Bad news yesterday, Stage IIIa, now what???

Dave,

I'm sorry about the roller coaster.  I was told I had bladder cancer that was early stage and found out a week later that it was melanoma. So I totally understand the ride…..

Yes, although I'm not a Doctor (you need to remember that for all advice given on the board) usually for preliminary staging they do a PET Scan.  I believe that LDH levels are not done, if they are it would be for a baseline. I am stage IV and my mel specialist does not do blood work. I think that they are done when it is in major organs only to see if that organ is having problems – ex. liver.  Each cancer center has a different protocal.

Congratulations on the up and coming baby. We have another member on the board that happened to also. His name is Mark and he lives in Canada – I haven't seen him post lately but last I heard his baby had been born and he was doing well.    It does complicate your life though, think of it as a blessing to help you through this.

I went straight from stage 1A to IV so I really don't have advice on treatments, just wanted to let you know that you aren't alone out there.  If your PET is clear then you will be NED. That brings up issues with treatments (although it's a great place to be!!). Interfuron will be offered. Trials that will be offered will probably have a placebo arm.  You need to think carefully about that.  Have them test your hla to see if you are eligible the vacine trials. You also might be offered radiation.

Gather your mental strength and wait for the results of the PET before any decisions are made, they also might not discuss options until the other nodes are taken.

Linda

Dave,

I'm sorry about the roller coaster.  I was told I had bladder cancer that was early stage and found out a week later that it was melanoma. So I totally understand the ride…..

Yes, although I'm not a Doctor (you need to remember that for all advice given on the board) usually for preliminary staging they do a PET Scan.  I believe that LDH levels are not done, if they are it would be for a baseline. I am stage IV and my mel specialist does not do blood work. I think that they are done when it is in major organs only to see if that organ is having problems – ex. liver.  Each cancer center has a different protocal.

Congratulations on the up and coming baby. We have another member on the board that happened to also. His name is Mark and he lives in Canada – I haven't seen him post lately but last I heard his baby had been born and he was doing well.    It does complicate your life though, think of it as a blessing to help you through this.

I went straight from stage 1A to IV so I really don't have advice on treatments, just wanted to let you know that you aren't alone out there.  If your PET is clear then you will be NED. That brings up issues with treatments (although it's a great place to be!!). Interfuron will be offered. Trials that will be offered will probably have a placebo arm.  You need to think carefully about that.  Have them test your hla to see if you are eligible the vacine trials. You also might be offered radiation.

Gather your mental strength and wait for the results of the PET before any decisions are made, they also might not discuss options until the other nodes are taken.

Linda

Hi Dave,

I'm so sorry that the news has changed.  You have a great attitude which will get you far!  As for tests, my docs ordered LDH levels, PET scan, and MRI (mostly for baselines, I think) after finding my one positive node and before my lymphadenectomy.  There are a few trials out there for this Stage, and at this step the first one I am thinking of is a comparison of lymphadenectomy vs. watch-and-wait.  I think a lot of people just have the surgery done to play it safe, but it's good to know ALL of your options.   After surgery, assuming they don't find anything, then there's the option of interferon (regular or the less-often used pegylated), and perhaps an ipi trial (ipi vs. placebo).   As you know, the waiting is the hardest part, but arming yourself with information is what I've found help me. 

Take care, and let us know what goes on with you.

Best,

ChristineL

Hi Dave,

I'm so sorry that the news has changed.  You have a great attitude which will get you far!  As for tests, my docs ordered LDH levels, PET scan, and MRI (mostly for baselines, I think) after finding my one positive node and before my lymphadenectomy.  There are a few trials out there for this Stage, and at this step the first one I am thinking of is a comparison of lymphadenectomy vs. watch-and-wait.  I think a lot of people just have the surgery done to play it safe, but it's good to know ALL of your options.   After surgery, assuming they don't find anything, then there's the option of interferon (regular or the less-often used pegylated), and perhaps an ipi trial (ipi vs. placebo).   As you know, the waiting is the hardest part, but arming yourself with information is what I've found help me. 

Take care, and let us know what goes on with you.

Best,

ChristineL

You're situation sounds similar to mine.  Lymph nodes "looked" fine when they removed them but oops….microscopic amounts of Mel in two nodes.  I had all the lymph nodes removed from under my right arm.  Not a horrible surgery, like everyone I hated the drain tube!  But I was up and about pretty well, except for the stupid drain.

I had blood work, CT and Chest X'ray doneprior to surgery .  I had a PET/CT done 6 months later.  Now regarding future treatment, many people will tell you stage 3 is a weird place to be, not many clinical trials but yet we're at a fairly dangerous spot.  All I was offered was Interferon or "Wait and Watch".  I did a lot of research on Interferon, don't feel like you need to make a decision that day, take a couple of weeks.  I chose wait and watch, it is a personal decision. 

The only regret I have about not trying interferon is now that I know a little more I understand that to qualify for most all trials I must have tried one other protocol and failed before entering the study.  Good news is at this point I am 8 months NED so it doesn't matter (at least so far).

Good Luck,

Mary

Stage 3a

You're situation sounds similar to mine.  Lymph nodes "looked" fine when they removed them but oops….microscopic amounts of Mel in two nodes.  I had all the lymph nodes removed from under my right arm.  Not a horrible surgery, like everyone I hated the drain tube!  But I was up and about pretty well, except for the stupid drain.

I had blood work, CT and Chest X'ray doneprior to surgery .  I had a PET/CT done 6 months later.  Now regarding future treatment, many people will tell you stage 3 is a weird place to be, not many clinical trials but yet we're at a fairly dangerous spot.  All I was offered was Interferon or "Wait and Watch".  I did a lot of research on Interferon, don't feel like you need to make a decision that day, take a couple of weeks.  I chose wait and watch, it is a personal decision. 

The only regret I have about not trying interferon is now that I know a little more I understand that to qualify for most all trials I must have tried one other protocol and failed before entering the study.  Good news is at this point I am 8 months NED so it doesn't matter (at least so far).

Good Luck,

Mary

Stage 3a

Dave – my heart goes out to you right now – especially after they told you the results were negative yesterday.  When it rains it pours and I hope things will calm down for you soon.  I can tell you that it does get easier to deal with and that sadly melanoma hits both the young and old regardless.  We got that same news over year ago the week after my husband turned 41 – they found one or two melanoma cells in one node (his breslow was 1.3 with low mitosis).  It took pathology a while to determine that they were in fact cancerous cells in his node and we waited many torturous days for the news.  I am not sure if you are getting a second opinion because sometimes pathology isnt cut and dry.  After my husband got the news, he was scheduled for the complete axilla lymph node dissection but before that they did PET/CT scans, and I am sure they will do the same for you.  You wont really know your true stage until you get scans and if those are clear, after they take out the rest of the nodes.  The majority of people usually don't find additional cancer after the CLND – I think around 8-10% of people have additional positive nodes.   As others have said, the worst part of the CLND is the drainage tube which we affectionately called the "dingleberry".  You will celebrate when that is removed after a couple of weeks!  If you remain Stage 3a, there arent a lot of options except observation (what we chose), interferon, and  maybe one or two clinical trials.  The adjuvant therapy clinical trials usually require you to start 8-12 weeks after surgery and no later – so start searching clinicaltrials.gov now if you want to go that route.  I know the Ipilumamab adjuvant trial is double blind and will only take Stage 3a with a certain amount of cancer cells.  My husband didnt qualify due to only having a few cells.  Hopefully there will be more options for Stage 3a in the near future but right now its kind of in limbo.  Feel free to ping me with questions and you can see my husband's story here with a scary pic and all: http://emandmichael.wordpress.com/melanoma-information/

All my best to you

Emily, wife of Mike – stage 3a

Dave – my heart goes out to you right now – especially after they told you the results were negative yesterday.  When it rains it pours and I hope things will calm down for you soon.  I can tell you that it does get easier to deal with and that sadly melanoma hits both the young and old regardless.  We got that same news over year ago the week after my husband turned 41 – they found one or two melanoma cells in one node (his breslow was 1.3 with low mitosis).  It took pathology a while to determine that they were in fact cancerous cells in his node and we waited many torturous days for the news.  I am not sure if you are getting a second opinion because sometimes pathology isnt cut and dry.  After my husband got the news, he was scheduled for the complete axilla lymph node dissection but before that they did PET/CT scans, and I am sure they will do the same for you.  You wont really know your true stage until you get scans and if those are clear, after they take out the rest of the nodes.  The majority of people usually don't find additional cancer after the CLND – I think around 8-10% of people have additional positive nodes.   As others have said, the worst part of the CLND is the drainage tube which we affectionately called the "dingleberry".  You will celebrate when that is removed after a couple of weeks!  If you remain Stage 3a, there arent a lot of options except observation (what we chose), interferon, and  maybe one or two clinical trials.  The adjuvant therapy clinical trials usually require you to start 8-12 weeks after surgery and no later – so start searching clinicaltrials.gov now if you want to go that route.  I know the Ipilumamab adjuvant trial is double blind and will only take Stage 3a with a certain amount of cancer cells.  My husband didnt qualify due to only having a few cells.  Hopefully there will be more options for Stage 3a in the near future but right now its kind of in limbo.  Feel free to ping me with questions and you can see my husband's story here with a scary pic and all: http://emandmichael.wordpress.com/melanoma-information/

All my best to you

Emily, wife of Mike – stage 3a

Dave, so sorry to hear this. Doug's news came about the same way. As soon as we got the original diagnosis, I went to the health food store. Long story(2 yrs. before I became aware/interested in more natural healing for cancer & other serious diseases). Anyway, I bought several supplements &  we have been juicing & cut out lots of processed foods & sugars. This has been for almost 2 months. We had a second opinion yesterday @ Vanderbilt. He is considered stage3. Cancer in 1 node out of 15. They suggest the clinical trial over interferon. It is a double blind & the side effects are pretty serious too. I am not sure what is best. I know that this diet can only boost his immune system & make him overall healthier.  I also bought him an all natural deo over his anti-perspirant also. I know this sounds a little rough. He has a very physical job & he has been fine with it. I even make it through an hour aerobics class with mine. I had read about some of the ingredients in anti -per. being linked to breast cancer & alzheimer's. It just made sense to keep it away from his lymph nodes. This is very scary. My husband is strong & healthy & we are going to fight this together whatever he decides to do.  Stay strong & positive. There are many survivors still out there. Pepper.

Dave, so sorry to hear this. Doug's news came about the same way. As soon as we got the original diagnosis, I went to the health food store. Long story(2 yrs. before I became aware/interested in more natural healing for cancer & other serious diseases). Anyway, I bought several supplements &  we have been juicing & cut out lots of processed foods & sugars. This has been for almost 2 months. We had a second opinion yesterday @ Vanderbilt. He is considered stage3. Cancer in 1 node out of 15. They suggest the clinical trial over interferon. It is a double blind & the side effects are pretty serious too. I am not sure what is best. I know that this diet can only boost his immune system & make him overall healthier.  I also bought him an all natural deo over his anti-perspirant also. I know this sounds a little rough. He has a very physical job & he has been fine with it. I even make it through an hour aerobics class with mine. I had read about some of the ingredients in anti -per. being linked to breast cancer & alzheimer's. It just made sense to keep it away from his lymph nodes. This is very scary. My husband is strong & healthy & we are going to fight this together whatever he decides to do.  Stay strong & positive. There are many survivors still out there. Pepper.

Much of my treatment was done at Mayo in Rochester, MN.CT/ PET scan was every 3 months…my LDH levels have always been checked with each blood draw…I have fewer PETs now that I am NED, but continue with CT and MRI's. My LDH is still  checked at each blood draw at Moffitt.

Much of my treatment was done at Mayo in Rochester, MN.CT/ PET scan was every 3 months…my LDH levels have always been checked with each blood draw…I have fewer PETs now that I am NED, but continue with CT and MRI's. My LDH is still  checked at each blood draw at Moffitt.