Support resources for families dealing with cancer and other serious illnesses

I was also wondering what might be more effective for managing pain from bone tumors or sarcomas—taking a dip in cold water (like the ocean), swimming in an indoor pool with warm saltwater, or soaking in very warm water? What does a sarcoma react to more negatively: heat or cold? Since we aren't even certain if it's a sarcoma yet, I figure whatever those tumors dislike is what I should be doing... honestly, I feel like I'm losing my mind over all of this.🙂

Austin Moore said:I was also wondering—what’s actually better for managing pain when dealing with bone tumors or sarcomas? Like, would a dip in cold water (maybe the ocean?) be better, or should I go with an indoor pool using warm seawater, or even just soaking in really hot water? And does a sarcoma actually react more negatively to heat or cold? I figure if there's something that sarcomas and other tumors (since we don't officially know if it's a sarcoma yet) specifically hate, then maybe that's the thing I should be doing... Ugh, I feel like I'm going to lose my mind.🙂

I can only tell you from my own experience—when my son was dealing with abdominal lymphoma, just using the heat from a hair dryer or taking warm baths acted like a natural anesthetic for him, especially in situations similar to what you're going through right now. 🤷

I honestly don't even know what to say or how to process this. Things were finally looking up—Dad's back home, he's finished his radiation sessions, and he's actually starting to eat and drink again, you know, getting his strength back. But then! I call Mom today and she drops the bombshell that Dad has started smoking again. Like, seriously? He literally has lung cancer because of those damn cigarettes—thank God it was caught early and is likely totally curable—and he finishes radiation, stays clean for a week, and then goes right back to it. I’m just in shock. When I get home later, we’re all going to have a massive, serious sit-down. We've survived so many scares and we are just so incredibly happy that he's still here with us—like, beyond words, feeling like everything is finally okay—and now he's just acting like he's working against himself. It feels so irresponsible and reckless. I am beyond frustrated. 🙂

My dad is driving me absolutely insane with how anxious he gets.🙂

So, now that Dad's back home, we finally got his discharge papers and the vascular surgeon's report. Looks like they did an angiography—it says there’s a 2.5x2.5 aortic aneurysm, plus the common iliac arteries are dilated, and apparently, the internal ones are totally blocked. On top of that, he's got some patchy blockages in his right leg—tibial, superficial femoral, and deep femoral areas.
And they just sent him home like that? Isn't that basically an emergency? I guess since he's on Marevan, that'll help break up the clots? Or maybe they're hoping those clots in his right leg can be cleared out or dissolved somehow?
What’s really messing with me is that part about the internal iliacs being completely clogged... doesn't that mean all the organs in the pelvic area aren't getting enough blood?? I don't get how he could be sitting at home like this. Man, after everything else he's been through, this is just more stress. I'm honestly terrified he might lose his right leg or, God forbid, his life because of those internal iliac issues 😢.

Chloe Gray5 said:Since my dad was discharged, we got the paperwork from the vascular surgeon. Apparently, they did an angiography, and it shows he has a 2.5x2.5 aortic aneurysm. On top of that, his common iliac arteries are dilated, and it looks like the internal ones are completely blocked. He also has localized issues in his right leg involving the tibial, superficial femoral, and profunda arteries.
And they just sent him home like this? Isn't that an emergency? I mean, I assume since he's on Marivarin, that's supposed to help break up the clots? Or regarding those clots in his right leg—can they actually be removed or dissolved somehow?
What really scares me is that the internal iliacs are totally blocked. Doesn't that mean all the organs in the pelvic area aren't getting blood flow?? I don't get how he could be at home in this state. Man. After everything else he’s been through, now this. I'm terrified he might lose his right leg or, God forbid, his life because of those internal iliacs.😢.

If they tried touching the same area again, he probably wouldn't make it. My dad definitely isn't in any condition to undergo another surgery, like an aortic aneurysm repair, which is incredibly heavy and risky. Look, they patched him up, roughly speaking, and now he just has to push through as long as he can. You have to be realistic and accept that he is very sick now and he's never going to be the man he used to be.

wiredcanyon39 said:Based on my own experience, I can tell you that when my son had abdominal lymphoma, using a hair dryer on warm settings or taking warm baths worked as a sort of anesthetic, much like what you're dealing with now 🤷

Thanks for the info.😛

My uncle starts chemotherapy the day after tomorrow.
To boost his immunity, we’re planning to make a juice blend of beet, orange, apple, carrot, and honey—following a recipe that calls for one of each. Now, how much should he be drinking daily? Just one serving a day, or what? Also, can we prep enough for two days and leave it at room temperature? He can't handle the cold right now, given the lung cancer 😢.
We also picked up some Taheeb tea, which suggests mixing one spoonful per 1.2 liters of water. Is drinking that every single day overkill? And can it be served cold?
Is this combo enough for his immune system? We read somewhere that you shouldn't overdo the vitamins—too many can actually backfire—but you can't underdo them either.
The plan was to have him drink the juice in the morning, then switch to the tea in the afternoon and evening.

Thanks much 🙂

Chloe Gray5 said:Since Dad was discharged to go home, we received his discharge papers along with the vascular surgeon's findings—apparently, an angiography was performed. It states there is a 2.5x2.5 aortic aneurysm, and the common iliac arteries are dilated, with what seems to be blockages in the internal iliacs too; plus, in his right leg, there are localized issues in the tibial, superficial femoral, and deep femoral arteries.
And they just sent him home like that? Isn't that considered an emergency? I suppose since he's taking Marivarin, that will help prevent blood clots from forming? Or regarding those localized clots in his right leg—can they somehow be removed or dissolved?
What really worries me is the mention that the internal iliacs are completely blocked... doesn't that mean the organs in the pelvic region aren't getting any blood flow?? I just don't understand how he could be at home in this state. Oh dear. After everything else he's been through, now this. I am genuinely terrified he might lose his right leg or, God forbid, his life because of those internal iliac issues😢.

The aneurysmal dilation of the abdominal aorta being described definitely isn't something requiring surgery (not even for patients who are otherwise perfectly fit and healthy); rather, it's something to monitor, as it is so subtle that it's hard to even call it an aneurysm.

If the origins of the internal iliac arteries are indeed blocked, the pelvic organs still receive blood via collateral circulation—essentially, natural bypasses that develop when certain arteries become obstructed. Nothing in his pelvic organs should be seriously threatened (though he might experience issues such as impotence, for instance)...

These localized arterial blockages in the right leg are actually very common in smokers, diabetics, and similar cases—in those instances, it's chronic, meaning it developed over a long period of time.
I highly doubt this is a fresh embolism (though, admittedly, I don't know the full medical history).
If the limb isn't acutely compromised at this stage, there is certainly no need for immediate intervention; once he recovers, if there is any limitation in his walking range, there is the possibility of endovascular therapy for those blockages (meaning a solution without open surgery), depending, of course, on the appearance of the arteries.

wanderingcobra76 said:That abdominal aortic aneurysm they're mentioning? Honestly, it’s definitely not surgery territory—not even for someone who's super fit and healthy—it's more of a "keep an eye on it" situation because it's so minor you could barely call it an aneurysm.

If those internal iliac arteries are actually blocked, the small pelvic organs just get their blood from collateral circulation—basically, the body's built-in detour system that kicks in when arteries get clogged up. It shouldn't seriously threaten his pelvic organs, though he might run into some issues like impotence...

Those localized blockages in the right leg are actually pretty common for smokers or people with diabetes—it's usually chronic stuff that builds up over a long time.
I really doubt this is a fresh embolism (though I don't know his full medical history).
If the limb isn't in immediate danger right now, there's zero need to jump into anything—and once he recovers, if he's having trouble walking, they can look into endovascular therapy to fix the blockages (which means no major surgery), depending on how the arteries look.

Mom says it's not nearly as scary as I thought—the vascular surgeon said he wouldn't touch it yet, but maybe later once Dad is feeling better, he can go in locally and clear out the clots one by one, if I understood him right...

He likely meant an endovascular approach—since that’s typically done under local anesthesia—but it isn't actually performed by a surgeon, but rather an interventional radiologist (though patients usually stay in the vascular surgery wing). Essentially, they go through an artery in the groin—which is where the anesthetic is administered—using a wire to reach the blocked areas in the arteries; from there, they attempt to clear the blockage and then dilate the area with a balloon, adding a stent if necessary.

You guys really helped me out—I was totally spiraling there. After going through those two brutal amputation surgeries, finding out about the extra blockages right after radiation just sent my mind straight to the worst-case scenario.

So, the doctors told me there should be a 2-3 week gap between treatments, but today marks day 23... I guess, is that going to be an issue?

Sophia Davis4 said:Angela Wright, please, I see you have so much experience and life wisdom, help me....
Only a month ago, all of this was happening to someone else; today, it is happening to me, and twice over.
On July 24th, I lost my aunt; she passed away within ten days of being diagnosed with primary liver carcinoma. She wasn't even aware of what was happening to her—she died overnight. They told me she just fell asleep, essentially; her kidneys failed and she suffered from fluid buildup. They say she was lucky because she only had a few days of pain. I haven't even processed that she is gone before lightning strikes me again. Since July 13th, my mother has been treated for pneumonia, then an infection, and finally, an ultrasound revealed gallbladder inflammation. They performed surgery to open and close it. It turns out to be carcinoma with metastases in the liver. Everything else seems clear, or so it appears, but they say there is no hope for her. They are giving her a few months to live. For two days, I just wailed, trying to gather some strength and information. We went to Merkur Hospital, where they said perhaps removal might be possible, but first, she needs to recover from the infection she likely contracted following that unsuccessful surgery. Please, I need help. What awaits us? I am not ready to say goodbye to both parents in such a short span of time. I must, and I want to, give everything I have to help Mom fight this. Please, does anyone have any experience with this type of cancer? She is doing okay for now; she has an appetite—actually, too much—she stays strong for Dad, and she stays brave for me. Believe me, I am screaming inside; my entire world is falling apart...🙂

Greetings everyone. I am new to this forum, though I have been fighting for my mother's life for quite some time now.
I am responding to you because this specific type of tumor is incredibly rare, and you are the first person I have encountered discussing it here.
I am from a small town near Jacksonville, and last August, my mother was diagnosed in the exact same manner (during surgery for gallstones) with a gallbladder tumor that had metastasized to the liver and the lymph nodes in the retroperitoneum. Now, while my mother was incredibly lucky to have been operated on by the best surgeon in the country for these types of tumors, that is a whole other story—a cinematic saga of how she even made it to the operating room. He cleared everything during the surgery, but my mother unfortunately suffered two severe postoperative complications. First, she developed enterocolitis from the antibiotics, followed by a pulmonary embolism. She survived it all, and two months after the surgery, she began chemotherapy, which she couldn't start any sooner. When she started chemo, she already had two metastases in the liver and one in the lymph nodes (in just two months). She completed eight rounds of chemotherapy, and by May of this year, her scans were clear. Unfortunately, this August, we are facing the same situation: three metastases in the same location once again. She is currently starting her second line of chemotherapy. What I particularly want to emphasize is that my mother was already a heart patient and 80% disabled due to an old car accident involving severe spinal injuries. And on top of all that, she gets this. When she was operated on, the prognosis was less than a year, even with successful chemotherapy; they didn't even believe she would survive the first round (she received it only ten days after finishing treatment for the pulmonary embolism). I didn't have much faith either, yet here she is, right beside me. Throughout the illness, Mom has felt remarkably good regarding the tumor itself; she could eat, she looked well, and she had no pain whatsoever. It is the same now; if someone didn't know, they wouldn't believe she had gone through any of this. Have hope; miracles do happen. I realize this is just extending her life, but as I said, we wouldn't have dared to wish for this in our wildest dreams. After the first three rounds of chemo last year, the tumor shrank by nearly 90%, and one metastasis disappeared entirely. Mom tolerated the extremely aggressive therapy exceptionally well. As for the type of tumor, besides gallbladder tumors being extremely rare, my mother "hit" an even rarer variety: a poorly differentiated neuroendocrine carcinoma—the "grand prize" among tumors, the absolute worst. Just do not give up until the very end. My head was in total confusion, I survived terrible shocks, and now I am somehow pushing forward; I am a bit more stable, but it still hurts deeply whenever I think about it. Even here, medical conditions can be difficult, though my mother was fortunate enough to encounter an Oncologist who is a true specialist in these specific tumors, and by pure chance, we found her.
I would appreciate hearing how things are progressing on your end, and I will be keeping your mother in my prayers.

Hello everyone, I'm back again. As I mentioned in my previous post, the tumor was consistently shrinking on the earlier CT scans, and my husband was feeling absolutely wonderful.
Now, they have switched up his treatment plan to Taxol and Carboplatin.
We just received the first results after three cycles of this new regimen, and from what I can gather by looking at the dimensions, the tumor has actually grown.
I am going to transcribe the full report here, so if anyone is capable of explaining exactly what all of this means, I would be incredibly grateful.

CHEST CT

On follow-up non-contrast and post-contrast scans through the thoracic region, an extensive, partially necrotic, expansive solid mass is observed in the apical and posterior segments of the right upper lobe, continuous with the mediastinal and costal pleura. This mass features marginally visible irregular calcifications and shows progression compared to previous CT scans, measuring AP 78 x LL 85 x KK 97 mm, without evident rib erosion.

In the anterior segment of the right upper lobe and the right middle lobe, the previously described plate-like atelectasis persists.
Discrete band-like scarring is noted in the basal aspects of the right middle and lower lobes.
No pleural effusion is present.
Within the mediastinal fat, there are retrocaval, left paraaortic, and subcarinal lymph nodes measuring between 12mm and 17mm.
Right hilar pulmonary lymph nodes measure 13mm.
On scans through the abdominal region, the liver, gallbladder, spleen, adrenal glands, and kidneys appear normal.
The pancreas shows signs of initial fatty infiltration.
No pathologically enlarged lymph nodes are visible in the retroperitoneum.
No focal osteolytic lesions are seen on the visualized bone structures.

Thank you in advance!

I should also mention that the previous therapies (Chemotherapy with Ifosfamide and Epirubicin) were remarkably successful, crushing the tumor from its original size of 133mm x 127mm x 123mm down to 54mm x 80mm x 68mm. After starting this new type of therapy—which seems to be less aggressive—the tumor has increased over three months from those smaller dimensions to the 78mm x 85mm x 97mm mentioned above. We are heading to the tumor board consultation in a few days to see what they have to say, though they are always notoriously tight-lipped with their information.

As you’ve already observed, the tumor has grown again—not by a massive amount, perhaps, but certainly enough to suggest that the current chemotherapy isn't hitting the mark.
The metastases in the mediastinal lymph nodes (around the heart and the large bronchi) look roughly the same as before—if one goes by the written report, though comparing the actual scans is always much easier—which is a positive sign since they haven't significantly increased or spread into many new areas.
It is also encouraging that we aren't seeing any metastasis in the bones, adrenal glands, or the liver.
The rest of the findings remain unchanged from the previous reports; specifically, those scarring changes and atelectasis caused by the tumor's growth are permanent—those won't be reversed by therapy, regardless.

You will have to wait and see what the medical board decides, but they will likely pivot to a different treatment plan given that this one clearly hasn't been successful.

Please do keep a very close eye on his mental state, any headaches, or potential weakness in a single arm or leg—things like dropping items, stumbling, or difficulty articulating words—because lung tumors do have a tendency to metastasize to the brain.

We just got back from the tumor board meeting, and the consensus was pretty clear: they aren't satisfied with how things are progressing this time around. They didn't offer much in the way of a detailed breakdown, but they have decided to pivot the treatment plan and want to attempt radiation therapy. Up until this point, my father-in-law has been strictly on a chemotherapy regimen. Honestly, he feels fine—he isn't reporting any pain or any significant issues at all. Those enlarged lymph nodes have been there since the very beginning, and their size hasn't really shifted much. We’ll just have to wait and see how this next phase unfolds. I will say, though, that following this latest update, he seems to be struggling a bit more mentally.
Thanks for the response, wanderingcobra76.

I know the lymph nodes are staying the same size—I actually went digging through my old posts to find my previous CT scan results just so I could make a proper comparison.
That’s exactly why I feel like things aren't quite as dire as they seem—while the tumor mass itself has unfortunately grown, the metastatic disease hasn't spread any further.
If new metastases had popped up, then we would be looking at a much more serious situation, wouldn't we?
I am really hoping that the radiation therapy does the trick. 🙂

wiredcanyon39 said:The doctors mentioned there should be a 2-3 week gap between treatments, but today is actually day 23. Is that going to be an issue?

Does anyone know? It's actually day 25 today.

restlessdriver72 said:My uncle starts chemo the day after tomorrow.
To help his immune system, we're planning to make a juice out of beets, oranges, apples, carrots, and honey—the recipe calls for one of each. Now, how much of this should he actually be drinking daily—just one serving a day, or more? Also, can we prep enough for two days and just leave it at room temperature? It’s not exactly warm enough for him right now, given the lung cancer 😢 situation.
We also picked up some Taheeb tea, which says to steep one spoonful in about 40 ounces of water. Is drinking that every single day too much? And can you drink that tea cold?
Is this combo enough for the immune system? We read somewhere that you shouldn't overdo the vitamins because they can sometimes backfire, but you don't want too little either.
The plan was for him to have the juice in the morning, then the tea in the afternoon and evening.

Thanks so much 🙂

That doesn't seem like much. If he can manage to sip through a full dose throughout the day, that's great. But... grated apples left at room temperature?! I'm honestly not sure even a perfectly healthy person should risk that. I'd strongly suggest keeping it in the fridge, and maybe tossing some lemon into the mix too. My husband used a similar routine, and his blood work looked absolutely perfect before every chemo session. Good luck.