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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 47 views · 3K replies

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Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
Patrick Hayes19 Patrick Hayes19 Newcomer
1 message
joined May 2007
#2941 ·
Amanda Miller69 said:While we were sitting around talking about my mom during these heavy days, my brother and I realized she actually passed away on what would have been her and Dad's 39th wedding anniversary. Honestly, I don't know if it's just a coincidence or... something more.

I am so incredibly sorry for your loss...😢
Patrick Hayes19 Patrick Hayes19 Newcomer
1 message
joined May 2007
#2942 ·
My Mommy is currently fighting breast cancer. The doctors managed to surgically remove the tumor, and she’s in the middle of chemo right now. During her last session, the medical team actually told her she doesn't need radiation—apparently, because they got the whole thing out and it hasn't spread to any lymph nodes (no metastasis), radiation isn't indicated. So, the plan moving forward is just Herceptin. But honestly, I can't help feeling this nagging sense of doubt... even if the specialists say radiation isn't necessary, wouldn't it be better to just go through with it? You know, just to be safe and cover all the bases...?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2943 ·
Sandra Parker97 said:My Mommy is fighting breast cancer. They removed the tumor surgically, and now she’s finishing up chemo. During her last chemo session, the doctors told her she doesn't need radiation because the tumor was completely excised and hasn't spread to the lymph nodes—no metastasis. She still has Herceptin treatment left. But I can't shake this feeling... even if they say radiation isn't indicated, wouldn't it be better to just go through with it... just to be safe...?

Look, radiation isn't some "just in case" procedure you run whenever you feel a bit uneasy. There has to be a concrete medical reason to justify it. It’s an incredibly invasive treatment that can cause permanent damage to the surrounding tissue. Plus, it actually increases the risk of developing other types of cancer down the road, like sarcomas or leukemia. Not to mention the potential impact on the heart muscle, given how close everything is.
The fact that your Mommy is responding so well to her current treatment is fantastic news, so please, take that win. Don't let yourself spiral over something that the specialists have already ruled out for good reason.
Everything is going to be fine.👍
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#2944 ·
Thanks again, everyone. My only solace is knowing she isn’t struggling or in pain anymore; she passed away peacefully in her sleep, just as she always wanted. If she were here, she’d probably tell us that when her time comes, she just wants to drift off quietly.
Wishing you all strength in your own battles.
Jeremy Ortiz56 Jeremy Ortiz56 Newcomer
6 messages
joined Apr 2008
#2945 ·
Kimberly Bishop91 said:In practical terms, I don't have much of a specific routine—just an apple or a banana a day, and mostly stick to steamed or boiled foods rather than anything roasted or fried. Does anyone have any dietary recommendations? Thanks in advance!

I certainly do.
First and foremost:

One really ought to research everything there is to know about how food is handled during storage and transport. You will uncover enough "interesting" facts to make anyone realize how questionable it is to be eating an apple in April when the trees back home haven't even begun to blossom. This applies to all fruit and vegetables, especially given how our local grocery chains seem to maintain a perpetual season of artificial ripening and forced maturation.

To avoid being repetitive, I would simply direct you to the health portal I write for, where you can find the specific data you are looking for.
http://www.advance.com/health/
Jeremy Ortiz56 Jeremy Ortiz56 Newcomer
6 messages
joined Apr 2008
#2946 ·
jadetinker42 said:I suppose one could ask God what exactly triggers cells to start dividing so abnormally...

It’s truly unsettling.

There isn't much point in questioning God about it; I find it unlikely we'll receive direct answers from Him that way. However, perhaps we might pray that He grants us clarity, so that we might begin to act like rational beings and rely on our own intellect—in that regard, His guidance could be quite beneficial.
One simply needs to learn how to read, maintain a basic level of literacy, and apply a modicum of sound logic to connect the facts at hand.
shadowmason6 shadowmason6 Newcomer
1 message
joined Oct 2008
#2947 ·
It honestly took everything in me to decide to start reading this thread (and for good reason, because I feel like I’d just burst into tears every five minutes seeing what so many of you are going through)... Sadly, there are just way too many pages here and I've only managed to scratch the surface. I have so much respect for Angela Wright for starting this whole thing, and seriously, mad props to all of you bravely facing these illnesses and losing people you love dearly!
Yesterday, my Mommy was diagnosed with a colon tumor. If the doctors weren't totally blowing smoke, the CT scans show that the lymph nodes and surrounding organs haven't been hit yet, so they'll schedule surgery once they get the biopsy results from tomorrow's colonoscopy.
With such a shocking diagnosis, I'm trying my hardest to focus on those relatively "good" details. Forgive me if I seem overly optimistic... I think I'd actually lose my mind if I thought any differently, so I'm just trying to keep a level head and figure out how I can actually be useful right now.
Still, there are these nagging doubts creeping in—like, were the doctors sugarcoating things just a little bit? (Maybe it would be easier to handle the bad news later if I let them?) Is a CT scan even that reliable, and could they truly see everything...?
I’m really hoping you guys might have some advice because I’m lost on what I can even do right now to make sure Mommy gets the best care possible??? A friend of mine (she's an internist at a hospital over in Canada) thinks the absolute most important thing is finding a top-tier surgeon! Right now, Mom is at a local hospital in a smaller town. Look, I have absolutely zero complaints about her current doctors, I mean it, but I can't help feeling like this particular hospital doesn't exactly have the best reputation... maybe it would be better to have the surgery done at a major medical center in Chicago instead!???
Can anyone recommend a great surgeon—or maybe just tell me if I should at least ask for a second opinion???
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#2948 ·
We went in for follow-up CT scans of the chest, abdomen, and pelvis yesterday. To say the results were a disaster would be an understatement. That damn sarcoma has come back, and it’s back in full force—appearing in three different spots.

Excerpts from the chest CT report: "On the left, there is a markedly high protrusion of the rib; along the lateral thoracic wall, a soft tissue expansive round mass measuring 3.7 x 3.3 cm is visible. Near the aortic arch and pulmonary artery, an irregularly shaped soft tissue expansive mass is also seen, and further down, anterior to the cardiac apex, there is a polycyclic expansive mass measuring 11.8 x 5.7 cm. A smaller soft tissue expansive mass is also noted on the left dorsal side in the posterior recess behind the spleen."

Excerpts from the abdomen and pelvis CT report: "Dorsal to the left, against the posterior abdominal wall behind the diaphragmatic crus, there is a larger oval-shaped soft tissue expansive mass measuring 5.6 x 5.0 cm; more anteriorly, near the diaphragmatic crus latero-aortally, another round mass is visible, almost inseparable from the larger one."

Basically, the report is a wreck. We weren't expecting this. I've been thinking about the possibility of a recurrence, but I never imagined it would happen this fast. And in three places, no less. We went straight to our specialist to hammer out a game plan:
The recommendation is third-line chemotherapy: Gemcitabine and Docetaxel. On Monday, we have to file the paperwork to get this treatment approved because, naturally, these specific drugs aren't on the standard coverage list for soft tissue sarcomas. We’re planning for a second cycle, followed by another CT scan. If this doesn't work, we move to Yondelis. Yondelis is that drug that isn't officially approved here in the States, and the monthly treatment costs roughly $11,000.

Surgery is also on the table—possibly even two separate procedures. We need to consult with the thoracic surgeon, Dr. Šantek, and most likely an abdominal surgeon as well. But we'll deal with that when the time comes.

How have we taken this news? It’s been hard. We’re back on the front lines, right in the thick of it again. We need to pull ourselves together, process this, and adjust to the new reality. *Sigh*...
Our fight continues. We’ll keep fighting for the approval of Yondelis, and we’ll keep fighting for life. This time, we’re going to need the support of friends and good people. Please, stay with us.
Zachary Booth3 Zachary Booth3 Member
27 messages
joined Dec 2008
#2949 ·
slyseal28 said:Yesterday we had a follow-up CT scan on the chest, abdomen, and pelvis. The results are a disaster. That damn cancer is back in full force... in three different spots...

I am so incredibly sorry to hear this. My heart goes out to you. Just know that you have to keep fighting, and I pray God gives you all the strength you need to get through this fight...
It breaks my heart every single time I read bad news like this. It just makes me so sad.

I don't even have the energy to write much because I'm emotionally drained and running on empty. My dad is doing poorly—really, really poorly—and I feel completely hollow and desperate. He won't wake up, his breathing is labored... it's bad. And I'm struggling, too.

Best to everyone.
Linda Wright5 Linda Wright5 Member
11 messages
joined Aug 2010
#2950 ·
slyseal28 said:We just did a follow-up CT scan on the chest, abdomen, and pelvis yesterday. The results are an absolute disaster. That damn cancer came back in full force: in three different spots.

Man, this news really hit me hard 😢...But I believe in you brave souls and I know you'll beat it again!

🙂
gentlemoose62 gentlemoose62 Active Member
105 messages
joined Jul 2008
#2951 ·
slyseal28;13853924 said:We did a follow-up CT scan on the chest, abdomen, and pelvis yesterday. And the results are a total disaster. That cancer came back in full force... in three different spots.....

Oh my goodness, slyseal28, I really didn't see this coming! It’s totally normal to feel shocked. Even when you try to mentally prepare yourself to keep the blow from hitting too hard... a recurrence like this just hurts even more than the first time...
But like you said, you've got to pull yourself together now, face it head-on, and fight even harder than before.
Thank God there's already a plan in place, and if a surgeon is involved, that's even better!
You're in great hands—the way they reacted so quickly shows that, and that speed is everything right now, you know that.
We're all right here with you whenever you need us...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2952 ·
slyseal28 said:Basically, the results are a total disaster. This wasn't what we were anticipating. I've spent a lot of time pondering the possibility of a relapse, but I truly didn't expect it to hit this quickly...

Life has a way of catching us completely off guard right when we feel most prepared. I am deeply sorry that the news is such a blow and that your difficult battle is beginning anew...

slyseal28 said:How have we processed this? It’s been incredibly hard. We find ourselves back on the front lines once again, right in the thick of it. We need to pull ourselves together, find some peace, and adapt to this reality. *Sigh*...
Our fight continues. We will keep pushing for the registration of Yondelis. We will keep fighting for life itself. This time, we are going to need the support of friends and good people. Please, stay by our side...

We are all standing right there with you, and you serve as our guide to ensure we don't just give up, but instead face things head-on and keep fighting, while providing strength to you in return...
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#2953 ·
slyseal28, I am so incredibly sorry to be reading this right now.
You guys have been so tough through all of this, and you have to keep that strength up. You’ve spent so much time cheering us all on, so now it’s our turn to rally behind you.
I don't know, this really caught me off guard...

Linda Peterson37, please don't lose heart. I truly get it—we're going through the exact same thing with my own Mommy...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2954 ·
Yesterday, our crew from the Association went to see the Pigeon to try and lift his spirits a bit, and let me tell you, the guy is a total piece of work. He really surprised us again with how stubborn he is. He said, "The bastard's back, but there's three of them now. One couldn't take me down, so now they sent three. Even if they send five, none of them will be able to touch me." (I'm censoring his choice words so I don't get banned here😉).
Legend👍
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#2955 ·
shadowmason6 said:It was a difficult decision to actually start reading through this thread (and for good reason, because I’d probably end up in tears seeing everything so many of you are going through)... Unfortunately, there are just too many pages, so I've only managed to get through a portion of it. Honestly, I have so much respect for Angela Wright for starting this thread, and for all of you who are bravely facing illnesses and the loss of your loved ones.
Yesterday, my Mommy was diagnosed with colon cancer. If the CT scans aren't misleading me, they show that the lymph nodes and surrounding organs haven't been affected yet. Surgery should be scheduled once they get the biopsy results from tomorrow's colonoscopy.
In the face of such a shocking diagnosis, I'm trying my best to focus on those relatively positive details. Forgive me if I seem overly optimistic; I think I’d lose my mind if I approached this any other way. I’m just trying to keep a cool head and figure out exactly what I can do to help during this stage.
Still, doubts creep in—did the doctors sugarcoat things a little? (Would it be easier to accept the bad news later if they did?) How reliable is a CT scan, really? Could they truly have seen everything?...
I'm hoping you might have some advice, as I'm not entirely sure what steps I can take right now to ensure Mommy gets the best possible care. A friend of mine (an internist at a hospital in Canada) believes the most critical factor is finding an exceptional surgeon. Mom is currently at a hospital in Karlovac. While I have absolutely nothing against her current medical team, I can't help but feel that a local hospital might not have the reputation we need, and perhaps it would be better to have the surgery performed at a major hospital in Chicago instead.???
Can anyone recommend a skilled surgeon—or perhaps suggest if I should at least seek a second opinion???


You could try in Chicago, specifically at the Mayo Clinic, with Dr. Majerović. He holds clinic hours on Wednesdays from 12:00 to 3:00 PM. He operated on my mother; he's an outstanding abdominal surgeon. Sadly, my mother's case was too severe, and she was simply too weak after two years of illness and chemotherapy to recover, so she passed away on Saturday. However, I believe he could save your mother; regarding my mom, he mentioned that if she had come in at the very beginning of the illness (nearly two years ago), he might have been able to save her. Wishing you all the best of luck.🙂
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#2956 ·
slyseal28 said:We had a follow-up CT scan yesterday covering the chest, abdomen, and pelvis. The results are a total disaster. That damn SS has made a comeback, and it’s showing up in full force at three different locations.

Excerpt from the chest CT report: "On the left, an extremely high rib prominence is visible, and along the lateral thoracic wall, there is a soft tissue expansive round mass measuring 3.7 x 3.3 cm. Near the aortic arch and pulmonary artery, an irregularly shaped soft tissue expansive mass is also visible, while further down and anterior to the cardiac apex, a polycyclic expansive mass measuring 11.8 x 5.7 cm is present. A smaller soft tissue expansive mass is also seen on the left dorsal side in the posterior recess behind the spleen."

Excerpt from the abdomen and pelvis CT report: "Dorsal to the left against the posterior abdominal wall behind the diaphragmatic crus, a larger oval-shaped soft tissue expansive mass measuring 5.6 x 5.0 cm is visible, with another round one located more anteriorly in the area of the diaphragmatic crus latero-aortically, almost inseparable from the existing larger mass."

Basically, the results are abysmal. We weren't expecting this. I’ve been dwelling on the idea of a recurrence, but I truly didn't expect it to hit this hard or this fast. And in three places, no less... We went straight to our professor to hammer out a treatment plan:
Third-line chemotherapy is proposed: Gemcitabine and Docetaxel. On Monday, we have to submit an application for insurance approval because, naturally, these drugs aren't standard coverage for soft tissue sarcomas. We’re planning for a second cycle, followed by another CT scan. If the therapy doesn't work, we move to Yondelis. Yondelis is that drug that isn't officially approved here in the States, and the monthly treatment costs about $11,000.

Surgery is also being planned—possibly even two separate procedures. We need to consult with a thoracic surgeon, Professor Slobodnjak, and likely an abdominal surgeon as well. But we'll deal with that when the time comes.

How have we taken this? It’s been rough. We’re back on the front lines, right in the thick of it. We need to pull ourselves together, find some peace, and adjust to this reality. *Sigh*...
Our fight continues. We will keep fighting for the approval of Yondelis. We will keep fighting for life. This time, we’re going to need the help of friends and good people. Please stay with us.


I am so incredibly sorry; it seems I'm reading nothing but bad news today. I want to send you all the strength in the world so you can push through this time too. If there is any way I can help, please let me know.
Hang in there.👍
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#2957 ·
Linda Peterson37 said:I am so incredibly sorry about this.. my heart goes out to all of you, and I just want to say please keep fighting. I hope God gives you all the strength you need to push through...
It breaks my heart every single time I read bad news; it honestly just leaves me feeling so heavy and sad.

I don't even have the energy to type much because I'm emotionally drained—just completely running on empty... my dad isn't doing well, he's doing really, really, really poorly, and I feel totally hollow and desperate. He won't wake up, his breathing is labored.. things are bad, and I am struggling quite badly myself.

Best to everyone.

Hang in there, Linda, you can do this. I know exactly what you're going through; I was right there in the thick of it myself just a week or two ago. May God grant you the strength you need.
To try and cheer you up a little: yesterday and today, there's been this commercial for Bingo playing constantly, and guess who I see in it? My mom (the lady in the black hat). It played four times yesterday and once today. I actually asked my aunt if this might be some kind of sign, or if it's trying to tell us something. So, we weren't exactly lacking motivation—we went out and bought some Bingo tickets today, so we'll see what happens this Saturday. For context, that commercial was filmed a year ago while Mom was in remission, and it hasn't aired since until now. Maybe I'm just being superstitious, or maybe... well, we'll find out during the drawing on Saturday.

Kisses and a big hug🙂
Karen Fox36 Karen Fox36 Member
19 messages
joined Oct 2007
#2958 ·
Dear Fiza, your post honestly had me laughing and crying all at once.
Things here are pretty much the same as they've been since day one—Mom is doing relatively well, so I don't have much of an update for you all. We’re heading in for an MRI in a few days, so we'll see what the actual situation looks like then. I just want to wish everyone so much luck and strength in the fight. Best regards,
Sandra Evans13 Sandra Evans13 Newcomer
9 messages
joined Apr 2008
#2959 ·
Amanda Miller69 said:Another fighter lost their battle this morning. My Mommy passed away at 7:00 AM, peacefully in her sleep.🙂🙂

Dear Fiz, please accept my sincerest and deepest condolences.
John Chase6 John Chase6 Newcomer
5 messages
joined Jun 2007
#2960 ·
Hey everyone!!
Well, I’m back after finishing up yet another round of immunotherapy and ECT over in Germany—everything went better than expected, actually, and my doctor is super happy with how I'm responding... :-)) . I'm heading off to London this Monday just because I feel like it. These last few months have been pretty "rough," so now it's finally time for me to go out and live a little... ojeeee...
Dear slyseal28, I was honestly so heartbroken to hear your latest news about the recurrence. I could try to list all the emotions swirling around in my head right now, but based on my own experience, once that initial shock wears off, you find this crazy surge of defiance—it gives you this extra grit to fight this crap. I'm keeping everything crossed for you, and I truly believe you're going to come out on top again. Sending big hugs and tons of positive vibes to everyone struggling right now.. Sincerely, Vasa din :-)

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