jbronicki

Oh my gosh, something made me check the board, I haven’t in a while. When I saw the title, I didn’t want to open it. It’s just devastating news. I can’t process it really, there is no truer patient advocate (and rattie) than Bubbles. She did more good and provided more information to patients then anyone I have encountered, she was fearless! I never knew whether to call her Bubbles or Celeste or Les, she was all 3 to me! I actually speak about her often in my job now as a clinical trial manager, all I can say is I hope to make her proud….her family is so lucky to have her, no words for their loss, so sorry

That is the way to start 2022! So happy for you, that is such incredible news! Congratulations on such a phenomenal response, wishing you only the best. I love that they gave you a certificate, that is awesome 🙂

Wow, that is such incredibly sad news. I haven’t been on the forum in a while and just checked today, devastating news to hear. I still remember Mark’s story of his incredible work in London on the Thames. He was so humble and so nice. Thank you Ed for posting the link, it was nice to see all the pictures of him and his beautiful family. Hard to believe he had to go through all that on top of all the COVID restrictions, etc. That is truly a battle. May he rest in peace, his family clearly adores him and was clearly beloved by so many, so sad for them. No other words that might make sense of any of this.

Hi Amanda,

So good to see your post and so proud of you on the clinical trial, you are truly amazing and so glad that response is occurring, but so sorry for all the stomach problems.  That is so rough and we all definitely want you to keep your strength!  I can only offer this as you never know what will actually do the trick for any one person:  When my mom was doing chemotherapy and couldn’t eat really anything, the one thing she really liked, which doesn’t sound great, was “creamed spinach” from a can, it just seemed to be the one thing that she could handle and enjoyed and was high in iron, calories, etc.  She also always loved grilled cheese and oatmeal too, as mentioned above.

Keeping fingers crossed that one of the suggestions that the group has mentioned will do the trick!  Also, Blizzards from Dairy Queen sound good too 🙂

Thinking of you!

Jackie

So glad to hear you have a consult with surgical oncology at Memorial Sloan Kettering and I think any surgeon there is going to have the experience you want for your husband.  They will have seen enough melanoma in the head/neck area.  They are one of the top places in the US.

My husband’s surgery was February 2014 so it has been 7 1/2 years.  But I still remember the day of the surgery like it was yesterday, it is intense period when you just don’t know the status of everything.

Wishing you and your husband the best possible results and that everything is negative, etc.

Hugs

Jackie

Hello JD, and so sorry you had to join this group and you are right, you are in the very intense information gathering stage which can be very overwhelming.  Bill is absolutely correct, seeing a good melanoma specialist is key as well as melanoma surgeon.  I would definitely opt for Sloan Kettering even though the distance can be challenging.  When my husband was diagnosed, he had a very large melanoma on his back shoulder area (we only knew the punch biopsy which was 5 mm, but it turned out to be 22 mm when he did the WLE and SNB).  That is not meant to scare you, just that they do need to get clear margins.  The melanoma’s located on the head can be challenging just by the nature of they are close to a lot of stuff that matters, so important to have a really good melanoma surgeon for the WLE/SLNB.    He got the diagnosis from his local dermatologist on a Friday and I think it was about 17 days before his surgery at MD Anderson on a Monday.  The wait, while extremely hard, was worth it to have that level of expertise during surgery and follow-up after the surgery.  Plus, if needed, access to clinical trials, etc.  He has not needed follow-up treatment yet since his surgery, he was on wait and watch, but this was before all the approvals for adjuvant (after original treatment which was surgery) therapies.  There are a lot more proactive options depending on what stage he is at, hopefully won’t need any of those though.

My husband had a great melanoma surgeon, which is probably also important.  He had a visit before the surgery, pretty standard visit where they looked at the melanoma and planned their surgical approach.  Then after surgery we met with an melanoma oncologist, however, this was several weeks after the surgery.  He had to wait weeks before scanning (they have to let the area settle down after surgery to get accurate assessment/imaging).  Again, depending on what they find during removal and SLNB will guide what follow-up they recommend. My husband was high risk due to the size and that it was possibly not the primary site, so he had more regular scans after his SLNB came back negative.  He had three nodes removed based on the injection.

I work at a large cancer center.  They are operating pretty normally now and have such strict COVID protocols  with our immunocompromised population.  We are able to operate fairly normally for the patients, so not seeing the issues of normal hospitals right now, as you noted.

One silver lining of the pandemic (if you can call it a silver lining) is they are doing way more video consultations in response, so you may be able to talk to a doctor before traveling there.

Bill will have more details regarding the process there, that is one of the battles of any disease, is just getting through the system.  That can be it’s own very challenging issue.

FYI, my whole family came from upstate NY, much love for the area.

Many hugs, just keep gathering the information, you already are such a great advocate for your husband.  Doing everything right.

Jackie

Amanda, always in awe of your absolute amazing personality and determination.  I started reading about STING last night and was having trouble too and then Celeste’s link really helped!

I’m keeping all appendages crossed.

I didn’t think I could have more respect for patients in clinical trials, but now working in a phase 1/2  investigational cancer department, I do!  It has grown many times over.  The patients are EVERYTHING to bringing these treatments to the rest and these protocols are intense to say the least.

THANK YOU.  But most importantly, I’m hoping this hits the target quickly and you get great outcomes for you and your beautiful daughter and family.

Hugs,

Wow, this will be so helpful to future people going through this and I’m absolutely wishing you a great response.  Thank you for taking the time to write this, especially after going through something so intense.

As a lot of us hear from people that face such things, most of the anxiety for people comes from not knowing what is going to happen during these things, your write up will help deal with that, it is invaluable.

You are one tough dude!

Wishing you the best!

Hi Jeanie,

Sorry you joined this group and I know you are in the initial information gathering stage which is always intense.  Any medical intervention or procedure is a risk (side effects, other outcomes)/reward (accurate staging and best practices moving forward based on accurate information) assessment and this assessment absolutely favors getting the sentinel lymph node biopsy.  Nothing is absolutely 100% but a biopsy and subsequent view under the microscope of the tissue is far more accurate and pretty close to 100% than non-invasive ultrasound will be in detecting tiny amounts of melanoma.

I can tell you anecdotally that my husband had his SLNB (they took 3 out along with his large melanoma) after fairly large WLE (he had very large 22 mm nodular melanoma on his shoulder).  No lymphedema afterwards, good recovery and went to work the day after.  He said his armpit pinched a bit from where they took out one of the lymph nodes.  My husband did have ultrasound imaging but not until AFTER his SNLB.  They used non-invasive ultrasound imaging every 3 months to try to detect a recurrence in the Lymph basin.   This was part of his surveillance since he was high-risk (along with other scanning), but not until after they initially checked his sentinel lymph nodes through removal and biopsy.  there are some false positives and negatives with the ultrasound (so some get unneccessary further inteventions like biopsy and some do not get a needed intervention).

You got great advice above form others and data from Celeste.  My opinion is that the benefit/risk is pretty far on the side of getting the SNLB.  I would jump all over that for the information it will provide.

Good luck!  I know it is a lot of tough choices and overwhelming information at time and you will get different information from various sources, so best bet is to go with the evidence and data.

Many hugs!  Wishing you negative results no matter what.

Correction, his tumor was surgically removed in 2014 right after his punch biopsy, sorry I accidentally said 2021.

Hi Danilo,

First, sorry for your diagnosis and you have joined our group.  I have looked at a lot of the research on Primary Dermal Melanoma since 2014 since this was a potential brought up with my husband’s pathology of his punch biopsy before he got this “tumor” removed surgically in February 2021.  His was 19mm deep (22 mm wide) with mitotic rate of 8, no regression identified, no epidermal component etc. His surgical pathology report from his surgery at MD Anderson states that based on the architecture of the lesion, the findings are consistent with metastatic nodular type melanoma but it may correspond to primary melanoma. His margins were clear and all his scans came back clear a month later.

Just to provide some background for about 7 years before his diagnosis he had this weird skin growth in the same place that he asked his doctor if he should be concerned about and general practitioner said no.   It went away completely for about a year and then he said one morning he woke up and felt like he was laying on a golf ball and there was quite a large bluish nodule in the same spot.

So Dr. Susan Swetter (Stanford) was involved in Primary Dermal Melanoma research originally from the VA in California back in 2004.  They believed they saw a small group of patients that had these large nodular-like solitary melanomas that were well-circumscribed with no epidermal component (technically classified Stage 4) found that for some reason had significantly longer survival than would be expected with the characteristics of their “tumors” (breslow depth is high, mitotic rate is high, spindle/epithelial cells, etc) and less aggressive biological process possibly that does not behave like normal Stage 4 metastatic disease and did not spread as quickly.  At this time, there was no way to histologically (staining the tissue and looking at it microscopically for various markers) distinguish between primary dermal melanoma and nodular/metastatic and the literature shows different thoughts on this today.  another study (retroactively looking at records of melanoma patients) at University of Michigan VA also showed a group of melanoma patients with stage 4 nodular-like solitary melanomas that had less expected spread  such as +SLNB, distant spread, etc. They believed this might be a distinct subtype of melanoma that was behaving as a primary and should not be considered Stage 4 but compared more to Stage 1-2 cutaneous melanoma in terms of prognosis and rates of recurrence, etc.. So possibly this is the primary that has fully regressed or actually arisen from subcutaneous tissue rather than skin down as other melanomas do and instead of some sort of  true cutaneous metastasis from a primary elsewhere in the body.  And there was a look at a group of patients in Australia as well and I’ve included these links below and here is synopsis:

By AJCC convention, these cases are classified as stage IV metastatic disease. Our data suggest that these presumed metastatic tumors do not behave like stage IV metastatic disease to the skin via lymphatic or hematogenous spread from an unknown primary site; rather, they are behaving like primary tumors originating in the dermal and/or subcutaneous tissue.

The absence of nodal or distant metastases and the prolonged survival, greatly exceeding that expected, suggest that in our patient a metastatic origin of the disease is unlikely. Instead, we hypothesize that the tumour may represent a primary dermal melanoma or, alternatively, a primary melanoma with regression of the epidermal component, despite the lack of any sign of ongoing histological regression. Moreover, clinical and histological features allow differential diagnosis of this entity from other dermal melanocytic lesions, including cellular blue naevus, malignant blue naevus, epithelioid blue naevus, and animal-type melanoma.^5, 6 Further studies are warranted to better clarify the histogenesis of these unusual melanocytic proliferations.

There is also some similarities with the research for what they called Stage 4 with unknown primary.  These tended to also be typically large, well-defined solitary melanomas with no skin component seen (so is it the primary or metastases from unknown primary elsewhere?).

With all the links and text I copy and paste below, the thing I think it is important to remember is that while it can be important to have the correct pathological/histological diagnosis, Melanoma is Melanoma so the key is to still be diligent and follow the typical protocol for “high-risk” melanoma.  There are now more possible treatment options for people that are no evidence of disease as well after resection/surgery.   Any melanoma can recur or metastasize.  I hope you never do and melanoma never comes back and as Celeste would say, live your life, but it is important to monitor no matter what your ultimate treatment choices that are given to you and I would also recommend that you have your tumor genomically tested just to have information if it was not tested yet.  There has been an incredible amount of advancement in treating based on the mutations you might have that are “driving” the cancer growth.  This is incredibly important knowledge to have in your arsenal.

My husband was considered No Evidence of Disease after his surgery and scans and his SLNBs were negative, but adjuvant immunotherapy was not yet approved, so he has done wait and watch for 7 years.  Quite honestly, he probably would have done that anyway, while I would have gladly signed him up for any trial and any therapy, especially immunotherapy!  His tumor also has the NRAS mutation.      My husband’s doctor at MD Anderson treated him as Stage 4 nodular melanoma patient with no evidence of disease at the time and did not believe the distinction of primary dermal melanoma was particularly useful and put him on the standard protocol of scans every 3 months for 2 years, every 6 months the next 3 years with Brain MRI yearly.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673232/

https://pubmed.ncbi.nlm.nih.gov/11074704/

https://pubmed.ncbi.nlm.nih.gov/32417156/

https://pubmed.ncbi.nlm.nih.gov/19130137/

My husband is 7+ years NED.  Stage 4 with unknown primary

Wow, this is such sad news and I’m so sorry to hear this, thinking of Julie and all the people she inspired and connected with, she was clearly so special.  I know I felt connected to her.  Oh man,  this is hard.  Many hugs to her and all those that had the privilege to know her in person.

Aloha Gary, I agree with JudiAU, there is absolutely nothing better than hearing these updates.  It is true joy!  So happy for you and may the retirement years be more relaxing!

Ditto Ted, keeping fingers crossed as well and I’m thinking about you.  This must be incredibly nerve wracking, it is hard not to worry about this and the waiting is always rough.  Many hugs!