april brad was declining quickly. We begged the doctors to keep him on drug in fear that if he was taken off he would decline that much quicker. We have a daughter that he tried so hard to be around as long as possible. He didn't care the quaility at that point he just wanted to be with her. He was taken off the drug again on May 9th when we checked him into hospice. He passed away on May 20th. I tell you his experience with the b-raf becuase I truly feel that had he not been taken off in march he would still be here and would have been on a good road to "remission". Yes the b-raf was not the miracle drug that we had prayed for in curing the melanoma. But it was a miracle for another prayer, that brad would have made it to our daughter's 1st birthday and in that the b-raf did buy him enough time to do so.

Your mom has a very tough decision and truthfully I don't know which one to tell you to go with or not. You have to do what you are doing researching all over and asking for advise and from your research you then have to decide. It is not easy thing to do. I wish you and your mom the best of luck, you both will be in my prayers. Let me know what you decide to do. Hope this helps

Hello

I have not been able to stop thinking about you since I read your reply. First of all, I am so sorry for your loss, your husband sounds like he was a quite a fighter.

I felt like I was hit in the stomach when I read that you had a one year old daughter. I can't imagine how painful it must be to lose your husband at such a young age. I have two children and my daughter was actually born on May 9 of this year.  We found out my mom had tumors on her chest x ray 8 days after her birth and just recently found out it was malignant melanoma. I didn't realize that this disease affects so many young people. Your reply has reminded me of how important my family is and to not take anything for granted.

My Mom had decided to go with Interleuken 2, she feels it will give her the best chance of survival at this point. I am supporting her decision 100% and will pray that it works for her. She is in extremely good health right now and we plan on spending a lot of time with my kids before she starts the therapy. I told her about your reply and how the BRAF worked for your husband. We are both really worried at this point that she may end up randomized to the decarbazine. I am hoping BRAF will be available to her if the IL 2 should not be effective (fingers crossed it will work).

I want you to know that you and your daughter are in my thoughts and prayers as well. I hope your daughter will get you through this difficult time (thank God for our children!). My mom was a single parent and is my best friend. I consider myself extremely lucky to have had such a wonderful, strong women as my role model.

THanks again for your reply

Tricia

Tricia,

 Your whole family are in my thoughts and prayers. This is not an easy time for any of you. It is so hard to see your loved ones go through some thing like this.

When does your mom start IL-2? It is important as a patient that you follow your gut instinct especially when choosing which treatment to participate in. I hope and pray that your mom is part of that percentage of which IL-2 works for.

Thank you Tricia for the thoughts and prayers. It is what is helping my family cope with my husband's passing. I thank God everyday for my little angel. I cannot even imagine what it would be like going through this without her. She is my sole motivation to get out of bed each morning. As you know the presenace of a child brings so much love and joy. She definalty was our light in a dark cancer room. I am sure your children are that for your whole family. Please keep me updated on your mom's progress.

Take Care

Laura

Hi Tricia

I can't offer any suggestions on either of the drugs since I have not taken them. I'm currently deciding between phase II trial called daniciclib or compassionate ipilimumab. I am currently taking dietary supplements ...they are very good but when on a clinical trial please be careful which ones you would be taking.  For instance, if I start ipilimumab, this is what I need to do with the supplements.

Apple Boost - I can continue to take.

Vitamin D3 - I can continue to take

CoQ10: should stop (interaction that could stop effectiveness)

Cod LIver Oil: should stop (risk to have bleeding due to lowering platelets)

Probiotic 15-35: NO
 
Tumeric Extract with bioperine: NO
 
*Always check with your doctors when starting trials.
 
In the meantime, while I am not on any drugs I take all of the above.
 
 
Your mother I am sure greatly appreciates all that you do for her.  Val Stage IV

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