Poorly differentiated neuroendocrine carcinoma - 1262689

venitaw9
Posts:6

my 68 year old wife was diagnosed with Poorly differentiated neuroendocrine carcinoma 3 years ago.she presented with only a chronic cough and was diagnosed by a ct scan for a broken rib..she has had a bio of liver and spine.she had success with radiation of c5 spine and interventional radiation of her liver. she had no response with chemo, epto & carbo and sando. she is diagnosed as CUP.and has been in hospice for 4 months. my question is, her feet are swelling and turn both bright red and or blue or black.sometimes one or the other or both, what does this represent and any suggestions on palliative care. thanks,Steve

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Reply # - March 9, 2014, 06:09 PM

JimC
Posts: 2753

Hello Steve,

I am very sorry to hear of your wife's situation. There are various reasons that feet can swell, but given where she is in the course of her cancer, perhaps it is what Dr. West had described here:

"One leading reason for leg swelling that is affecting both legs and generally symmetric is that the blood vessels can become "leakier" as an effect of the proteins released from the cancer as it grows. At the same time, if people are not eating very well, lower levels of protein in the blood can lead to fluid accumulating in the feet and lower legs." - http://cancergrace.org/forums/index.php?topic=1499.msg8727#msg8727

Dr. Pennell also spoke generally about leg swelling:

"Leg swelling can be from many causes, I actually had a long discussion about a patient of mine today with leg swelling for no apparent reason so this is timely.

The most common reasons for leg swelling in a lung cancer patient (subjective and in no particular order) are blood clots, side effects from chemotherapy or other drugs, volume overload with or without heart failure, and other causes of blockage to lymphatic flow such as prior radiation or surgery to the legs. Less common causes would be things like low protein from malnutrition or kidney failure.

I normally start by ruling out clots first (more common with swelling on one side only) by ultrasound. If that is negative, then I look at medicines that can cause swelling, like steroids, some blood pressure medications, or chemotherapies such as Taxotere. Labwork can determine if the kidneys are functioning properly or if the protein levels are low. History can guide on prior radiation or surgery. If nothing is promising, an echocardiogram can identify heart problems such as effusions or heart failure.

[continued in the next post]

Reply # - March 9, 2014, 06:12 PM

JimC
Posts: 2753

[continued from previous post]

Sometimes it "just happens" for a combination of reasons. Treatments (other than fixing the underlying problem) can include in some instances diuretics like lasix and wrapping the legs tightly in bandages or Jobst hose to decrease the swelling. Elevation of the legs above the level of the heart at night or when resting can help as well. - http://cancergrace.org/forums/index.php?topic=10989.msg89657#msg89657

It's certainly something to discuss with the hospice staff to see if they have any recommendations.

Wishing you and wife peace, comfort and strength.

JimC
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Reply # - March 9, 2014, 06:35 PM

venitaw9
Posts: 6

Jim thank you for the reply. I have read Dr Wests post but not Dr Pennell's, I will discuss further with the hospice staff. the swelling started in the foot on the side that had a prior hip replacement. now the other side is the worst. thanks again... Steve

Reply # - March 12, 2014, 05:45 AM

venitaw9
Posts: 6

Jim after discussion with hospice they said to keep her feet elevated and wait and see how things progress. I understand that the type cancer that my wife has is very rare. Do you all know of any other posts that reference "Poorly differentiated neuroendocrine carcinoma" CUP? Maybe I could get some idea how this type cancer progresses. thanks, Steve

Reply # - March 12, 2014, 08:52 AM

catdander
Posts:

There are many discussions here on the subject. This is a search result of neuroendocrine carcinoma. There's really no difference between differentiated and poorly differentiated in terms of treatment though survival tends to be worse the more differentiated the cells. However those numbers are for a large groups of people. My husband had/has poorly diff nsclc plus other other circumstances that lead to shorter life expectancy yet he's had a much better survival rate than any type of lung cancer.
http://cancergrace.org/search-results?q=%20neuroendocrine%20carcinoma

Reply # - March 12, 2014, 12:29 PM

venitaw9
Posts: 6

Catdander Thank you so much for the link. There I read of many other people with similar symptoms and treatments. I have shared that info with hospice and their Doctor is going to make a "house call" and look at her feet. Imagine that, thank you Grace!!

Reply # - March 12, 2014, 03:00 PM

Dr West
Posts: 4735

I would primarily reinforce Janine's point that there are no specific guidelines or expectations around poorly differentiated vs. better differentiated cancers, except that the pace of progression tends to be faster in patients with a poorly differentiated cancer (and, as Janine noted, there is a lot of variability around that). The edema is often a manifestation of general illness, whether progressing lung cancer, another cancer, a bad burn, infection, or something else, so it tends to be difficult to manage effectively in the absence of an effective treatment for the underlying cancer. leg elevation and diuretics are very sensible recommendations but don't tend to have a great impact in this setting. Unfortunately, nothing typically has a great impact in this setting. I wish we could suggest more.

Good luck.

-Dr. West

Reply # - March 22, 2014, 12:02 PM

venitaw9
Posts: 6

Thanks to all of you for your posts. Every one of you were correct. The Hospice Dr. cane by yesterday and her diagnosis was that the cancer had progressed to the point that it was limiting her heart and lung functions causing the poor circulation to her feet. She prescribed lasix, oral morphine an a anabolic (for infection) and to keep her feet up all of the time. Today her feet seem much better and the oral morphine improves her breathing. Thank you Dr West for GRACE as the posts have helped me understand her cancer as it progresses.

Thanks, Steve

Reply # - May 23, 2014, 03:35 AM

venitaw9
Posts: 6

My wife "Venita" quietly passed away to be with our lord on Monday May 19 2014. She fought at great battle and now may she rest. Thanks to all of you that helped me guide her through her journey! Thank you GRACE!

Reply # - May 23, 2014, 08:00 AM

catdander
Posts:

Dear Steve,
I'm so so sorry to know your Venita is gone. From your posts I know you were a tremendous support for her and made her going better. May you find peace in the coming time.
With condolences,
Janine

Reply # - May 23, 2014, 08:53 AM

JimC
Posts: 2753

Steve,

I too am very sorry to hear of Venita's passing. It's clear that having you by her side was a great help and comfort to her, and I hope in the days to come you will find peace and comfort.

JimC
Forum moderator

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