New here and looking for some insight.

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5/2/2014 8:24am
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Replies: 16

I'm relatively new to the boards here.  No offense intended, but I'd sure rather NOT be here.  Currently making decisions for my father, who was staged at IIA (although there are some who feel it's closer to IIB or IIC due to the size of his nodule at 4mm). 

The long and short is that it was a 4mm nodular-type Spindle Cell Melanoma on Dad's shoulder/back area.  WLE was performed with good margins (>2cm per surgeon).  SLN biopsy was negative.  There was focal ulceration and positive mitotic rate.  Apparently, through my research, it appears that the these characteristics are not terribly uncommon with Spindle Cell type tumors.  Dad is BRAF negative.

He had his WLE in mid-March.  Just had his first Oncologist appt. at UPMC on Wednesday, which is supposedly a world-renowned facility.  Dr. Kirkwood (who happens to be "the guy" on the major study that pioneered the Interferon craze) recommended Interferon (the 1-month, followed by 11 months).  Dad was not happy about it, but was trying to stay positive and confident.  He was told he could receive treatment at his local hospital through an Onc. that would work under Kirkwood's direction.  He had that appt. yesterday, and the local Onc. said he absolutely refuses to administer the Interferon, and strongly advises against it in my Dad's case.  My Dad has relatively severe MS and already has pre-existing depression, with a "near" suicide attempt a few years ago (he had the gun in his hand but couldn't pull the trigger).  Those two factors alone were enough to make the decision for the local Onc.  The local Onc. said his options are to go back and receive his treatment through Kirkwood in Pittsburgh, or try to find another local Onc. who will do it.  But again, he strongly urged him to not pursue this treatment.  He made the valid point that "If a guy BUILT the car, he's gonna try to sell it." in regards to Kirkwood's recommendation. This, of course, has left my Dad feeling terribly confused. 

I'm a Respiratory Therapist, so I do have some medical background.  I've read the studies and done my homework as thoroughly as possibly during this whirlwind.  I was actually surprised that it was not only "offered" by Dr. Kirkwood, but pretty much insisted upon.  Unfortunately I wasn't able to be present at the appt, as I live on the other end of the state.  But as soon as I heard the treatment plan, I had concerns about it immediately.  My Dad currently takes another form of Interferon (Avenox) for his MS.  It's a once/week injection with which he has pretty significant side affects.  Sometimes the day after his shot, it's all he can do to walk to the bathroom.  He gets debilitating headaches and body aches, among other symptoms, and has even had convulsions until they adjusted dosage for it.  He's 62 years old and in questionable health as it is.  I just didn't see how an even HIGHER dose of Interferon multiple times per week for a year WOULDN'T put him on flat on his back.  And after pouring through the research, I'm just not very certain at all that the benefits outweigh the potential risks. 

I feel terrible that my Dad has been placed in this position and is now confused as to what to do, but I AM glad that at least he has both arguments (both for and against) regarding Interferon treatment on the table in front of him. I don't want to make the decision FOR him, although I think he would prefer that.  Instead, I'm trying my best to present the information and urge him to make a decision that HE'S comfortable with.  I've read here in multiple threads that once a decision is made, to never look back, and I've shared that advice with him. 

This has been truly one of the most difficult experiences thus far, and I guess I was hoping for advice of any kind.  Thoughts on treatment, etc.  I just want to do the right thing for my Dad, and when you have two such polarizing different opinions on the matter of treatment, it CAN be quite frustrating and confusing.  I apologize for the lengthy post, and thanks in advance for any insight you could offer.  God bless you all who are going through this, and god bless this site for the invaluable information I've gained already.

Sorry you have had to join us. My personal feeling is that since your father is stage IIA, there is no reason he should be undergoing interferon treatment. The melanoma treatment guidelines I received from my treatment coordinator shows two options for stage IIA... clinical trial or observation. Interferon only becomes an option at IIB or IIC. I personally believe the risk/reward tradeoff for interferon is simply not there at any stage based on the study results I have seen. In your father's case, it sounds like the risks could be even higher so I would avoid.

Your father seems to have enough on his hands so observation may be your best course. If the disease progresses to stage III, you can re-evaluate the situation. Good luck with this - I know it is hard.  

Kevin

 

 

Thank you Kevin.  That was my thought process on it as well.  Even if he IS a IIB or IIC, which I suppose is almost a matter of opinion given his "borderline" scenerio, I just don't see the POSSIBILITY of the marginal at best benefits to be worth the horrible side effects and toxcicity of the treatment in his particular case.  If he were a young, otherwise healthy individual, I could possibly make a case for it.  But being as he would be entering into this treatment already significantly compromised, I just don't see this being an option that makes sense for HIM.  I certainly wouldn't knock anyone for taking the treatment, as each case is different, and I completely understand the psycological need to do SOMETHING.  "Watch and wait" is probably a difficult thing to wrap your head around when you're the one with the cancer.  I guess I just feel a bit guilty for encouraging my Dad to not accept treatment, but I'm truly just trying to do what's best for him and what will give him the highest quality of life for whatever tiime he has remaining here in this world.  I feel like the rug was pulled out from under him here.  He was so pleased that we were able to get him an appt. with a Melanoma Specialist who is considered to be world-renowned.  I was the one who recommended him!  And now I'm disagreeing with his treatment plan after the very first appt.  My Dad seemed to really like Dr. Kirkwood, and I don't want to damage that relationship for possible future interactions.  It all just seems like a very slippery slope at the moment. 

I agree with Kevin - but would take it one step further. Would your dad accept a recommendation to get another opinion? We went to Penn, to Lynn Schuchter, for our third opinion and she was great about going through all the options. Even at Stage IIB she didn't recommend interferon for my husband because the gain was not expected to be enough to make the "pain" worthwhile. She went through the list of clinical trials that were available at that time for Stage II and helped us get in touch with the right person at the one we hadn't already contacted. We ended up going to Baltimore (about 45 minutes from home) monthly for six months (and now yearly for follow-ups) so my husband could participate in a vaccine trial there. For "watch and wait" (the phase we are in now that Robert has no evidence of disease) we are able to do the periodic visits in D.C.

The upshot is - it was well worth the one-time trip to Philadelphia to see Dr. Schuchter and get her assistance in figuring out what to do.

Wishing you the best --

Hazel

blogging at www.hazelbecker.com

Thank you Hazel.  Yes, I've considered that option as well.  They live near Pittsburgh.  I live in Lancaster County.  I had offered to set up a 2nd (or 3rd as the case may be) opinion for him somewhere near me, such as Penn or Johns Hopkins.  This all just happened yesterday, and I think he's still a bit irritated by all of it.  He didn't seem too interested in muddying the waters even further by bringing in additional opinions at this time, but he may change his mind as the shock of yesterday wears off. 

Question regarding your husband: Did he have lymph node involvement that made him a stage IIB?  From what I can gather, the only thing that would possibly bump my Dad into IIB territory is the size of the tumor.  I believe 4mm is the "cutoff" so to speak between A and B, and his was 4mm. Possibly that combined with his positive mitotic activity and "focal ulceration" (not really clear on what that means) could conceivably bump him to IIB or even IIC I guess.  I really don't know.   I do know that the original report from the hospital and/or surgeon where he had his WLE has him down as a IIA. 

Is there a reliable source that you're aware of that lists open clinical trials based on staging?  I'm certainly not opposed to him receiving treatment. I just don't think, in his case, Interferon is the answer we're looking for.  A quick search on melanomacenter.org showed no results for clinical trials for stage II.

Unfortunately, either Philly or Baltimore would be some significant traveling for them, but I suppose it's not out of the question if the right situation presented itself.  It would obviously be much more convenient to continue with UPMC, as they are also very highly recommended, but I'm not sure how Dr, Kirkwood is going to respond if Dad decides against the Interferon.  I would THINK that he would be respectful of that decision, but I haven't met him and I really have no clue. 

In our case it was the size of the lesion (9 mm) that made it IIB. Big, deep, messy - even though it had not moved to the nodes and was not ulcerated. There were positive things about Robert's case - including signs of regression, meaning that it appeared his immune system was in on the battle - as well as negative (strong mitotic rate as well as the size of the lesion). But none of the melanoma specialists we consulted with were big on interferon, even though Robert is otherwise healthy and strong.

I'm generally in favor of finding a melanoma specialist you trust and believe in to be your primary guide through the maze. It doesn't sound to me like Dr. Kirkwood fits, though. Perhaps the local onc. can suggest a melanoma specialist to consult with?

As for trials - start on this site, at http://www.melanoma.org/understand-melanoma/melanoma-treatment/clinical-... - it will help you get started. But evaluating the options is something you might want to have a melanoma specialist help you with, or at least the local onc. if s/he feels comfortable advising your dad about melanoma trials. If Hopkins is better for you than Penn,see if you can get an appointment with Dr. Scharfman or one of the other melanoma docs at the Timonium office.

If you have more questions feel free to ask!

~Hazel

 

blogging at www.hazelbecker.com

I was a caregiver for my Dad.  He was diagnosed with a stage 2A lesion.  He had the WLE only (age 81) because even if the SNB was positive, he didn't want the lymph node dissection.  I would never had put my dad on Interferon  so I didn't see much benefit to the rest.  It's good to research and give your input.  I ended up making all the tx decisions for my father, he just didn't want to know, he wanted to concentrate on living.  Someone recently posted an article on who should do interferon... And I'm pretty sure your father wouldn't be in that group.   My father recently passed away from melanoma at age 89.  It took a long time to really metastasize and he had good quality of life in the meantime.

good luck on your decisions.

Janner

Thanks so much Janner.  It helps to know that I'm not in this alone, and that someone else has been in my shoes.  I've read a lot of your replies here on the board, and I'd like to thank you personally for your contribution to this site and the invaluable insight you're able to share.  My mother just doesn't have the medical understanding to make any informed decisions on the matter, and unfortunately neither does my Dad.  That puts a lot of it on my shoulders.  I don't mind, as I love my family deeply.  But I just want to make sure I'm doing the right thing before I make a true recommendation to Dad, as I know that he'll likely do whatever I suggest. 

 

Also,  my condolences on the loss of your Dad.  He was extremely blessed to have a son like you in his corner. 

My dad had two kids, a son and a daughter:  Scott and Jan.  :). This wouldn't be the first time I've been gender switched on here - something about being logical and less emotional?  There were a ton of Jan's on here when I first visited this site, so I chose the nickname a friend gave me and it is a bit gender neutral, I guess.

thanks for the compliments.  It's never easy making or recommending decisions which affect others, but you do your research, do your best, and don't look back!

Oooops!  So very sorry.  I should have checked your profile perhaps.  In any case, your father was extremely fortunate to have a loving CHILD (in this case a DAUGHTER) such as you!  :-)

 

I will keep it straight to the point here -Interferon absolutely MUST be not,I am repating NOT,be administered to any patient who suffers from depression/mental  disorders/psyhological mental problems or has had histrory of such in the past.

Best wishes

Teodora Chasse

Thank you Teodora.  The SECOND the local Onc. discovered my Dad's depression history, he immediately said "My mind is made up.  I will NOT administer Interferon to you."  So, it appears he has the same opinion as you. 

My guess is that his vitamin D levels are very very low.  High vitamin D levels would help his MS and melanoma. The best way to increase vitamin D levels is to get some sun at lunch time.   You may want to check on"Healing Cancer from the inside out".    Also see:

http://www.youtube.com/watch?feature=player_embedded&v=CncI5j5QzVg#t=0

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Thank you Gene.  I'm not aware of a Vitamin D deficiency, but I'll have it checked.  I'll also take a look at the video you posted!  I appreciate your input! 

Anonymous - (5/5/2014 - 11:09am)

Hi,

Sounds like you and your Dad are on board with a second opinion, which is what I would recommend. I'd even say a 3rd at this point would be good.

Here is some advice:
- Get all reports and images. You can get a release from your Dad and have it mailed it faxed to you. Images, I have found can be picked up at the end of the day after you've taken them. Be sure you have the CDs and reports in a folder for you Dad and that you have everything on a thumb drive and a copy of the discs.
- Find someone to go with your Dad when you are not available. He won't remember everything and you need a detailed oriented people who is really smart and who asks questions to go with him.
- Have your Dad call you during the appointment and put you on speaker phone. In this day in age even if you can't be there you can be included via phone. Video too, if the center has WiFi and your Dad can use Skype.
- Find out what images have been taken. You should have the whole body and brain. Get a second opinion on the results and make sure the radiologist looks at the images. Don't rely on the report, we had the first radiologist miss brain mets (cancer). We would not have found this out for months if the 3rd melanoma specialist had not had Gus radiologist look at the images.

My Mom had had treatment with Yervoy and has done really well. Not sure if this is recommended for people with depression, but its done wonders in reducing the cancer for her.

Good luck.

Thank you.  That's valuable advice for sure.  Dad is having a PetScan tomorrow, and I think we'll decide what direction to go after we get results from that.  Obviously, if there are areas of concern, that will need to be addressed first.  If it's clean, we'll make a decision on the Interferon, and probably look into getting a 3rd opinion. Unfortunately, I don't think the 3rd opinion will matter much in terms of whether or not to do the Interferon.  I believe that should be started within 70 days of WLE and I highly doubt we'd be able to get an appointment with a reputable specialist in that short of a time period.  We're already a little over a month and half removed from his initial surgery.  I need to arrange to get a all of his records in my possession soon though, as once we have chosen a 3rd opinion, I can get that information to them ASAP.

This is a relentless disease.  I think we all breathed a sigh of relief after the surgery and the initial positive news regarding his SLNB.  But that feeling was short-lived, as we were soon thrown back into decision making process regarding possible treatment.  I guess I'm guilty in that I kinda just expected the Oncologist to take the "watch and wait" approach in my Dad's case.  When he recommended Interferon, it definitely threw us all for a bit of a loop.  But we'll get it figured out and continue the fight.  "One step at a time" is what I keep preaching to my Dad.  "We'll cross bridges as we come to them".  But that advice is often easier to say than practice.  Thanks again!