Feeling Discouraged/scared

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11/26/2010 1:29pm
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Replies: 22

Hi everyone,

I am quitting work so do the IPI trial and for my leg wound(s) to recover (yes one more incision has opened up after the stitches were removed and it is the siza of a dime, the other hole is a tad bigger than a quarter...unhealed wider excisions). BUT, in checking y leg which I do everyday, I have found THREE more melanoma tumors, in addition to the three that I discovered a month ago. This is the ones I can see. I am scared about what I cant see. I am just plain scared, and discouraged. YES I am starting IPI this week (Wednesday), so I will have 6 tumors to mark the effects of the drug. Just wanted to vent to people I know who will understand.

Vermont_Donna

stage 3a

Diagnosed 9/06

SNB October '06

LND December '06

11 months low dose Interferon (after failing high dose due to infected PICC line) 2007

7 months Leukine 2008

Isolated Limb perfusion September 2009

5.5 weeks radiation to part of my leg March '09 to April '09

6 weeks radiation to another part of my leg July  '10 to August  '10

lots of wider excisions for melanoma and suspected melanoma

lymphadema big time and lots of treatment and wear compression garment daily and night-time garment nightly

KatyWI - (11/26/2010 - 2:13pm)

Oh Donna, we hear ya.  I hope the extra rest will get those incisions to finally turn around.  Hang in there, good luck on Ipi.  I started Monday, myself.

Hugs,

KatyWI

Just keep going!

Hi Katy,

Thanks! Can you please tell me all about your Ipi experience!! It will help me go through my first! Thanks,

Vermont_Donna

jag - (11/26/2010 - 2:52pm)

Good Luck with Ipi!

Will keep you in my prayers

John

Insert Generic Inspirational Motto Here

Anonymous - (11/26/2010 - 3:15pm)

Hi,

I can relate..I just found 2 more tumors on my leg. I am considering doing PLX 4032 to shrink/get rid of tumors in my leg. HOPEFULLY, the drug will work.

Just out o fcuriosity, did you consider PLX 4032 & why did you pick IPI.

Take care & thanks foryour reply

Hi,

 I dont know anything about PLX 4032.....my doctor offered me the IPI trial......it is offered at the medical center/cotton treatment center where I go. I will ask my doctor about the PLX 4032. Thanks!

Vermont_Donna

Ps Good luck!

Hi,

  I am also BRAF negative. Does that matter?

Vermont_Donna

glewis923 - (11/26/2010 - 7:43pm)

Hey Donna-  yep,being Braf negative means you are not very likely to respond to PLX-4032 drug....so... your Dr. sounds like he/she may be steering you in right direction with Ipi drug.  Wishing the best foy you and ALL!

 

Love, Grady & Family.

 

 

 

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Fen - (11/26/2010 - 6:02pm)

It's easy to get discouraged, Donna.  I have no words of inspiration for you, but will keep you in my prayers.

Fen

Donna

I can't say I know how discouraged you feel from the patient standpoint but I do know from the caregiver's side.  This disease can/will take everything away from you if you let it.  Please stay encouraged it's half the battle.  Don't let that booger (melanoma) think it can control you.  I hope Ipi is the magic bullet for you and everyone else who tries it.  Just remember all of us on this board care and want to encourage you any way we can.  Please keep us updated especially after you start Ipi. 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

King - (11/26/2010 - 9:41pm)

Donna,

 

I think it is perfectly normal for you to feel discouraged and scared.  You have been through so much and yet melanoma keeps popping up.  However, I think you are doing all that you can possibly do.  You have left work and will be starting the Ipi trial real soon.  I pray this is your magic bullet.

 

You know you can come here to vent any time.  I've been NED for over 2 years now but I must admit there are times that I still get scared.

 

Believe in your treatment choice and hang onto hope.

 

Keep us posted.

 

Stay Strong

King

Stage IV 7/05 Liver mets

BethA in VA - (11/26/2010 - 10:53pm)

Just sending hopeful thoughts and prayers for your strength to pull you thru.  It certainly is not easy, but try to stay positive and take one day at a time.  Good luck.  I care!!  Beth 3/B

Melanoma tends to cut into your looks!!

 

Thanks everyone!

Found another spot today on my thigh that was not there yesterday...little pinkish blue nodules.....they look like my previous melanomas. If thats what they are they are growing fast and popping up quick!!! Good thing IPI is this week!

I do appreciate everyones comments and the thing I hang onto the most, is peoples committment to fighting melanoma, and not giving up any hope, and trying many many treatments!!! I am glad I will be having a lot more time to devote to resting, eating right and fighting melanoma full time!!!

Tanks again,

Vermont_Donna

triciad - (11/28/2010 - 7:40am)

Donna,

I am so sorry to hear what you are going through.  I will keep you in my prayers.  YOU CAN DO THIS...YOU'RE A TOUGH COOKIE!

You're going into battle on Wednesday...you're a melanoma warrior!  To take the edge off the stress and anxiety, design your battlegear.  Yes, sounds crazy, but I think it can help.  In your mind, create your own action hero to fight the bad guys (tumors).  And remember to design the weapons, too!  During treatment...be the warrior!!!!  Draw the cartoons,etc.  "See" you being the winner...VISUALIZE the end of "Maggot Melanoma."

For some, this may sound childish...exactly.  Everyone, needs to be a kid sometimes.  Maybe all of us should try it and post our drawings.  Anything to take our mind of the beast!

Best of luck on Wednesday...and keep that fighting spirit!

Tricia

Donna, I will be thinking of you and praying for you as you begin your treatment this next week.  Please know that you are in lots of peoples thoughts and prayers.  

Many blessings to you,

Shelly

Sharyn - (11/28/2010 - 8:21pm)

Hi  Donna,

Have they ever tried applying a VAC (Vacuum Assisted Closure) dressing to your open wounds? I had a stubborn surgical wound on my leg after a massive WLE in 2007, and again in my groin after my ILP and LND, and it worked amazingly well. If they haven't tried it yet, ask about it.

Just because you're seeing a lot more new tumours on your leg, it doesn't necessarily mean that they're reproducing elsewhere. I had oodles of leg sub qs before the mel went postal on me. Hopefully the ipi will ward off any nasty cells that may be planning an attack elsewhere.

I had no side effects whatsoever from ipi... well, none worth mentioning. I just had my 4th infusion last Thurs, and now my dr is putting me  on maintenance, which is no treatment for 12 weeks, then re-scan. He said of my sub qs that I have a mixture of shrinkage and stability. We'll see what the lung and brain are doing after my first 12 week scan on Dec 8.

Anyway, don't be scared or discouraged. You still have many options left to try. Heck, I haven't been NED since May 2008, and had disease progression ever since, despite all the different treatments I tried. But as long as there are options, I'll still have fight in me. Don't give mel a depressed body or mind to simply take over. Stay positive and keep fighting!

Hugs

Sharryn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

ValinMtl - (11/29/2010 - 9:36am)

Hi Donna, I can understand how you are feeling.  Just before I went on the ipilimumab trial in September (same one as Sharyn), I was in panic mode, the tumors were out of control and I was counting new ones daily.  My healings took forever and the radiation was quite nasty.  I've now finished my 4th treatment two weeks ago and really I'm feeling quite well.  Like Sharyn, I had very few side effects, slight headache one or twice and a few digestive problems...really nothing at all...compared to inteferon, now that was tough. My tumors are drying up...do you have cutaneous or subcutaneous.  Mine are mostly cutaneous.

Donna where do you live in Vermont...if it is not too far, I could go down for a visit and we can have coffee or lunch together. I found it beneficial to meet up with Sharyn, it's always nice to talk to somebody in the same situation..we can relate.  When I was in Boston, I met up with Jerry and Christine as well as others, it's comforting to know you are not alone.  So if you are up to it can I take a drive down to see you in the next few weeks?

Val xx

Live Laugh Love
Nothing is worth more than this day!

Hi Val,

   I live in Northern Vermont....75 miles from Burlington.....23 miles from the Canadian border on Interstate 91. I do have my passport too. So we could meet in Burlington sometime...I could do some Xmas shopping! Would love to meet and chat!

Hugs,

Donna

ValinMtl - (11/29/2010 - 11:48pm)

Hi Donna,

sent you an e-mail via your contact.  Shopping in Burlington sounds good but then again..we might be closer than you think.  Val

Live Laugh Love
Nothing is worth more than this day!

MaryD - (11/30/2010 - 12:05am)

Hi Donna,

It can be so hard to stay positive when this disease keeps popping up but it sounds like you are headed in the right direction . .and many have responded positively to Ipi.

Know that we are cheering you on and hoping that the Ipi will knock out the mel!

Sending good thoughts,

Mary

Stage IV (via one lung met)

DX 2001

1 year INF

Peptide vaccine trial

Radiation

Ipi

6 mos pulsed IL-2

 

Hi Donna,

I will keep you in my thoughts and prayers as you battle melanoma. Many people have seen excellent responses to ipi, and it is my hope you will too. I'm sure that Dr. E is doing everything he can to help you. Let us know how your ipi treatments go. I had very few side effects to ipi but we all react differently. So hang in there and good luck on the program.

Best regards,

Bruce in New Hampshire

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

BarbieGirl - (11/30/2010 - 9:13am)

Donna, I'm so sorry things have progressed to this point, but I've heard really good things about the IPI.  I hope it's "the" treatment that will work for you.   I can so relate to open incisions.. they are a bitch!!

NEVER give up HOPE, my friend... there is always HOPE, and know many here are keeping you in their hearts and prayers, including me.  Please update when you get a chance.  *Hugz*

~Lisa~

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!!

Rocklove - (12/1/2010 - 9:58pm)

Donna,

I know you have been through alot over the past years we have been keeping up with each other.

I was turned down with the PD-1 trial... so the doc recommended the ipi compassionate. I took it.. but certainly in a I don't know if I did the right thing mode.

You have got knocked down a lot of times. But u have always managed to pick yourself up and dust yourself off and go back fighting. I know that is what you will do this time too.

There are a lot of us cheering and praying for you.

You go Girl!!!

Rocky (Stage IV Liver Mets)