1461073 tn?1308677548

Lung Cancer metastasis suspected but now they think it's Sarcoma instead

I posted my questions in another forum earlier but thought I'd post this here too as we really have no idea what we are dealing with right now.  

My DH has had stage 1 Lung cancer since 2016 that was unable to be removed d/t too much scar tissue, 5 radiation treatments done and the tumor had shrunk to less than half the original size, he had a scan 3 months after radiation and all signs were good, and he was to repeat scan in 6 months.  4 months after the 1st scan was done I took him to ER with unrelieved chest pain, that moved to his epigastric region-his gallbladder has been removed already so we knew that wasn't the culprit.  

CT scan revealed (2) 4+cm masses 1 on each adrenal gland and 2 enlarged lymph nodes-DX suspected lung cancer metastasis with lymph node involvement.  A biopsy on 9/14/18 left his Oncologist in shock as only the Preliminary report was available so far but he said the findings so far are "weird and not at all what they were expecting to find"  Impression of Preliminary report "Vimentin positive poorly differentiated epitheloid malignancy" (which is a long name for a Sarcoma).
He had another follow up on 10/2/18 still a Preliminary report is all that was available but the Preliminary said "The current immunohistochemical signature is non-diagnostic, but could be seen in several neoplasms, including Ewings/PNET. Additional studies are Pending; a final report will be issued when the latter are complete"   This time they were also out of tissue to continue testing and instead of a needle biopsy they wanted an entire lymph node this time, so DH had surgery to remove an entire lymph node on 10/5/18 so testing can resume, and he is recovering well from that.  

His condition, weight, etc have all be declining very rapidly, and whatever this is it is very aggressive. He has a lot of pain in random areas, nausea and vomiting, he has dropped from 204 on 8/24/18 when he went to ER, to 183.2 at time of his surgery on 10/5/18.  We are really hoping they get a final report soon so he can begin treatment for this.

Have any of you all had this issue if so can you tell me what your diagnoses was and what treatments etc. worked for you?  

Any suggestions on things that can be done to help keep his weight loss from occurring, or at least slow it down some would be appreciated because he is so weak right now.  He is currently on Marinol, CBD oil, Phenergan, Zofran, and Ensure to help stimulate appetite, stop the nausea and vomiting, and the Ensure to add in some extra calories/nutrition along the way, I have also ordered him some Liquid Hope, and am trying to feed him as high of calorie, good protein meals as possible when he can keep it down.

Any additional suggestions, info, etc. would be welcomed and greatly appreciated. Thank you and have a nice day!! CJ  
2 Responses
1530171 tn?1448129593
Isn't sugar the proffered food  of cancer cells for their growth?
Liquid hope is fine, but sugar packed Ensure ( sugar-free versions could be even worse )
is not something I would  take  under such circumstances.
The anti-emetic anti-nausea  chemical/drug treatment is TOO aggressive to my opinion.
His risk of heart  arrhythmia  would be increased should his potassium  and magnesium levels be low due to vomiting and nausea, when taking Zofran and  Phenegram. ( RBC test for electrolytes is needed)
The negative effects of the radiation in combination with reduced ability to absorb fat-soluble vitamins A,D,E and K (due to lack of a gallbladder) , cannot be  corrected faster by such a protocol.
His weight loss is not excessive, so please do not feel the urgency to take aggressive action.
You might be making matters worse for him. His body needs  ample time to re-balance.
Enzymes, probiotics and mineral supplementation , might be very beneficial.
Seek a reputable holistic nutritionist  with experience in this area.
High calorie and quality protein, may not necessarily be in his best interest .
Excess empty calories could be additional burden on his digestive system/ liver/ pancreas/detoxification/kidney and quality protein could be  contributing to harmful bacterial growth and protein is the most complex of the macronutrients and the body has to work harder to digest it.
His nutritional intake has to be carefully tailored to his exact needs.
You can also consider  a functional adrenal test to rule out any  adrenal hormone imbalances.

Best wishes,

Thank you Niko for the excellent info.  

My goal is to make things better for him, not worse, so thank you for pointing things out that I may be doing that could be having the opposite effect.

He has never been much on sticking to a proper diet, and pretty much eats/drinks what he wants, when he wants it. Right now, with him eating so little, we felt that anything  would be better than eating nothing at all.  

I too questioned the Zofran/Phenergan protocol, along with the Marinol, as being too aggressive.   The Oncologist just put him on the Zofran and Marinol on 10/2/18.  He said he wanted to try it for a week to see if it helped. The CBD oil was recommended by a friend whose child is battling cancer and has helped his N/V and appetite a lot so my hubby wanted to try it.  We got it approved by the Oncologist prior to ordering it,  and it just came in yesterday, so it's only been used last night and today.  So far the protocol has helped some, but not enough IMO to warrant the amount of different medications, etc. being given. Which could be causing more harm than good.

I will certainly look into the "Enzymes, probiotics and mineral supplementation."  Any particular strengths/brands/etc. you can suggest?  

He was put on the Ensure by the doc because he was unable to eat anything, or keep down what little he ate, and he has no energy at all since all the weight loss started.  He has only drank it one time, so I'll just tell the doctor we're not going to use it, and just use the Liquid Hope instead.  

I forgot to mention in my original post that he also has something going on inside of his mouth under the surface of his gum- (both the Oncologist and Surgeon suspect an enlarged lymph node that is also hindering his ability to eat more solid food as it causes him a lot of pain in that area).  He has an appt with a specialist to see if anything can be done to help with that. We've tried mouth rinses, and Ora-gel, but neither of those helped.  

His labs have been recently checked, and his electrolytes are currently within normal limits, (not sure how they are WNL but this nausea and vomiting is not something new for him.  This has been going on for about 3 yrs now, and the GI doctor has run tons of tests and can not figure out what's causing it).  The weight loss is new though, and it just started on 8/24/18. When going to the GI specialist hubby refused to have an EGD or a Colonoscope done, but the GI doctor ran all the tests that he would allow him to run, and all tests were negative and nothing was found).  That's when he tried different antiemetics most didn't work at all, and he started taking Phenergan which helps, but doesn't stop it completely).  He generally vomits when he 1st gets up from sleeping or a nap. His head is elevated on pillows to prevent reflux but usually still like clock work when he stands up for the first time he throws up bright yellow bile). There are times since his ER visit 8/24/18 that he vomits during the day, but that doesn't occur a lot.  We will for sure keep those labs monitored closely, but strangely his labs have remained pretty consistent, and WNL the entire time he has had this going on.  We've also went to different labs to ensure it was errors in one lab's readings etc. and it's always the same.   (his labs are actually better than my labs).  

I will seek out a holistic nutritionist in our area to try to help balance his nutritional needs accurately, if he can/will eat what they suggest.

Thank you again for the info it is appreciated.  Have a Nice Night CJ
Look into the following:
-Probiotics: :  HCP®Synbiotic Kit by Progressive Nutritionals
-Enzymes + : Superenzymes by NOW         Also juicing organic vegetables  (more) and fruit (less)
-Minerals and electrolytes: Coconut water with no sugar added (natural).
Also look into pastured beef bone broth ( simmer bones in water for 48 hours in crock pot with couple spoons of raw unfiltered apple cider vinegar  some natural sea salt)  and also pastured chicken/turkey bones (same like beef bones but for 24 hours). Perfect for digestive health, minerals, joints, hair, skin etc.

The bigger issue with labs is not usually with the labs, lol!
Erroneous  tests ordered by doctors, controversial lab reference ranges and the resultant often harmful
treatments (or lack of) are a big part of the third leading cause of death (Iatrogenic)

eg: A 4x cortisol saliva test (cortisol is a circadian hormone) is  much more useful over the 1x or 2x  cortisol serum test, often ordered by conventional doctors.

B12 (cobalamin) levels derived from standard  blood testing  are totally inaccurate, when the patient has low gastric acid , thus unable to convert cobalmin B12 into the bioactive form of b12, methylocobalmin.
There are patients who suffer unnecessarily for the rest of their lives, because their their cobalamin B12 levels were "normal"

Best wishes,

Thank you Niko so much for the info on the labs (or not the labs lol) the Enzymes, Minerals, Probiotics info,  as well as, the foods/drinks and preparation.  Your help is so appreciated.  Have a nice day!!! CJ
We finally received the Diagnoses from his 2nd biopsy on 10-16-18.  Diagnoses is Epithelioid Angiosarcoma High Grade.  The Oncologist said there is nothing they have to offer him in terms of treatment  because of the rapid very aggressive progression and how far it has advanced already, and how rapidly he is declining from it. He had us go ahead, and get him set up on Hospice that same day.  
The love of my life passed away on October 24th 2018 due to this horrible disease.
1530171 tn?1448129593
I just received notification of your post and I'm so sorry about your loss.
It is unfortunate that you lost the love of your life, from  Andiosarcoma after his original
lung cancer diagnosis  ( and consequent treatment ).
Angiosarcoma  has been associated  with  radiation exposure or treatment ( the very same treatment originally  prescribed to "cure" his lung cancer).
It is in a way a blessing that he's no longer suffering from the terrible effects of this disease,
however,  your life will never be the same.
I  hope that you find the strength within you  to  stay with the best memories from all the years you had together and to be able to  live your life the way HE would like you to live!
God bless!
I'm sorry Niko but I just saw your post.  I wanted to say thank you for everything.   Yes, my hubby and I both suspected the radiation as having a role in it.  

I can honestly say due to the aggressiveness of this sarcoma that out of all the people I have worked with, and I've been around who have passed from cancer or any other issue, I have Never seen anyone decline as rapidly as he did.  Everyday brought on new challenges, more confusion, more weakness, more weight loss, more pain, etc., and the last 2 weeks each day there was more and more neurological involvement that was causing some very significant confusion, he had little to no control of his hands/body when he was up in a chair, it looked like he was throwing baseballs with both hands, and he had zero control over it. If he was trying to hold a drink, or whatever because of this he would literally throw it across the room.    

He wasn't trying to walk at all during this time because he'd get dizzy, and said he wasn't just dizzy in his head, he said it was like when the dizziness started his entire body wanted to, and would attempt to go into the circles that he was having with the dizziness in his head.  So for the last few days he decided to remain in the bed because he didn't have the dizziness, or the involuntary hand movements, etc.  when he was laying down.  But he was sooooo very sick, and a couple days prior to his passing even though he wasn't eating the vomiting started up again, and each time he'd get sick he'd get weaker, and weaker.  I do know that he's no longer suffering, but I sure miss him every second of every day, and life will Never be the same again for sure.        
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