Support resources for families dealing with cancer and other serious illnesses

Angela Wright, THANK YOU SO MUCH for getting back to me. It honestly means the world to receive advice during these heavy, initial moments while we’re still trying to find our footing and make sense of everything. It’s especially comforting to hear from people who have actually walked this path and gathered so much wisdom along the way.
I’ve been reading up on how many people swear by Noni juice for boosting the immune system, and I even saw some info about it at the local pharmacy, but I’m really hesitant about mixing supplements until I can confirm it’s actually safe.
As I mentioned earlier, my dad has been sticking to herbal teas and juices following the Breuss method alongside a very healthy diet—he’s completely overhauled the way he eats compared to how he used to. Because of that, I’m wondering if Noni juice would be a good addition, or if it might clash with his current regimen? I do know it’s generally okay to take with antibiotics, and even before or during surgery and chemotherapy.
Thank you all so much! Hang in there, everyone. When I first heard the diagnosis, I just broke down and cried, but I quickly realized that if I did that, I was basically telling my dad "we aren't going to win this." I had to snap out of it and realize that we need to face this illness head-on.

Nancy Hernandez43 said:First off, there’s really no magic formula for chemo that guarantees zero side effects. There’s this book called "A Guide Through Chemotherapy" that has some solid advice. I haven't read more than a few pages myself, but from what I saw, it seems legit.

No matter how rough things get, staying active and eating well—basically just trying to live a normal life without overthinking everything—is key. It’s tough to believe everything will go perfectly while you're simultaneously wrestling with fear about what's coming, but obsessing over side effects makes it even harder.

With all the upcoming chaos and the stress that comes with chemo, please don't forget about yourself and your pregnancy. Even if you're usually an emotional person, you're going to need to find the strength to keep those feelings from taking over, because letting them spiral will mostly just hurt you.

Sending you so much strength. I'm sure as he goes through treatment, you'll both figure out the best ways to support him. Hang in there!

Thanks for the reply. My mother-in-law is the one handling his care since we don't live together; I just wanted to help prepare her and my husband a bit. My father-in-law is actually doing okay. His surgeries were brutal, but not because of the cancer itself—it was because they missed something during his colonoscopy and ended up tearing his bowel. They had to clean him out twice before they finally caught the carcinoma on the third try. He just got out of the hospital two months ago, managed to gain back about 15 pounds, and now they've told us he needs to start chemo. It looks like they were just waiting for him to recover a bit. I really think he'll be fine, though; he's already survived so much during those four months in the hospital.

Susan Gonzalez4 said:Thanks for getting back to me... my mother-in-law will be taking the lead on his care since we don't live under the same roof, though I wanted to prepare both her and my better half for what's coming. My father-in-law is doing okay, all things considered; the surgeries were quite grueling, though not necessarily because of the cancer itself, but rather because they failed to notice during his colonoscopy that his bowel had been perforated... he had to undergo cleaning twice before they finally managed to remove the carcinoma on the third attempt. He was discharged from the hospital about two months ago, regained some weight—about 30 pounds—and now they’ve informed us it’s time for chemotherapy. It seems they were simply waiting for him to stabilize first... I truly believe he'll pull through, given everything he endured during those four months in the hospital...

I can't offer much direct advice since I wasn't involved in my mother's treatment, but I can share how my father approached everything, as he was always fiercely independent when searching for answers... It is absolutely vital that the body remains strong and prepared for the fight ahead. While it's good that your father-in-law has regained some weight, nutrition is paramount. In our house, we made sure everything was freshly prepared—lots of fruits and vegetables, a banana every morning, and fresh juices made daily. To support the immune system, we relied on natural propolis capsules. We also made sure that even if nothing else worked, a trip to the ocean would save us, as my mother loved to swim... No matter how heavy or stressful things became, I only heard recently that she experienced nausea during one round of therapy, but fortunately, it lasted only a single day. She used to have such a frail constitution; we were constantly terrified that every subsequent treatment would leave her weaker. But looking at her today, you wouldn't see that exhausted, sickly woman with the hollow gaze... Today, she is once again that "old self," fighting through the fear with a laugh...

The fight is what matters!👍

Melissa Stewart said:Angela Wright, THANK YOU SO MUCH for responding. It’s honestly such a relief to get advice during these initial, heavy moments while we're still trying to figure everything out. It means even more coming from people who have actually walked this path and gathered real experience.
I’ve read that a lot of people drink Noni juice to boost their immune systems. I saw it mentioned in pharmacy brochures too, but I’m hesitant about mixing supplements until I know if it’s safe.
Like I mentioned before, my dad is drinking herbal teas and juices following the Breuss regimen along with a healthy diet (he’s completely overhauled his eating habits). I’m wondering if Noni juice would fit well with that routine, or if it clashes? I know it can be taken alongside antibiotics, before or during surgery, or even during chemo.
Thanks, everyone! Hang in there! When I first heard the diagnosis, all I could do was cry—but then I quickly realized that acting like that just makes my dad feel like we aren't going to make it. I knew we had to step up and face this illness head-on.

My mom drank that "authentic" Tahitian Noni right up until the very end. Honestly, toward the end, her liver tests were a mess—I think it was a combination of the chemo and the damage from old gallstones and high doses of cortisone. Right around the time we realized her liver was failing, I heard that Noni can actually be pretty hard on the liver. Whether that’s absolute truth or not, I can't say for sure🤷. What I *do* know is that Noni isn't worth the price tag. That is my definitive takeaway and my firm belief.
Stick to boosting your immunity with plants that actually grow in our own backyard. Genetically speaking, we’re built for the local stuff.
I always recommend natural propolis to everyone. In my opinion, it was solely thanks to that which my mother defied every prognosis and passed away without infections, bedsores, or any of the other complications that usually take down someone who is completely immobile. This propolis is sourced locally, patented by one of our own experts, and has been tested at the Ruđer Institute.

Angela Wright said:My mom drank Noni—the "authentic" Tahitian stuff—right up until the end. Honestly, toward the finish line, her liver tests were a mess. I mean, maybe it was the chemo, or maybe it was the damage from old gallstones combined with heavy doses of cortisone, but just as we realized her liver was failing, I heard that Noni can be pretty rough on the liver. Truth or not, I don't know🤷. What I do know is that Noni isn't worth the price tag. That’s my final word on it, and I'm pretty set on it.
Stick to immune boosters from plants that actually grow around here. We're genetically wired for them, I guess.
I always recommend natural propolis. In my opinion, it's thanks to that alone that my mom beat all the odds; she passed away without any infections, bedsores, or that other stuff that usually finishes off someone who's completely immobile. This propolis is sourced locally, patented by one of our own, and tested at the Ruđer Institute.

Hey Angela Wright! It sounds like you really know your stuff. This topic was definitely needed. I found out today that a friend of mine (she's 31) has Hodgkin's lymphoma. She didn't have any symptoms at all, until about a month ago when the lymph nodes in her neck swelled up terrifyingly. The doctors at the hospital were acting surprised until they removed a node and sent it off to Washington, D.C. Most of the results came back fine, but that last one was inconclusive. Then she went to Washington, D.C. for a PET scan, and they discovered it's Hodgkin's, which has spread beyond the neck nodes to the top of her lungs and a vertebra. They think it's been growing in her for a long time. I'm in total shock, honestly. I don't even know how to talk to her. I want to help, but I have no clue what the chances are with a diagnosis like this. Thanks in advance for any advice!

nimblestag7 said:Does anyone happen to have information or know someone who has used Gemzar? It’s listed as one of the medications for cancer treatment. I’m a total amateur when it comes to all of this. I’m curious about what kind of reactions people have to therapy with that specific drug, though from what I’ve been reading online, it seems to be quite an individual experience. Perhaps you could share some of your own experiences...
Thanks,
Worried😕😕😕

It really does vary from person to person. My husband went through four doses combined with cisplatin, and he didn't face any overwhelming side effects. He did deal with some mild nausea, and after about twenty days, his hair started thinning out—so we found it best to just shave it all off as soon as possible. We also focused on eating very light meals; the doctors actually recommended sticking to things like cabbage and carrots. Along with the Gemzar, he was also prescribed an anti-nausea medication, I believe it was Zofran.

"SILVA PAVOŠEVIĆ, A NURSE FROM A SMALL TOWN, USA, DIED WAITING FOR THE CLINICAL TRIALS COMMITTEE OF A US HOSPITAL TO APPROVE A LIFE-SAVING THERAPY
She passed away while waiting for approval on an expensive medication—interferon

SMALL TOWN, USA - At just 44 years old, Silva Pavošević, a nurse from a small town, USA, succumbed to complications from malignant melanoma this past Thursday. She spent her final days stuck in bureaucratic limbo, waiting for a decision from the Clinical trials committee of a US hospital regarding whether they would approve or deny her access to life-saving treatment via an expensive interferon drug. As she herself lamented less than a month ago, what tormented her more than the disease itself was the cold attitude of the oncologists; they told her bluntly that there was no hope left for her and that she wouldn't be getting the medication. They wouldn't even authorize the prescription that would have allowed her to purchase the drugs herself.
Whether interferon truly could have saved her life remains a question for future analysis, but her family and friends are certain that if she had received it, she would still be here with them today.
"She died from suffocation after the lymph nodes in her neck became inflamed. The doctors at the hospital told us she might have survived if she’d had the standard 25,000 defense cells that a healthy person uses to fight such situations. But she only had 1,500—most likely because she hadn't started the interferon therapy. So, regardless of whatever excuses the doctors try to pull later, I know she's gone because they refused to give her the medicine she needed. And that is something I will never forget or forgive those responsible for," said Zvonko Pavošević, husband of Silva, who spent twenty years of her life providing medical care to anyone in need.
Dr. Dinko Burić, a local official who helped Silva Pavošević raise the funds for her first dose of interferon, also believes the medication could have saved or at least extended her life.
"The saddest part is that we were actually able to help her. The money was right there, but they wouldn't authorize the prescription she needed to buy the meds. I truly believe Silva would still be alive today, fighting for her health, if the doctors had given her hope by approving the treatment. Every doctor should try to help a patient until the very end, at least by offering hope. When patients see that you're trying to help, it gives them strength to fight the illness. I think Silva died because they denied her that hope. I'll never forget our last conversation and her words: 'They cut my life short,'" says Dr. Burić.

William Cruz said:Hey, Angela Wright! It sounds like you really know your stuff. This thread was honestly much needed. I just found out today that a friend of mine (she's 31) has Hodgkin's lymphoma. She didn't have any symptoms at all until her neck swelled up terrifyingly about a month ago—just massive lymph nodes. The doctors at the hospital were actually baffled until they biopsied a node and sent it off to Washington, D.C. Most of the results came back fine, but that last one was inconclusive. She went to Washington, D.C. for a PET scan, and that's when they discovered it's Hodgkin's, and it hasn't just hit her neck; it's spread to the top of her lungs and a vertebra. They suspect it's been growing inside her for a long time. I'm in total shock and honestly don't even know how to approach her. I want to help, but I have no clue what the odds are with a diagnosis like this. Thanks in advance for any advice!

Check out the patient advocacy group forum that focuses on Hodgkin's. There are a few women there living with Hodgkin's who write about their experiences.
Look, here is the bottom line: Hodgkin's is a malignant disease, but it's one that is treated quite successfully these days. If I recall correctly, the cure rate is somewhere around 90%. I remember a case involving a girl named Frednica who got sick when she was 16; her symptoms were identical, even with metastases, though not in the spine. Fast forward to today: she's 29 and became a happy mom to a little boy three months ago.
Always stay positive when you talk to her. She has a grueling road ahead of her, and she’s going to need your unwavering support to get through it.

Steven Edwards44 said:"SILVA PAVOŠEVIĆ, A NURSE FROM A SMALL TOWN, USA, DIED WAITING FOR APPROVAL OF A LIFE-SAVING THERAPY FROM THE CLINICAL TRIALS COMMITTEE OF A US HOSPITAL
She passed away while waiting for approval for an expensive medication—interferon.

SMALL TOWN, USA — At just 44 years old, Silva Pavošević, a nurse from a small town in the US, passed away this Thursday due to complications from malignant melanoma. She spent her final days caught in a bureaucratic limbo, waiting for a decision from the Clinical trials committee of a US hospital regarding whether they would authorize the life-saving, yet costly, interferon treatment. As she herself noted less than a month ago, the agony of the wait was actually worse than the disease itself; she felt abandoned by the oncologists who bluntly told her there was no hope left and that she wouldn't receive the medication. They wouldn't even certify the prescription that would have allowed her to purchase the drugs herself.
Whether interferon truly could have saved her remains a question for further analysis, but her family and friends are certain that had she received the treatment, she would still be with them today.
"She died from respiratory failure after her lymph nodes in her neck became inflamed. The doctors at the hospital told us she might have survived if she had possessed the standard 25,000 defense cells that a healthy person uses to fight such situations. But she only had 1,500—likely because she wasn't able to start the interferon therapy. Regardless of what the doctors claim later, I know she’s gone because they refused to give her the medicine she needed. That is something I will never forget, nor will I ever forgive," said Zvonko Pavošević, husband of Silva, who dedicated twenty years of her life to nursing those in need.
Dr. Dinko Burić, a local official who assisted Silva in raising funds for her first dose of interferon, also believes the medication could have saved or at least extended her life.
"The most heartbreaking part is that we were actually able to help her. The money was there, but they wouldn't certify the prescription that would let her buy the meds. I truly believe Silva would still be alive today, fighting for her health, if the doctors had given her even a glimmer of hope through approved treatment. Every doctor should try to help their patient until the very end, or at the very least, provide them with hope. Seeing us try to help often gives them the strength to keep fighting. I think Silva died because they stripped her of that hope. I'll never forget our last conversation or her words: 'They cut my life short,'" Dr. Burić remarked.

It's devastating... I saw the article in the news...

My dear friends, nothing is going to change unless we all raise our voices together. It isn't enough for two or three people to make a fuss. We all need to work on this collectively. I am asking you, if you haven't already, to sign our petition and send it to the address of the Patient advocacy group.

When we organize actions, please show up, and bring your family and friends—everyone you know. Change only happens when we insist upon it relentlessly.

It’s pretty depressing, though. Thanks to Angela Wright for pointing me in the right direction. I feel a little less hopeless now that I've realized my friend might actually get to live her life the way she deserves. Hang in there, fighters!

I honestly can't believe I'm just now diving into this! I’ve started scrolling through everything from the very first page, and while it might take me a few days to catch up on all the wisdom here, I simply refuse to let a single piece of advice slip past me.
It is absolutely heartbreaking how some doctors can be so callous, just dropping heavy, "dark" news in your face without any filter, only for it to turn out to be completely inaccurate anyway. Is it really that difficult to look someone in the eye and remind them that there is always hope, and that hope is the last thing to die? And don't even get me started on the endless waiting periods! We are dealing with illnesses where every second counts—where you need those pathology reports and scans immediately—yet they seem to have all the time in the world to sit on them.
The specialists at the DA were actually unable to properly interpret two different CT scans, an MRI, and several intense X-rays of his spine and pelvis. They kept insisting the issue was inflammation in the retroperitoneum.
My dad had his surgery on July 11th, and he spent 25 agonizing days waiting for the pathology results, only for them to arrive incomplete and requiring further testing. This past Wednesday, July 13th, we ended up driving the tissue samples over to Salat ourselves just to move things along. Now, we are just sitting here, waiting for the final word.
Since the surgery, they haven't provided us with any formal findings—not blood work, not urine tests, nothing from the CT, MRI, or bone scintigraphy—so I am turning to you all for guidance. Should we go out of our way to pay for private testing just to get some clarity?
It is absolutely killing me that we still don't know the exact location of the tumor—whether it's actually part of the pelvic bone or involving the sacrum as our experts suspect—and we are still in the dark about whether there are metastases, what the treatment plan should be, or even where to seek it.
I am especially reaching out to Jane Doe for advice, and I'd also love to hear from slyseal28 regarding sarcoma, if you don't mind me addressing you by your handle, given your experience with that specific diagnosis.
The mere thought of the upcoming wait for radiation or chemotherapy is just terrifying.
THANK YOU SO MUCH!

slyseal28 said:It’s heartbreaking... I actually caught an article about this in the Free Press...

My dear friends, absolutely nothing is going to shift unless we all find our voices and speak up together. It isn't enough to have two or three people out there trying to kick up a storm. This requires a collective effort from every single one of us. I am asking you, if you haven't already, please sign our petition and mail it directly to the Patient advocacy group's address.

When we organize rallies or actions, show up. Bring your family, bring your friends—bring anyone you know. Real change only happens when we become too persistent to be ignored.

I managed to gather quite a few signatures when I was out in Central Park holding that petition list. Where should I send it?

Steven Edwards44 said:"SILVA PAVOŠEVIĆ, A NURSE FROM A SMALL TOWN, USA, NEVER GOT THE APPROVAL FOR THAT LIFE-SAVING THERAPY FROM THE CLINICAL TRIALS COMMITTEE OF A US HOSPITAL
She passed away while waiting for approval for an expensive drug—interferon

I truly believe Silva would still be with us today, fighting for her health, if her doctors had given her a glimmer of hope by approving those medications. In my eyes, she died because they denied her that chance at recovery.

1. Let's be clear: interferon isn't a cure for malignant melanoma. It’s used to try and prevent a recurrence, and honestly, its effectiveness is highly questionable, if not outright negligible. Globally, this treatment is considered outdated and is hardly ever prescribed for melanoma anymore. This headline is just pure sensationalism; it's completely inaccurate to call it some kind of "miracle therapy" like the journalist claims.

2. There’s another important point in the quote: if she truly wanted that interferon and believed it was her one shot at survival, no one should have stood in her way. We all know how powerful the placebo effect can be, not to mention the massive role the human psyche plays in the healing process.

3. I am deeply convinced that the core issue here was a lack of information. If someone had sat her down after her first surgery and explained the actual risks of the disease returning, or if they had been honest after the recurrence and urged her to look into clinical trials abroad, she might still be alive. Instead, she received the same treatment we did back at our local hospitals—nothing but sympathetic glances and a death sentence.

Well, a year later, and we’re still right here in the thick of it. It’s been three months since the last PET/CT scan came back clean, and now it’s time for a new checkup. My husband is absolutely certain everything is fine; he keeps insisting he’s healthy. Meanwhile, I’m losing my mind. On one hand, I want him to get tested—I want those results to be perfect so we can finally move to six-month intervals. But on the other hand, the mere thought of the disease being back is terrifying. I dread the possibility of having to start this whole grueling process all over again, so sometimes I just don't want any tests at all. I almost want to live in total ignorance. Honestly, the easiest thing to do is just pretend none of this is happening...

slyseal28 said:It's heartbreaking... I just saw an article about it in the Free Press...

My dear friends, nothing is going to change unless we all raise our voices together. It isn't enough to have two or three people trying to stir up a storm. This requires a collective effort from everyone. I’m asking you, if you haven't already, please sign our petition and send it to the patient advocacy group's address.

When there are rallies or organized actions, show up. Bring your family, your friends—anyone you know. Real change only happens when we refuse to back down and keep insisting on it.

In my office alone (within my specific department), we've managed to collect about 100 signatures, and we aren't stopping there. Since it's a massive corporation (T-Mobile US), we expect to gather a huge amount of signatures.

Melissa Stewart said:I can't believe this! I've started scrolling through your posts starting from page one. It’s going to take me a few days to catch up, but I simply refuse to let anything slip through the cracks.
It is truly appalling how doctors can be so callous, just throwing "grim" news in someone's face that turns out to be completely inaccurate. Is it really that difficult to tell a person that there is always hope—that it's the last thing to die? And don't even get me started on the waiting periods! We are talking about illnesses that demand immediate action, biopsies, and various scans, yet they seem to have all the time in the world while we sit here.
Our specialists at the DA couldn't even correctly interpret two CT scans, an MRI, or those heavy X-rays of the spine and pelvis. They kept insisting there was inflammation in the retroperitoneum.
Dad had his surgery on July 11th, and he waited 25 days for a biopsy result that arrived incomplete—it actually required further processing. This past Wednesday, July 13th, we personally took the tissue samples over to the Mayo Clinic. Now, we're just waiting on the results.
Since the surgery, they haven't provided any findings—no blood work, no urine tests, no CT, no MRI, not even a bone scan. So, I’m wondering, what do you all suggest? Should we go to a private specialist instead?
The uncertainty is killing me. We don't know the exact location of the tumor (whether it's actually in the pelvic bone or part of the sacrum as our experts suspect), if there are metastases, how to treat it, or where to even go.
I am specifically asking for advice from Jane Doe, and also from slyseal28 and the sarcoma expert (I'm not sure if I should use your real names) since they have experience dealing with sarcomas.
The mere thought of waiting for radiation or chemo is terrifying.
THANK YOU!

If this is indeed a sarcoma—which you'll confirm once that biopsy report comes back—my strongest recommendation is to seek out specialists at a major medical center like Johns Hopkins, perhaps under Dr. Šantek (our current physician) or Dr. Herceg.

Ewing's sarcoma typically presents in children or early adolescents, most frequently between the ages of 10 and 20, though it can certainly strike at other stages of life. It most commonly shows up in the pelvis, the femur, the humerus, or the ribs.

Further testing, such as a CT of the chest, abdomen, and pelvis, or perhaps a PET/CT, will be necessary to confirm whether any metastases are present.

Your doctor will then walk you through the intended course of therapy...

I really want to say a huge thank you to slyseal28 for the advice. The last time we took the tissue sample over to the pathology lab, we were seeing a specialist at Salat. Naturally, they couldn't give us any real answers until the results were officially confirmed. I think I read somewhere else that seeking multiple opinions is actually what you should be doing. I'm seriously considering reaching out to the experts at Rib since you mentioned they have two specialists who focus specifically on sarcomas. My biggest worry is how to go about that—how do I ask for a second opinion without making someone feel insulted or having them dismiss me just because I want more certainty?!
By the way, looking back at the pathology report from the DA which wasn't 100% definitive, the tumor markers came back negative, but the vimentin was positive. Does anyone know what that actually means? I am completely lost! Is vimentin some kind of protein within the cytoskeleton? Also, the report noted that the tumor tissue is infiltrating the striated muscles. Is that a particularly bad sign? There was also quite a bit of necrotic tissue present, though there were no signs of mitosis.
The waiting is absolutely driving me crazy. We haven't had a clear diagnosis since July 11th, yet we know for a fact that something is happening!
Thanks so much, everyone!

Melissa Stewart said:Thanks so much for the advice you gave slyseal28. The last time we took tissue samples for pathology, we were seeing a doctor over at the Salat clinic. Naturally, he couldn't tell us much until the results were finalized. I think I read somewhere that you recommend seeking multiple opinions. I'm actually considering asking for a consultation at Rib since you mentioned they have two sarcoma specialists there. But how do you even go about doing that without offending anyone or having them write you off just because you want a second opinion?!
By the way, in the pathology report from the DA which isn't 100% certain yet, the tumor markers were negative, but vimentin was positive? What does that even mean? I haven't a clue! Is vimentin some kind of protein in the cytoskeleton? And it noted that the tumor tissue is infiltrating the striated muscles. Is that particularly bad? There was quite a bit of necrotic tissue present without any mitosis.
The waiting is driving me crazy. We haven't had a definitive diagnosis since July 11th, even though we know something is definitely going on!
Thanks, everyone!

I honestly don't think that in your current situation, you have the luxury of worrying about whether you might offend someone by seeking a second opinion. Besides, if they do take it personally, so what? What can they actually do to you? Even doctors seek second opinions when they fall ill themselves.
Secondly, if your physician gets angry about it, then frankly, you probably don't want to be under their care anyway. You have an absolute right to a second opinion.

If this really turns out to be a sarcoma—the guidelines in both Europe and America are identical: patients must be treated by a dedicated sarcoma specialist.

I can't interpret those pathology results for you because I'm not a doctor. Honestly, I don't think you should even stress yourself out trying to figure it out right now. The important thing is to wait for that pathology report to come back, and once it does, head straight to an oncologist.

Here we go again, waiting on medication. My treatment was supposed to kick off on August 14th. But, of course, because the holidays hit right at the wrong times—specifically around August 5th and August 15th—everything has gone sideways. We had everything scheduled, then moved it to Thursday, August 21st... but now even that's off the table because the clinical trials committee of a US hospital hasn't cleared all the cases, including mine.

The excuse they give? A staffing shortage due to people taking vacations. Honestly, how are you supposed to explain to a hospital committee that cancer doesn't take a summer break?

So now the therapy is two weeks behind schedule, and who’s going to answer for that delay? Nobody. Not anyone, except for the patient.

That statement from the Secretary claiming that solutions for expensive drugs can be sorted out within a week is just plain false.

I've already reached out to the media.

slyseal28 said:We’re stuck waiting for medication again. Treatment was supposed to kick off on August 14th. But because the holidays hit right at the wrong time (August 5th and 15th), everything just fell apart. We had it all mapped out, then rescheduled for Thursday, August 21st. But now? The clinical trials committee of a US hospital hasn't cleared all the cases—ours included—so even Thursday is looking unlikely.

The excuse they're giving us? A staffing shortage due to people being on vacation. Honestly, how do you explain to a hospital board that cancer doesn't take a summer break?

So now the treatment is two weeks behind schedule, and who carries the weight for that delay? Nobody, except the patient.

That statement from the Minister claiming that solutions for expensive drugs can be sorted out in a week? It’s just plain false.

I've already reached out to the press.

Keep pushing forward; stay strong.
We're all standing right there with you.

slyseal28 said:We’re stuck waiting on meds again. Therapy was supposed to kick off on August 14th. But since the holidays lined up—with the 5th and the 15th being off—everything just fell apart. We had it all planned out, then moved it to Thursday the 21st. But now, the clinical trials committee of a US hospital hasn't cleared all the cases, including ours, so Thursday is off the table too.

The excuse? Not enough staff because everyone is on vacation. How am I supposed to explain to a hospital committee that cancer doesn't take a summer break?

So now therapy is two weeks behind schedule, and who’s going to answer for that? Nobody. Just the patient.

That statement from the Minister about how solutions for expensive drugs get sorted in a week is total nonsense.

I’ve already reached out to the media.

God, slyseal28, I really hope the therapy starts this Thursday!

I'm exhausted by all these delays, but even if we have to crawl, we have to keep pushing for our loved ones!
Hang in there, 🙂!

I haven't been on the forum much lately; I've mostly been staying with my parents helping my mom.
For the last 15 days or so, she and I were actually in Germany, where she got her first immunotherapy injection (for anyone wondering what that entails, go read Elizabeth Gonzalez55's posts).
On the 6th day after another surgery, we traveled; we had previously sent the removed tumor tissue to Germany, which serves as the primary immunotherapy, and the results are looking even better.
Mom handled the trip (two legs of about 30 hours each) pretty well, plus the leukapheresis went fine, along with five local hyperthermias. Her biggest issue right now is swelling in her arm—which makes sense, considering she doesn't even have lymph nodes left after three surgeries in five months. Hopefully, she can start lymphatic drainage soon.
She's back home now, and we're just hoping for the best!

That article from the local paper hit me hard, too. And my mom's doctor kept stalling with interferon, trying to push chemo and radiation, even though we all know those aren't helpful for melanoma... meanwhile, the surgeon wrote her an urgent prescription for interferon... Mom chose immunotherapy, and honestly, if she hadn't, I don't know if she would have ever gotten that interferon unless she fought for it... it's terrifying...
I agree with what Elizabeth Gonzalez55 wrote above—the placebo effect is massive, and that lady really should have received that interferon prescription.

Now all we can do is pray and believe that Mom will be okay! That's what keeps us going.

To everyone fighting this and their families—stay strong and don't back down. Believe in healing; the fight is far from over!