Decided to try Interferon for our 14 year old son

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11/26/2010 8:03am
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Replies: 37

We had another visit to Dana-Farber on Tuesday. It was supposed to be an easy follow-up on our 14 year old son's two SNB surgical sites ..... never assume anything will be easy!  Josiah's body is trying to reject the dissolvable stitches and he had signs of a slight infection in both spots. So the surgeon cleaned, poked, prodded and packed the wounds with gauze - no pain meds or anything. Josiah was stoic as the blood ran, literally. What we had hoped might be a nice family day in Boston afterwards was not to be (we had brought his two younger sisters (ages 8 and 12) with us this time - a first to the hospital). Josiah was SO upset/mad/devastated after the appt. and he cried and raged inside the car. SO hard to witness and the girls were upset too. We finally got everyone calmed down enough to go out to dinner. Soon the kids were all laughing, but my husband and I felt like we had been run over by a mac truck - once again. I felt such pain in my heart for my son, as well as my daughters, who now have a very different life too.

The Oncologists and surgeons are strongly suggesting that we have Josiah try Interferon. I have been the hesitant one ... knowing the limited success and the possible side effects. But Josiah is adamant about trying it. I am fearful that if I put my foot down and tell him "no", he would blame me subconsciously if the cancer comes back. My husband also thinks he should do it. So that is the plan ....

We are able to do the treatments in Maine where we live and I have set up the start date of December 13th so that 2.5 weeks of the first treatment month will fall during his school break. I am looking forward to some time off from driving to our stressful visits in Boston .... 7 trips in 7 weeks, two surgeries, one devastating diagnosis, hours of scans - enough! Hopefully we can take December off from going there and can enjoy some of the holiday season here in Maine, especially the few weeks before he starts treatment. 

Please hold Josiah in your prayers .... children shouldn't have to fight cancer, but no one said life was fair.

stage IIc

NED - 8 days and counting .....

Hi there,

It's a path forward, and that's something to be thankful for.  And let's have three cheers for "8 days NED."

You might want to start collecting "interferon tips."  Here's a few from me...I did INF eight years ago.

Josiah should drink lots of water; this seemed to help with the side effects for me.  If he throws up after the first IV, ask for antinausea medications at the next appointment - don't wait and see if it gets better!  In general, the first month is a routine of work (or school in his case) - infusion - Tylenol - bed.  I had a one to two hour window before the infusion hit me where I could get home and possibly eat a little before I needed to go to bed.  I had an outrageous headache the third day where the doctor ended up calling in Tylenol 3 for me, but it was never that bad again.  So some of the worst side effects may happen right away, and then as his body gets used to the medication they may lessen.  So don't let him be discouraged if the first couple days are worse than he bargained for.

The injections are not as difficult.

Over time on the injections, he may start to experience some other side effects.  One I had was dry, itchy skin.  If this starts to happen, find him some moisturizer that he's willing to use - unscented and as manly as possible, LOL!  Tell him not to worry if his hair starts to thin; he won't go bald, no one will be able to tell, and it will grow right back when the INF is over.

Then, at the end of the 12 months, I highly recommend that he throw himself a party - I put a party hat on the sharps disposal container and went out for pie!  It's rumored that young people do better on this drug - so I think he'll manage just fine.

Good luck, and happy thanksgiving,

KatyWI

Just keep going!

Yep we had a party for Ben when he finished!

I agree with Katy..lots of water. Try to get the infusions in the afternoon so he can sleep during the worst of it. Ben would come home, eat somethig before it "hit"..he was already thin so losing weight was a concern. Headaches were the biggest problem for him at first and he took vicodin if they got too bad.

He is young and strong and will probably do just fine!

Thank you for the advice! Keep it coming!

Josiah is a strong boy .... he recovered so quickly from his first  4-hour surgery (4 different incision locations) that it was shocking. He seems to have a very high pain tolerance so hopefully that will help with the Interferon, although it isn't pain-inducing, necessarily. When we spoke with his physicians this past week, they said that they believe he must have an incredibly strong immune system. His main lesion was SO large - 14mm - that the fact that it didn't invade his nodes seems miraculous (my words, not theirs) and that his body is definitely fighting against the melanoma invasion.  We'll take it! :)

I forgot to ask .... do they still do the PET/CT/MRI scans during the Interferon year? It seems like I read somewhere that they don't ....

Ben had a Pet/Ct scan 6 months into treatment, don't know if thats the norm.

Anonymous - (11/26/2010 - 4:36pm)

hi,

 

It is sounfair for meltostrike such a young boy. My heart goes out to you.

I guess that I question why the docts did not give him more options for treament then interferon. As you stated, low probabilty of effectiveness.

Have you looked at other treatments??

 

God bless your family.

He has no nodal involvement nor metastasis so from what I understand, this is our only option other than "wait".

Melanoma Mom -- Sounds like things are going pretty well actually, despite the nasty hospital visit. A couple of things I' ve picked up in my years around here. Young people seem to tolerate interferon better than adults. This could be a factor in his favor. Also, did anyone mention the possibility of just doing the first month of high dose and stopping at that? There is some thought that this confers most, or all, of the benefit and a few studies seemed to corrobarate that. Just so you are aware that this could be an option.

It's great he is NED!

Good luck.

Don, 

I have heard mention of this thought on the boards, but have not heard it from the Oncologists. Are there any articles that you know of that I could reference? 

It was a Greek study, here is the link http://cancerology.blogspot.com/2009/01/one-month-of-high-dose-interferon-is_25.html

I also found a thread on this forum that discussed the issue, let me try to link that

http://www.melanoma.org/community/mrf-bulletin-board/interferon-30-days-iv-vs-30-days-iv-11-months-injections-0

So, some docs question the study. But then some docs question the effectiveness of interferon at all, so I've always felt the one month was a reasonable option. I just wanted to make you aware of it, not really advocating for it.

Hi 

Good luck with the IFN. Our son was 18 when he did his IFN. The 1st month is the toughest and like Becky said take it late in the day. We were told eat Bananas as it helped with the toxins in the Liver. If he reacts then they have provision to adjust the dose. Lots of fluid and stuff like Gatorade. Yes it was tolerable. Make sure they at least do CT scans our Onc said only once a year was enough and guess what we were late in finding nodes in his abdomen so insist on regular scans. Tell Joshiah we are all thinking of him.

best wishes

James

You are in a very difficult position.  It is so hard to be the mom.  I hope his treatments will go well, and am glad he is taking charge and making the decisions.  It is not easy, but I will pray it works wonderfully.  Good luck to you and your entire family.  You are right, children shouldn't have to fight cancer or any terrible disease.     Beth 3/B 

Melanoma tends to cut into your looks!!

 

hi,

I totally agree that a parent should never have to see their child suffer with any illness, I am sorry your son and your family are going thru this. 

There are a lot of us who can help with tips while he does the intereron.  The first couple of days are the toughest usually, definitely anti-nausea medicine is good to have.  I found that I needed to drink gatorade alot to keep hydrated, and plenty of tylenol for headaches.  They also suggest that you schedule infusion later in the day so you can sleep off most of the effects. 

Please know that you and your son are in my prayers.  He has youth strength and determination on his side.

take care, laurie from maine

I can't imagne the anguish this misearable disease has set upon your family. You are right no child should ever have to  endure this.  Deciding on treatment brings more anguish, and you will never know if the path you decide on is the right one. Katy has (below),  given you good solid support,. and please make sure you come here anytime you have a question or feel down, there are many many success stories, and hopefully these days will soon be a behind you and just a bad memories will remain..you have come to the right place for love suport and good solid advice..take care, and hang in there, you are in everyone thoughts...Joan

I am 8 months NED...Stage 4 Melanoma.

Melanoma Mom...you are right never assume nothing is easy...He is stage IIc...there really is no treatment right now with a promise of no return....

You do everything possible and pray for the best outcomes...

I know it's hard coping with a teen with cancer...my son Shaun was diganosed just before his 14th birthday with Desmoplastic Small Round Cell Sarcoma...they told us then there was no hope...but we had to try regardless...

Shaun passed away at 16 in 1998. They didn't have a promising treatment for his kind of cancerand are still what seems as light years away for a cure...but melanoma treatment is waking up and now we have many more options then we had 5 years ago...

They told me at Mayo in Minnesota in June 2009 I had 6 to 9 months....now I am NED and participating in a  vaccine trial at Moffitt...:) One more round to go and I will have finished the first cycle of 12 weeks....hopefully one more 12 week cycle then boosters to keep if from coming back. I love Dr Jeff Weber!!

-Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Thank you to everyone for your support and guidance! As a 14 year cancer survivor myself (stage 4 thyroid), I have seen great strides in the treatment and innovations that have come around for that particular cancer since I was first diagnosed in 1994. So I will pray and believe that there are tireless physicians and scientists out there, working hard on Melanoma. 

As crazy as it may sound, we are going to beat this. I believe that it is a true miracle that his nodes were not involved and we plan to ride that miracle onward! I am now dedicating myself to learning everything I can about this dreaded illness.

Josiah mentioned the other day that if he gets a Make A Wish, he might choose to meet the President. Just think if that happened .... we could really try to spread the word in DC!

Anonymous - (11/28/2010 - 1:02pm)

Lynn,

 

Glad to see your post...wishing you continued NED status.

 

Please tell us the vaccine trial you are in. If you have the "NCT" clinical trial number that would be great or maybe just the clinical trial.giv link.

 

Thanks so much

Mary

Hi there,

I'm Stage IIIb and will be starting interferon tomorrow.  I'm incredibly nervous!!  I'm 33 and feel too young to have to deal with cancer so I really feel for your son to have to be dealing with it at such a young age.  Thanks for posting your question because now I have some tips on how to get through it too.  Right now my plan is just to do the high-dose for a month - I prefer to focus on a short term goal - I will decide whether or not to continue once I reach the end of the month.  I will be thinking of your son and I hope it goes well for both of us!!

-Monica

Monica, please be sure to keep us posted on your month. We are all pulling for you! Do you have lots of Tylenol and Gateraide on hand? 

Thinking of you tomorrow!! 

Hi again,

I just thought I'd let you know I had my first dose last night.  It wasn't the best I've ever felt but it certainly wasn't as bad as I thought it was going to be either.  They gave me anti-nausea meds and Tylenol before and I felt a bit of joint soreness/achiness but that was it at first.  I let my Tylenol wear off a bit too much before asking for more so I got very shaky/shivers and was cold but they gave me more Tylenol and a quilt and after the Tylenol kicked in and I got warm, I was ok.  I slept pretty good and when I woke up I only had a very tiny minor headache.  I'm in Canada - it's probably different here - I am admitted to hospital for the first week and I had to stay there last night in case of allergic reaction or anything but now I can come and go as I want.  I have to be there for my dose, of course, but if I want to come home and sleep in my own bed tonight I can or I can stay in hospital.  It's nice to have that option.  I've come home for the afternoon but will go back later and decide after my dose what I'm going to do for the night.  Again, I'll be thinking of your son and hoping for him (and me) that it's not as bad as we're expecting!!  I keep telling myself it's a month... 1 dose down... 19 more to go... it sounds not so bad when I say it like that.  I think I'm only going to do the high-dose month but will make my final decision as I get closer to the end of this month. 

Take Care,
Monica

Hang in there, Monica! Keep us updated. Are you on facebook? My Mom is from Lunenburg, Nova Scotia, and we visit there every summer.

Yes, I am.  There's a few Monica Doiron's but my pic is me at Peggy's Cove.

Good Luck,

Just remember  if it get s to bad or  hard for him ,you can always stop.

The first month is the most important,hopefully he  will sail through it.

Try to take it day by day,consult with the Drs. if need be,check in here,

let us know how he's doing..

  StanN  Interferon Dec 13. 2001 - Aug 13 2002

 NED  since Oct 24 2001

Hi,

You seem to be going through much of what my husband has gone through.  He had 2 SNBs and one of them got infected.  I had to pack his wound for a couple weeks, not really too big of a deal after the first couple times ( he is now healed nicely) and he is starting interferon today YIKES!  I am glad he is starting it, and scared too, not knowing how he will handle it.  I have a 14 yr old son too and can't imagine him having to go through what my husband is going through.  The infection pushed back his start date for interferon so he should be finished with the HD on Christmas Eve, not really what we wanted to do during the holiday season.  I'm sure your son was just super frustrated with his incision not healing nicely and things not going as planned.  As a teenager I think he has it in his mind exactly how things should be, and when they don't happen that way there is a lot of disappointment.   Hopefully his young age and good health will help with the interferon.  Good luck and best wishes for your son and your family.

Akilyn

Akilyn, the photo of you and your son is so cute! I hope things are going well today with your husband. Keep us all posted!

I was diagnosed on my 39th birthday, and I tried interferon.  Unfortunately, I only made 8 weeks before I had to stop due to almost every side-effect.  The one that got me was depression, though.  You might want to talk to Josiah's doc and see if that's something to address BEFORE he starts interferon.  I think if I had been on the meds before I started, I may have made it longer.  I've seen kids here do GREAT on interferon--unlike the oldies like me who couldn't tolerate it.   At 14, though.. I'm not sure they've studied a lot about antidepressants in teens.  Ask the doc. 

As many have already said, he needs to drink LOTS of water, pre-treat with Tylenol and take it 2-3 times a day.  I was so sick I only wanted to lie in bed all day.  Eating wasn't a problem for me (as long as it was something I wanted---poor hubby would go get me something, I'd smell it and go.. "uh, no.  Go get me something else."   He doesn't cook, so I kept him running!  Drinking WAS a problem--even a sip of water (which i needed BAD) was like putting a cotton ball in my mouth.  I'm a coke-a-holic, and even it tasted awful, so water was about all I could drink.  And I had to MAKE myself drink that.

I don't know what kind of insurance you have.  Fortunately, mine was GREAT, because if I'd have had to GO in for treatments, I'd never even have made the 8 weeks.  My insurance paid for me to get a picc line, then have a nursing service come to my home every-day during the high-dose month.  They'd hook me up to the IV and be gone within 30 minutes.  They provided the meds and took bloodwork every week.   They had a 24-hour phone to a nurse (which I called a lot!).   It's something to check into.   (I DID have to go in the 1st time, to make sure there weren't any problems, but after that, the nurses came Mon-Fri.)  Then the nurses taught my hubby how to do the shots 3 times a week.  I'm a wuss.. could never poke myself!  The service STILL provided the interferon via the mail every 2 weeks (in dry ice, so as not to ruin the meds).  I used the "pen"... MUCH easier than mixing up the meds and dealing wtih syringes/needles.  It was all already in the pen.

Dec. 8th will be my 10-yr NED date, so I'm going to 'assume" the 8 weeks did something!  At least I got that first high-dose month in, which as Don says, many studies are showing is just as effective as the entire year.  When they did the wide excision on Dec. 8th, they DID find melanoma in-situ (which is the purpose of the wide-excision--to get the margins).

I wish Josiah (and you, mom!) the best and will be keeping you both in my heart and prayers.  Please keep us updated!!

I'm excited he's geting a "Make-a-Wish"... that's awesome!!

*hugz*

~Lisa~ (lisanorvell@hotmail.com

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

Thank you, Lisa, for your wonderful suggestions. I am definitely looking into antidepressants for him. Depression runs in our family so I want to be sure to get ahead of it. So far, our insurance has been amazing. We won't have a visiting nurse, as we are choosing to use an Oncologist that we already have a relationship with, but the meds being mailed to you when it is low-dose sounds great (busy Mom of three!) so I will look into that as well. Thanks!

Dear MelanomaMom.....reading your posts really breaks my heart. This disease is bad enough as it is but for a child to deal with it is even worse. It's not fair!  I lost my wife when she was 37 yrs old and she tried Interferon but the mm returned just one month in. I don't think it would have made a difference in her case but since Josiah is young and has no signs of mm at this point...it may be well worth it. Especially since he is all for it. Interferon is in my opinion a pathetic excuse for treatment but I guess with all the years of research this is all they can come up with. You and your family will be in my thoughts. Good luck to you and your son!

Mario

If you choose Interferon, PLEASE heed the advice of the people telling you to look into getting your son on an anti depressant BEFORE he starts.

The depression can be so severe that people have had thoughts of suicide.

I would do Interferon all over again if I had to, but I would have asked for anti depressants first.

You are being an amazing pillar of strength and support for you son.

I have put a lot - and I mean A LOT - of thought into the anti-depression meds ..... I take this side effect very seriously and I appreciate you pointing this out.

After talking to his Oncologist, Pediatrician and a medical counselor that I have seen for 4 years, they are all suggesting *not* to start him on anti-depressants. 

When we meet with the medical team this week in anticipation for the start next week, I am going to have them thoroughly go over the signs of depression with him. 

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