Support resources for families dealing with cancer and other serious illnesses

Nancy Lee said:My dad is scheduled for his second round of chemo tomorrow. He’s currently on a heavy regimen of Aloe Arborescens, honey mixed with various herbs, carrot juice, beet and celery juice, green tea, and he eats low-fat cottage cheese with flaxseed oil.
Is there anything in that list he should cut out while undergoing chemo? He has microcellular lung cancer.

Personally, I'd ditch the Aloe, the tea, and the honey during treatment.

Linda Morales66 said:Last night, around 10 p.m.—just a month and a half after receiving the official diagnosis—my mom passed away... It was only a few hours after I went to visit her and said my final goodbyes..

I am so incredibly sorry. Please accept my deepest, most sincere condolences. 😢
Listen, honey, this was just her path. When things are meant to happen that way, they happen, but at least her struggle wasn't drawn out. She’s in a much better, happier place now. You sent her off beautifully and gave her peace; I'm certain she left this world feeling at rest because of you.
I know you're absolutely crushed right now and the grief feels heavy, but please believe me when I say you will find your footing again. Life isn't going to look the same, and it never will, but it will eventually take on a new shape. For now, just know she is at peace. I'm wishing you and your family nothing but strength and peace in your hearts.

Raymond Jackson38 said:Hi everyone,

I haven't been around the forum much lately because my heart just wasn't in it. On the 24th of last month, the best man I ever knew passed away. My dad finally lost his 14-month battle with kidney cancer. No matter how much we all hoped things might take a turn for the better—even though the doctors gave us a grim outlook from the very start—it just didn't happen.

To all of you fighting this cruel disease, or those standing by someone who is, I wish you so much more luck and strength. May God be with you.

If there is anything I can offer in terms of advice based on what we went through, please don't hesitate to reach out.

Best regards,

My deepest condolences.

Linda Morales66 said:Last night, around 10 p.m.—only a month and a half after we finally got a definitive diagnosis—my mother passed away... It was just a few hours after I went to see her one last time to say goodbye..

Please accept my deepest, most sincere condolences. This is all so incredibly moving that it brought me to tears myself, and how could I not when I'm living through the exact same thing... especially since we don't even have a clear name for this disease yet...
May she rest in peace, and may her soul find comfort in heaven...

Angela Wright said:Austin Moore, your blood pressure is high enough to land you in the hospital! You’ve been so worried about Mom that you've completely neglected yourself. With numbers like those, you could face a stroke at any moment, and then your mother would outlive you. I’m appealing to your maturity and sense of responsibility—please go seek medical help immediately!

Thanks, Angela, for the genuine concern. Honestly, I saw my doctor even before Mom got sick and was prescribed various "brand names" and God knows what else, but I just can't stomach taking them, and besides, I tend to forget. We're down by the coast right now, and I didn't even pack my meds. Before her illness progressed, I had quit smoking and drinking, and everything was fine, but as her condition worsened, I just... snapped. Now, all I care about are calming medications like Normabel and things like that, but they're hard to come by here... I'm trying not to lose my mind, but I already have; I find myself lighting up or pouring a drink. I feel a bit better right now, but once night falls, it's nightmares, hangovers, and a total system breakdown because I know I'm trapped in a dead end. Nobody likes feeling stuck, and I simply cannot imagine life without my mother. I've managed to get her almost every medication and supplement possible... strangely enough, she hasn't taken anything for pain all day, though she did take some Zaldiar before bed because her hip hurts when she moves. Does anyone happen to know what Zaldiar, Tramal, Brufen, Voltaren, and Normabel are called here in Italy? Since we're close to the border, I thought maybe, but it's not exactly easy being this far from Washington, D.C. right now... Thanks again, dear, and I wish everyone health and happiness in life.

wiredcanyon39 said:Even though they said the CT results were ready, the doctor mentioned during the outpatient visit today that the lymphoma has shrunk significantly. He's saying we're looking at near-complete remission... 😁 A bit of a setback—hemoglobin is down to 7.5. We're currently waiting on a blood transfusion, but let's just hope it drops a little more... 😁

That’s great news. If those levels actually dropped, I can hardly believe there's even anything left to worry about. What exactly decreased? I haven't had a chance to go back and catch up on all the previous posts...
I just want him to make a full recovery. Thank you and best regards.

Austin Moore said:That’s honestly great news. If that number actually went down, I can barely wrap my head around the fact that even that was an issue to begin with. What specifically dropped? I haven't had a chance to scroll back through all the older posts yet.
I really just want him to get back to 100% health. Sending good vibes his way.

It's from the 3 rounds of chemo.

When can I expect the CT results to be ready over at Rebro Hospital, and where am I supposed to go to pick them up?

Reading all this really hit home—I actually teared up a bit. It was such a struggle when we weren't sure if my dad would pull through, and honestly, we’re still fighting those battles today. It’s just brutal when sickness hits out of nowhere. I truly believe that for our loved ones, having us right by their side means the entire world. So, sending nothing but strength and courage to you guys and your families.
Even when things feel pretty dark, just hang in there and stay close to them—I really think that love and care can make a massive difference. They told my dad he wasn't going to make it, but he beat the odds, and later he told my sister and me that we were his whole world—that he pushed through everything just for us.
Lately, I've been thinking that whatever life throws at us, it'll pass eventually. Everything is manageable as long as you have your health...

So, here’s the deal—I just got the CT results back. The mass went from 8x7.5 cm down to 3.9x2 cm, which sounds pretty huge, right? But my doctor is saying it's an unconfirmed complete remission? I guess I'm just trying to wrap my head around what that actually means...

wiredcanyon39 said:Here are the exact CT results: it went from 8x7.5 cm down to 3.9x2 cm. The doctor said it's an unconfirmed complete remission?

That is nearly a three-fold reduction—truly incredible. If you don't mind me asking, where was the lymphoma located, and which facility did you go to for chemotherapy? Sending my best wishes for a full recovery.🙂

Does anyone happen to have a resource or a link showing how medication names differ from one country to another? Specifically, I'm looking for the equivalent of an American drug in Italy—for instance, would Tramal or Brufen be the same thing there? Thanks.

Austin Moore said:That’s like... almost a three-fold reduction, which is honestly wild. If you don't mind me asking, where exactly was the lymphoma located, and which hospital did you guys go to for the chemo treatments? Sending nothing but good vibes your way—really hoping for a total recovery for you!🙂

So, it’s gone down by like... 87%? I mean, honestly, I’m pretty stoked about that. But hey, more importantly—and I guess this is the part that actually matters—the doctors are saying the decrease is excellent. At the end of the day, their take on it carries way more weight than my own opinion, right? 😁 So, back when I was over at Merkur Hospital in the hematology department, they were running me through this BFM protocol—or something like that, if my memory isn't totally failing me. It involved Mabthera, methotrexate, and leukovorin... I can't quite recall the rest of the lineup, honestly. And man, they did a lumbar puncture every single time. Seriously, such a nasty experience. The lymphoma was located in my abdomen. As for the actual meds, though... 🤷 Since we’re talking about pain meds, I guess it might be best to just head over to the local pharmacy and ask them directly about what's available for the pain. Maybe they can point you in a better direction.

Angela Wright said:I guess I'd skip the aloe, tea, and honey while going through therapy. Maybe just better to be safe.

So, I actually asked his doctor about this yesterday, and she claims none of that stuff should interfere with the chemo. I guess.😕 So, he had his second round of chemo yesterday, and he’s feeling pretty rough today. He isn't actually throwing up or anything, just dealing with some constant nausea. I guess that's just how it goes.
Yesterday, right before he started his chemo, the doctor mentioned that the results were looking better—basically, that the first round actually worked.😍
By the way, is it actually normal for him to be seeing a pulmonologist instead of an oncologist? He’s getting treated over at Merkur Hospital.

Nancy Lee said:Well, I checked with his doctor yesterday and she mentioned none of this stuff should interfere with the chemo.😕 He actually had his second round yesterday, and he’s feeling a bit weak today. No vomiting, just some nausea.
Yesterday, right before the session, the doctor told us his labs were looking better—basically, the first round of chemo worked.😍
By the way, is it normal for a pulmonologist to be leading the charge instead of an oncologist? He's being treated over at Jordanovac.

Some doctors swear by taking nothing at all, while others say it doesn't matter... honestly, who knows? Personally, I'm definitely opting for the supplements. And yeah, here in the US, lung cancer cases are often handled by pulmonologists rather than oncologists, which seems totally backwards to me, but that's just how the system works around here.

Angela Wright said:Some doctors think it's better to take nothing at all, while others say it doesn't really matter... I guess you can never tell. Personally, I'm leaning toward taking something. And yeah, here in the States, lung cancer is handled by pulmonologists, which seems pretty illogical to me, but that's just how things work around here.

It feels completely illogical to me too. When I asked my doctor about it, she just told me the oncologist decides on the therapy and the pulmonologist handles everything else. Makes no sense, I guess.

Hello everyone, I’m back again. As I mentioned in my last post, the tumor was consistently shrinking on previous CT scans, and my father-in-law was feeling absolutely wonderful.
Now, they have switched his treatment protocol to Taxol and Carboplatin.
We just received the first results after three cycles of this new regimen, and from what I can see, based on the dimensions alone, the tumor has actually grown.😢
I am going to transcribe everything from the report here, so if anyone is capable of explaining exactly what 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 mass is observed in the apical and posterior segments of the right upper lobe, continuous with the mediastinal and costal pleura. This mass features marginal, irregularly shaped calcifications and shows progression compared to previous CT scans, measuring AP 78mm x LL 85mm x KK 97mm, with no evident rib erosion.

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

Thank you in advance!

I should also point out that the previous treatments (Ifosfamide and Epirubicin chemo) were highly successful, crushing the tumor from its initial size of 133mm x 127mm x 123mm down to 54mm x 80mm x 68mm. Following this new type of therapy—which seems to be less aggressive—the tumor has expanded 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.

Diagnosis:
Left lung squamous cell carcinoma
Status post right lung resection
Cytology in progress (1st cycle)

The right lung was removed; chemo and radiation are finished. Recovery is slow.
Currently dealing with some breathing issues and a racing heart.
We just got a specialist report, but three different doctors are interpreting it in completely different ways.

If there are any experts here, I’d appreciate your take on this report.

Thoracic CT scan
CT scans show the state following the right pneumonectomy; the right hemithorax is narrowed with a shift of mediastinal structures toward the right, alongside visible areas of postoperative metal clips. The right hemithorax is entirely filled with an area of higher density fluid that appears encapsulated. In the mediastinum, within the aortopulmonary window, a few lymph nodes are noted, the largest being 10mm, with paratracheal and right paracaval nodes measuring 15mm and 9mm at the level of the aortic arch exit vessels, measuring 10mm. On bone window CT scans, a zone of bone condensation measuring up to 8mm is visible in the area of the right scapula.

Thanks in advance for any input.
To everyone else navigating something similar to my family: I truly hope God watches over you and guides you through successful treatment for this heavy burden. Surround your loved ones with smiles, love, and light. Don't let the dark thoughts or worries take hold. I know it sounds easier said than done, but that's what family is for—to hold things together when they feel like they're falling apart.

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—she suffered from fluid buildup because her kidneys failed. They say she was lucky because she only had a few days of pain. I haven't even fully processed that she is gone, and now a new bolt of lightning has struck me. Since July 13th, my mother has been treated for pneumonia, then an inflammation of the gallbladder, and finally, an ultrasound revealed gallbladder carcinoma with metastases in the liver. Everything else seems clear, at least it appears so, but they are saying there is no hope. They are giving her a few months. For two days, I just wailed a little, trying to gather my strength and information. I went to Merkur Hospital, and they said perhaps removal might be possible, but first, she needs to recover from the complications likely caused by that unsuccessful initial surgery. I am begging for 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 my mother beat this. Please, does anyone have any experience with this specific type? She is doing okay for now; she actually has too much of an appetite, eating out of grief for my father and staying brave for me. Believe me, I am screaming inside; my entire world is falling apart...🙂

Greetings. I am truly sorry that you are going through this, as I find myself in the exact same situation. My mother has been fighting gallbladder cancer for a year now, which at the time of discovery had already spread to the liver and several lymph nodes in the retroperitoneum. Following surgery, she underwent her first line of chemotherapy consisting of Cisplatin and Vepesid, totaling eight treatments. At the start of therapy, she had two metastases in the liver and one in the local lymph nodes (this was recorded a month after the surgery where everything was cleared; I mention this only to illustrate how aggressive this tumor is). In May of this year, after those eight treatments, she was clear, but the CT scan in August revealed two new metastases in the liver and again in those lymph nodes. She is now receiving a second line of therapy—5FU, Dtic, and epirubicin—even though it isn't the standard for her specific tumor type, because she wouldn't be able to tolerate anything stronger (we are dealing with a very rare, poorly differentiated neuroendocrine carcinoma). She never experienced any symptoms regarding the tumor itself, and she is currently in good condition. Before the diagnosis, there were no symptoms, except for one day when some moderate pain appeared on the right side of her back along with tightness around her waist. They originally diagnosed it as gallstones, and it was only when they performed the surgery that the true diagnosis was established. You mentioned that your mother was being treated for pneumonia; I am wondering how long that lasted before this diagnosis was made? My mother had respiratory issues a few months prior to this and was treated for bronchitis, while her sedimentation rate was 70, yet no one paid any attention to it. It turned out that was the sign of the underlying problem. I would appreciate it if you could write back about everything that is happening, and I will gladly share anything you need to know.

Could someone please explain what "cervix displaced under the symphysis" actually means? Is it possible that a private doctor might have shifted it during an exam? This wasn't mentioned in her two previous reports, and everything happened within just a three-month window. After a manual pelvic exam—which was incredibly painful for my mom—and some internal pressure, she’s been in pain for ten days straight. She’s never experienced anything like this before the exam, so I'm wondering if it's even possible for the cervix to be pushed under the symphysis during a procedure like that. Thanks for any insight, everyone!