Alyssa

Is there light at the end of the tunnel?

 

Hi all!

My name is Alyssa and I'm a 29 year old female, battling for the 6th time with melanoma. I was first diagnosed at the young age of 23 with stage 2b. I had, what I thought, was an ingrown hair on the outer side of my knee on my left leg. I work in the healthcare field, so I asked a few nurses what they thought. They told me it was an infected hair follicle and in order for it to go away, I needed to find the hair and pluck it out. I would pick at this darn thing quite often until I just gave up. I noticed it turning a dark brown color and just puffed up over night. 

Finally, I went to my dermatologist and after removing the ingrown hair, my results came back that I had stage 2b melanoma and the ingrown hair was in fact a mole. I went to Karmanos Cancer Center in Detroit where I had surgery on my left leg as well as 2 lymph nodes removed in my groin. 

Fast forward four years later when I noticed a blue cyst on my thigh. I went right away and again, my results came back positive for melanoma. This time I was diagnosed with stage 3c. I have been going to the Univeristy of Michigan Cancer Center ever since. I had an additional three other reoccurrences and surgeries with 13 lymph nodes removed in my groin. My last surgery was the Isolated Limb Perfusion...talk about a rough recovery.

Three weeks after the isolated limb perfusion, more tumors appeared on my thigh. My Oncologist scheduled me for a brain MRI and more CT scans and the good news is that the scans back back negative. The bad news is that he calls my cancer "microscopic". He fears since my reoccurrence rate is so high, the cancer may have already spread to my local organs. I am now starting treatment with the combo drug of Yervoy and Opdivo. To say that I'm scared for this next treatment is an understatement. 

I would love to connect with others who may have been through this treatment or know someone who has! Best wishes to all battling! I'd love to connect if you need support during your fight. 

Mon, 2016-02-15

Comments

JenniferH - (2/26/2016 - 1:02pm)

Hi Alyssa,

I apologize if this message comes across 3 times...I'm having some computer troubles and can't tell if it got sent or not.  :)

I just completed my second does of treatment-same treatment you are doing.   So far I have minimal side effects.   It may be starting to affect my tyroid function, but they are just monitoring it for now.   How are you doing with treatment so far?   I hope you are doing well! 

 

LHiner50 - (2/28/2016 - 9:16pm)

Hi Alyssa

I began the same two drugs in September in a clinical trial at Johns Hopkins in Baltimore.  I had no side effects until the labs came back indicating the thyroid levels were off.   I had no symptoms and started synthroid.  In late November I began having "belly pain" off and on.  By January it was increasing.  Labs showed the pancreas levels were super high.  Started prednisone and right away the pain stopped.  Treatment was stopped in January due to the pancreas issue.  The treatment stays in your system for months.   I am being tapered off the prednisone now that the levels are returning to normal.  My first scan after starting the treatment showed little change.  The scan just done this month showed "almost complete resolution" - so it's working.  Will have another scan  end of April to see how things are.   Everyone is different in their reactions to the treatment.  I have felt fine throughout the four months except for the "belly pain". 

I was on Interferon for a year in 2014 after haviang several lymph glands from the groin removed (7 of 12 were positive) but tumors showed up in the lymph glands in the retroperitoneum.  That's when I was referred to Hopkins. 

Originally, I was diagnosed in 2003 and had a wide excision on the inner thigh.  That was it for ten years then it decided to rear it's ugly head again. 

Labs and you knowing your own body are your defense in knowing when the drugs are "overstimulating" other organs.  Best of luck to you in your journey.

Linda

 

 

 

JenniferH - (3/18/2016 - 2:47pm)

Hi Linda-

So how many ipi/nivo treatments did you complete?    I had very minimal side effects from my first round, fevers and nausea for a week after my second round and elevated liver numbers.     I haven't been able to do my 3rd round because of the liver and I may have to stop treatment.    

LHiner50 - (4/1/2016 - 7:43pm)

<p>Hi Jennifer</p>
<p>I had the four ipi/nivo treatments and four nivo treatments before stopping due to the pancreas problem.</p>
<p>I&#39;m on a break now.&nbsp; Future treatment will depend on the scan results done this month.&nbsp; Having problems tapering the prednisone.&nbsp; Pancreas levels increase when dosage is lowered.&nbsp; Hopefully you can begin treatment again.</p>
<p>Linda</p>

JenniferH - (4/5/2016 - 1:30pm)

Hi Linda,

My liver improved on its own with a 2 week treatment delay.    I just did my third ipi/nivo combo treatment.   One more biggie to go and then Ill be on the nivo course.   Best of luck tapering the prednisone!   Hope your scan results show great results!!  

jjw2014 - (4/18/2016 - 5:47pm)

Hi Jennifer 

my sister is fighting stage IV melanoma.  She is about to start her yervoy Opdivo treatment and i wanted to find out what you experienced your first time.  How soon did any side effects happen?  She's worried about all the side effects especially diarhea and getting on a plane.  Thoughts?  Any advice/info would be so incredibly helpful.  

 

Kind REgards,

Jennifer (Marsha's sister)

JenniferH - (4/18/2016 - 7:12pm)

I had minimal side effects my first round, a week of fevers/nausea after my second round,  minimal side effects after my third, and I'll have my 4th round next week.   Any side effects started around 3-5 days after treatment...no diarhea or stomach problems, no rashes.    I've been pretty lucky as far as side effects go!    I've been able to keep up with my "regular" life schedule.  :)

 

thank you so much for the quick response.  i'm happy that you didn't have major side effects and that you've made it to the 4th round.  GO Jennifer.  My sister lost her husband to melanoma 2 years ago and at the same time her melanoma went from stage one to stave IV.  She has 2 young children and just doing her best to live everyday without this monster of a disease completely consuming her.  

 

Hope you have a beautiful day!

Best,

Jennifer

JenniferH - (4/19/2016 - 10:02pm)

So sorry to hear your sister's sad story!  I hope this treatment works for her.  I went from stage 1 to stage 3 within a few months, it still seems like it can't be happening to me!    But I am lucky for this treatment and lucky to be doing as well as I am with the side effects.   I hope your sister has the same experience.   I was worried most about not being able to take care of my 3 year old while my husband was at work, but with the exception of my one rough week, life is as usual.    It makes it a little easier to "forget" about the melanoma beast for awhile.   :)  Best wishes to you and your family!!

LHiner50 - (4/30/2016 - 9:20pm)

Hi Jennifer

Just had CT scan and there is no sign of tumors now.  The nivo is still working.  Immunotherapy is going to be the great healer.  Good luck to you and continuing treatment.

Linda

That is wonderful Linda!!!    I have my 12 week scans next week.    I'm so nervous.   
Will you just continue with scans for monitoring, or will you eventually start treatment again?   Horaay of ipi and nivo :)  

LHiner50 - (5/10/2016 - 3:36pm)

Hi Jennifer

Will continue scans every three months only unless a change is seen.   I may not be able to go back on nivo but hopefully by then another option will be available if needed.  How did your scan go.  It took five months to see a change in the scans.

JenniferH - (5/12/2016 - 7:48pm)

I hope you don't have to do any further treatment!    My scan results were good!   My 5 cm tumor is down to 1cm and my 3 cm tumor is down to 2.5, but they are thinking it is really just inflammation and dead tissue.  So it's Nivo every 2 weeks for me for 4 treatments, then a follow up scan.   If all goes well with that, I'll continue with the every 2 week treatment and scans every 12 weeks.  Right now all of my disease is contained in my neck.    Hope it doesn't pop up anywhere else along the way.  

LHiner50 - (6/10/2016 - 3:07pm)

Hi Jennifer

Haven't been on in a while - have a new dog keeping us busy - very active.  So glad to hear your positive results.  Keep up the good work.  Will let you know results of next scan in late July.  No side effects?  Lucky you if not.  Take care

JenniferH - (6/10/2016 - 9:41pm)

Keeping busy is key I think  :)   I have a bit of fatigue the day after Nivo, but other than that I'm doing fine!   My next scans will be at the end of June.