Support for families dealing with cancer and other serious illnesses (Part II)

Thank you all so much.
Unfortunately, we have truly reached the end of the road now.
My sister is a physician, so having her expertise meant we navigated this journey much better than many who are left to figure everything out on their own.
Mom possesses such incredible willpower and an enormous zest for life, but sadly, even that isn't enough.
Right now, she is being managed with patches and very little fluid intake; amidst all this chaos, it seems there were some brain metastases or perhaps they've spread to the brain. She is completely immobile—just skin and bone, limp as a ragdoll. This morning she had a choking episode; unfortunately, along with all the other metastases, the cancer has consumed her entire left lung and moved onto the right.
By all accounts, she may only have a few days left, unless we are once again surprised by a miracle.
What can I even say? It looks like we weren't dealt a winning hand.
To everyone finding themselves in a similar situation, I wish you so much strength. There are cases where there is still a chance, but it requires immense patience and, unfortunately, a lot of connections and money.
My mother just hasn't had any luck from the very start.
Based on everything I've read and what my sister and the other doctors have told me, this type of gynecological Leiomyosarcoma is exceptionally rare. It is incredibly difficult to detect, and unfortunately, they don't fully understand how it originates or how to treat it because it literally destroys a person before they can even find a way to stop it.
Given everything our family has gone through, I just want to say: please, seek a second, third, or even fourth opinion. We might not be in this position if we had.

placidwalker452, hang in there, dear... I’m sending all the strength in the universe your way and wishing you peace of mind. Give your mom a huge hug and just talk to her—let her go. Tell her it’s okay if she wants to leave, that you’ll be fine, that she’ll be fine, and that her loved ones will be waiting for her... It’ll make things so much easier for both of you. ❤

I had some trouble getting the file to upload, so I’m just going to type out the results from my CT scan instead... it’s a bit of a long one, so please forgive me in advance.

A CT scan of the chest and abdomen was performed using native 5 mm slices, supplemented by a manual intravenous administration of contrast media on a single-slice CT scanner.
Regarding the status following the subtotal esophagectomy and esophagogastric anastomosis: In the area spanning the junction between the proximal and middle esophagus, the esophagogastric anastomosis is clearly visible. While this imaging method allows for a reasonably clear morphological view of that specific region, there is an oval soft tissue mass measuring approximately 24x22 mm located ventrally to the anastomosis, positioned between the trachea and the proximal third of the esophagus. Within this mass, there is a small, eccentric, hyperdense zone—likely a lymph node with some calcification—though given the regular contours of the mass, the possibility of residual primary disease seems less likely at this stage.
The CT scan shows some subcarinal lymph nodes that have multiplied, with the largest measuring up to 12mm. There are also some smaller lymph nodes in the pretracheal area reaching about 5mm. Aside from those, I didn't see any other enlarged or extra lymph nodes in the rest of the mediastinum shown on the imaging.
The axillary lymph nodes show a fatty hilum and measure up to 10mm in diameter.
The heart is mostly within normal limits, though there are some calcifications present in the coronary artery area along with a calcified aortic valve. Additionally, the aorta shows a normal lumen width, despite some signs of atherosclerosis.
The lung lobes appear expanded, and there are no definitive signs of intrapulmonary spread of the primary disease. In the area of the posterior segment of the right upper lobe and the superior segment of the right lower lobe, some scarring and partial ventilation obstructions are visible. There is no evidence of pleural effusion.
The liver shown here appears to be of an appropriate size. However, the parenchymal structure is natively inhomogeneous. Specifically, there is a hypodense zone measuring 24mm located subcapsularly within area II; following IV contrast administration, this area shows peripheral imbibition. Additionally, a formation with identical characteristics is visible subcapsularly in area VIII.🙏So, looking at the imaging results: there's an IV application showing a diameter of up to 19mm, and in the area of segment VI, we’ve got a subcapsular diameter of about 20mm. These could potentially be secondary growths. As for the rest of the liver parenchyma, there aren't any visible lesions or significant changes to report.
The gallbladder appears to be an appropriate size with a normal wall thickness, and there are no detectable stones or sediment within the lumen via this method. Additionally, the bile ducts show no signs of dilation.
The spleen looks morphologically normal on the scan.
The thyroid gland appears to have a homogeneous structure, surrounded by stable levels of peripancreatic fat, with no focal lesions or abnormalities detected on the native imaging layers.
The adrenal glands appear morphologically normal.
The kidneys appear to be in their normal anatomical positions, showing appropriate size and shape. The parenchymal thickness looks standard, and there are no signs of hydronephrosis or kidney stones.
The CT scan results show enlarged and numerous lymph nodes extending from the level of the celiac trunk down to just below the origin of the right renal artery, spanning both the interaortocaval and lateroaortic regions. The largest of these nodes measures up to 22mm in diameter.
On the left side of the anterior abdominal wall, right next to the rectus muscle, there’s an oval-shaped mass measuring roughly 33x23mm. It looks somewhat inhomogeneous on the CT scan. While this could potentially represent something secondary, we have to consider that this is the exact site of a previous stoma. Because of that, it might just be scar tissue. To be certain, it would be wise to compare this current CT scan with the imaging done during the last hospitalization—specifically the one taken right before the surgery—since those prior records weren't included here.
Based on the abdominal imaging provided, there is no sign of free fluid.

As far as I can gather from the results, there's metastasis in the liver and lymph nodes, with the possibility that it's spread elsewhere as well. I'm sending everything over to my oncologist tomorrow, so we'll see what the next steps look like once they've had a chance to review it.
In the meantime, I’d welcome any thoughts from the community—especially if any of our doctors happen to be lurking here.

Fiza, look, regarding the Xeloda—it’s being used off-label for this diagnosis. You should double-check that. Since they passed him over for oncology treatment the first time for some reason, I’m honestly worried there isn't much room left to maneuver now either... man, life can be brutal 😢 ...hang in there

Does anyone here have any experience dealing with malignant melanoma? It was discovered back in June or July in my father. He had surgery on his back, where they ended up removing everything right down to the muscle. By November, we found metastases under his left armpit, so on December 9th, they went in and removed 14 lymph nodes. He seemed to be recovering okay, the wound was healing up nicely, but while we were busy wrestling with getting a PET CT scheduled—which has been a nightmare since we're dealing with things over in Canada—we got news on January 7th that there’s a new metastatic spot under the left armpit. They aren't even sure if it's a leftover from the last surgery, despite insisting they cleared out everything that needed clearing, or if it's something entirely new... and then there are two more appearing under the right armpit. He has a consultation tomorrow, and they’ll likely operate again this Tuesday or Wednesday. We're going to get him started on Zelboraf. So, this marks his third surgery since June of 2014. Please, I have to ask, is this all happening too fast? Does this mean we should be bracing ourselves for organ involvement within a month? Is it even possible to beat this? I can't stop gripping my head and crying; these dark thoughts are just suffocating me. My only real question is, will my father live long enough to see me walk across that stage at my graduation, holding my diploma in my hands? I can't believe I'm even thinking like this; I always just assumed it was natural, that my parents would grow old and eventually see their grandchildren... but now I'm stuck questioning how much time is left, and for how long we can actually live with this hanging over us. Again, if anyone has experience with melanoma and how quickly this progresses, please, reach out...

Angela Wright said:Fiza mentioned that they’re actually looking at using Xeloda off-label for this diagnosis. You might want to double-check that. Given that, for some reason, he wasn't considered a candidate for oncology treatment initially, I'm worried there isn't much wiggle room now either... well, life happens, I guess. 😢 Hang in there.

The oncologist scheduled us for Thursday after 1:00 PM. We have a referral for an internal medicine oncologist to decide on the chemotherapy path, so we'll finally see which direction we're heading this Thursday.
My mother-in-law is hoping everything turns out fine, and I just can't bring myself to tell her how things actually look, even if I eventually have to 🙄

placidwalker452 sending you all my strength. hang in there..

Carol Price6 my dad was exactly the same way at first.. he even signed those papers saying he was going home on his own responsibility.. eventually, he adjusted a bit.. he didn't want to tell anyone anything, but I found his test results.. I started digging, told him I knew everything, and now we're fighting this together.. lately, he's just left everything in my hands; I handle the doctors and report back to him.. slowly, everything will fall into place...

Listen, please.. does anyone know what might be happening? My dad's hands have darkened, his skin is peeling, and worst of all, he has absolutely no sensation in his fingers anymore!??

He's currently on Xeloda and Avastin.. could this be a side effect?

How do you deal with this?

cosmiclynx14 said:But please... does anyone actually know what is happening here? My father's hands have darkened, his skin is peeling off, and worst of all, he has completely lost sensation in his fingers.

He is currently on Xeloda and Avastin... could this be a side effect?

How is this even managed?

With my mother, the most significant side effect of chemo was exactly that—losing all feeling in her hands and feet. To deal with it, they prescribed her Neurontin and Neurobion. It takes some time before you start seeing results, but now she's just left with discomfort in the tips of two or three fingers.
The frustrating part is that those medications are typically intended for epilepsy or bipolar disorder, so to use them for anything else, you often have to get a private prescription. Back then, Neurontin was about $20- $10, while Neurobion was around $100-$120 for a pack of 100, so it wasn't exactly a crushing long-term expense...
As for the skin, we were applying Neutrogena to her hands a hundred times a day, which significantly reduced the peeling.

Rachel Williams said:My mom dealt with chemo side effects where she completely lost sensation in her fingers and toes. They ended up putting her on Neurontin and Neurobion for it. It takes some time for those to actually kick in, but right now, she’s just dealing with some irritation on the pads of two or three fingers.
The annoying part is that those drugs are technically categorized for things like epilepsy or bipolar disorder, so if you want them for anything else, you basically have to get a private prescription and pay out of pocket. Neurontin was about $20-$10, and Neurobion runs about $100-$120, but you get a pack of 100, so in the long run, it isn't exactly a financial disaster...
As for her hands, she’s applying Neutrogena dozens of times a day, which has really helped cut down on the peeling.

Thanks so much... I feel a bit better now. Honestly, I was starting to spiral thinking about all sorts of things—I mean, literally not being able to feel my fingers...
In the meantime, we managed to get an appointment scheduled, so I'm hoping everything gets sorted out soon.

Thanks...

cosmicjackal4 said:Has anyone here dealt with malignant melanoma? It was discovered in my father this past June/July. He had surgery on his back—they removed everything down to the muscle. By November, there were metastases under his left armpit, so on December 9th, they removed 14 lymph nodes. He seemed to be recovering, the wound was healing, but while we were struggling to get a PET CT scheduled (we're dealing with the medical system in Canada), a new metastatic spot popped up under the left armpit on January 7th. They aren't sure if it's a remnant from the first surgery or something entirely new, but now there are two new ones under the right armpit too. There's a tumor board meeting tomorrow, and he'll likely undergo surgery again this Tuesday or Wednesday. We’re going to get Zelboraf. This marks his third surgery since June 2014. Please, is this moving too fast? Does this mean we should expect organ involvement within a month? Is this even winnable? I can't stop crying; I'm just losing my mind. All I can think about is whether my father will live long enough to see me walk across the stage at my graduation. I can't believe I'm even questioning this; I always just assumed life was natural and predictable—that my parents would see their grandkids and grow old. Now, I'm stuck wondering how much time is actually left. If anyone has experience with melanoma and how quickly it progresses, please reach out....

Unfortunately, you're looking at a very difficult diagnosis where the treatment options are extremely limited. 😢 It's an aggressive form of cancer that has a real appetite for metastasis.
I know people who have managed to hold it off by combining surgeries with oncological treatments through various clinical trials. One well-known journalist I knew lived for 13 years fighting it that way. My fear is that modern medicine still hasn't found a definitive answer for this specific diagnosis, so much of it boils down to trying to squeeze out as much quality time as possible.
How long someone lives with this depends on a massive number of variables and circumstances. The best advice I can offer is to not look further than tomorrow. Face the situation as it unfolds and try to take it one day at a time. Days turn into months, and months turn into years. There's simply no other way to handle it.

Amanda Miller69 said:The oncologist scheduled us for Thursday after 1 PM, along with a referral for an internal medicine oncologist to decide on the chemotherapy plan, so we'll see which way we're heading this Thursday.
My mother-in-law is hoping everything turns out fine, and I just don't have the heart to tell her how things actually look, though I might eventually have to 🙄

Keeping my fingers crossed for you...
And listen, when it comes to mothers-in-law, maybe sticking to that half-truth method again is for the best... just telling her "we're going to see what the next steps are" isn't ideal, but it works.
...I really hope your brother-in-law can come visit again so you don't have to navigate all of this alone.
Man, I'm so sorry, it's just not fair that this is hitting you again... life can be incredibly cruel sometimes. 😢

Naturally, we didn't manage to get anything accomplished with the oncologist today.
She reviewed the results and noted that the report is quite ambiguous; it suggests the findings could be indicative of secondary growths, though they don't necessarily have to be. She took the report and the CD over to the radiologist, who agreed that while it could represent metastases, the picture is too blurry—we really need a PET/CT to get any clarity.
The oncologist actually questioned why the CT wasn't performed in Washington, D.C., rather than in a smaller town like Pakrac. Honestly, I should have insisted on having it done in D.C. immediately and pushed for a PET/CT instead of just a standard MS CT... though I suppose the main difference lies in the scan resolution and depth.
So, there's no progress. We’ll head over to Medikol with the recommendation, but then we’ll just be waiting another week or ten days for them to order it.😠

Does anyone happen to know where one can get tumor markers drawn privately, and what the typical cost looks like?
She advised against seeing the surgeon for a follow-up until the PET/CT is completed. Apparently, that specific type of marker (CYFRA) is only tested at Mercy Hospital, so she was thinking of handling it there while we were already in the area—unless, of course, it's possible to get it done sooner elsewhere to avoid the wait.

Good evening, everyone.
I’ve read through this entire thread from the very first page, and I finally reached a breaking point where I just had to share what I’m going through with people who actually understand. I can't hold it in anymore.
My dad was diagnosed with a throat tumor. He underwent surgery on October 27th, where they had to remove his larynx, vocal cords, thyroid, all the lymph nodes on the right side of his neck, and several on the left. Recovery was actually going incredibly well. Once he was discharged from the hospital, he started breathing and speech exercises with a specialist because he really isn't a fan of the idea of using speech prosthetics; he’s been putting all his energy into mastering esophageal speech instead. He felt pretty good—his trademark optimism and upbeat attitude never wavered—but then complications hit right before Christmas. He developed a high fever and redness around the tracheostomy site on his neck, which turned out to be scarlet fever. He was seeing doctors every day to have the wound dressed and treated, and after a week of antibiotics, things seemed to be improving. Then, last Thursday, he started his first round of radiation, and that’s when the new nightmare began. Small lumps appeared around the wound, and his left neck became swollen with a noticeable mass. A few days later, his entire head swelled up; he looks like he did immediately after the initial surgery, like his skin is about to burst. They told us it’s a reaction to the radiation, but the real issue is that mass, which isn't shrinking—it's growing. He saw his oncologist today, who ordered blood work and decided that on January 20th, Dad will start his first round of chemotherapy (he’s scheduled for 32 radiation sessions and 2-3 rounds of chemo interspersed), and they will target the radiation specifically at that lump. Today just hit me like a physical blow; it feels like we're back at square one. It’s unbelievable—for every single step forward, something happens that drags us two steps back. I find myself wondering how much longer we can endure this. The most heartbreaking part of this whole ordeal is that it could have all been prevented. We wouldn't be facing such a radical surgery if the very first doctor he saw—back in 2013 and again last spring—had actually taken him seriously. Dad had been complaining for ages about pain, burning in his throat, and difficulty swallowing, but that doctor just told him to chew Orbit gum. So, Dad switched doctors and went to a specialist who sent him for sinus imaging and insisted the throat irritation was just acid reflux. That went on all last summer until Dad finally went to Mercy Hospital, where they sent him for a puncture, a biopsy, and five different CT scans, which finally revealed the truth.
I am sorry for the massive wall of text, but I’ve been trying so hard to stay strong, and today just slapped the strength right out of me. I feel like we are spinning in a closed loop with no way out.

Of course we didn't get anything done with the oncologist today.
She looked over the results and said they’re written pretty ambiguously—apparently, they could point to secondary issues, though they don't have to. She took the report and the CD over to the radiologist, and he’s saying the same thing: it might indicate metastases, but the picture is too blurry; we really need a PET/CT.
The oncologist actually questioned why the CT wasn't done in Washington, D.C. instead of some small town like Pakrac. Well, why didn't you tell me right away to get it done in D.C. and that we needed a PET/CT instead of a standard MS CT... and what's even the difference there anyway? I'm assuming it's just the depth of the scan.
And nothing to show for it—we head to Medikol with the recommendation, they'll order it in a week or ten days, and then we just wait again.

Does anyone know where you can get tumor markers drawn privately and how much that costs?
She told us not to go to the surgeon for follow-ups until the PET/CT is finished. Apparently, that specific marker (CYFRA) is only tested at Mercy Hospital, so she thought we could just knock it out there while we were passing by, but if we can get it done sooner somewhere else, she doesn't want to wait.

Dear Zachary Howard2, first of all, I am so sorry for everything your father-in-law is going through. I read this thread regularly and keep up with everyone's updates, so I know what you went through with your own mother.

I can answer your question about the marker based on my own experience (my dad gets his CYFRA 21-1 checked every three months)—these markers are available at general hospitals (we get his done in Koprivnica), and I'm pretty sure almost any well-equipped private lab can do it. As for the price, I honestly don't know.
My dad usually has his blood drawn for the marker analysis at our local health center clinic, and then we send the sample along with the referral via official courier to the lab in Koprivnica, which handles almost all the markers. (They transport urine and stool samples to the local hospital every day, so we can basically piggyback on their transport service for other things).
The marker results are ready the same day, and the same courier picks them up for us the next day when they go to grab the culture results, so we just pick them up when they arrive.

I believe you might even be able to get the marker drawn at your local hospital; just call the lab and ask. I think Medikol does it too, so maybe he could get it done the same day they perform the PET scan. Give them a call and check. Assuming, of course, you're talking about the same CYFRA 21-1 marker (since you wrote "cyfra").

I'm truly rooting for good results for you guys!

Hey everyone,

Here are 4 natural ingredients with proven anti-tumor effects:

1. Carrots (drinking the juice)
http://www.ncbi.nlm.nih.gov/pubmed/25337563

2. Taheebo tea (from Brazil)
http://www.ncbi.nlm.nih.gov/pubmed/?term=taheebo

3. Chaga tea (birch bark)
http://www.ncbi.nlm.nih.gov/pubmed/22135889

4. Oregano
http://www.ncbi.nlm.nih.gov/pubmed/23163852

5. Vitamin C
http://www.ncbi.nlm.nih.gov/pubmed/25362213

You can find Taheebo and Chaga on eBay... they'll definitely help a little, though nobody should expect an immediate cure.

Also—for recovering after chemo, nothing beats good quality natural bacon.

Rachel Wood27 said:Dear Fiza, first of all, I am so sorry for what your father-in-law is going through. I read this thread regularly and follow everyone's progress, so I know exactly what you went through with your own mother.

Regarding your question about the tumor marker, based on my own experience (my dad gets his CYFRA 21-1 checked every three months), these markers can be tested at general hospitals (we get his done in our local area), and I suspect almost any well-equipped private lab could do it too. As for the cost, I honestly haven't a clue.
My dad usually has his blood drawn for the marker at our local health center clinic, and then we send the sample along with the requisition via a courier service to a larger facility that handles all sorts of specialized testing. They actually transport urine and stool samples to the main hospital every day, so we just piggyback on their transport service for other things.
The results for the marker are usually ready the same day, and the same courier picks them up the following day when they go to collect the culture results, so we just grab them when they arrive.

I imagine you might even be able to get the marker tested at your local hospital; just give their lab a call and ask. I believe a place like Medikol would offer it as well, and they might even be able to do it on a Friday if you catch them. It’s worth a phone call. Just make sure we are talking about the same thing—CYFRA 21-1—since that's what you mentioned.

Sending you all my best wishes for good results!

Thank you; I truly hope your father stays healthy and well, too.

We have a PET CT scheduled for January 29th. I plan to arrange to pick up the results in person as soon as they are finalized so we aren't stuck waiting for them to be mailed while the clock is ticking... I told him he should get the marker drawn that same day at the hospital (yes, it is CYFRA 21-1) so we have everything ready.
As for this oncologist, despite being recommended, it feels like he's already written my father off. I'll see what he says next time, but I think I'm going to look for a different specialist. He was recommended to me by one of Dr. Erceg's colleagues at the hospital. Does anyone here have experience with him, or perhaps a recommendation for another oncologist?

Fiza, I think my colleague was actually referring to Dr. Herceg. He works alongside Dr. Šantek and specializes specifically in rare tumors. Honestly, given your father-in-law's situation, Šantek might be the better fit—not just because he's closer, but because he has a much warmer bedside manner. Herceg can come across as pretty cold and standoffish sometimes. While Šantek is the type of doctor who will fight tooth and nail for his patients, Herceg tends to be more purely pragmatic about things. That’s just my two cents, though; both of them are top-tier experts and among the leading oncologists in the entire country.

Seeking assistance if anyone has insight

My mother is fighting an ovarian tumor. Since the backstory is far too long, I will attempt to provide a condensed chronology:
2013 - January: First surgery in Mostar. Dr. Knežević removes a "tumor plaque" from the abdomen and removes the right ovary; reaching the left one is impossible due to specific complications. The tumor is Stage 4 and has caused abdominal adhesions, making the ovary inaccessible. Following this, she undergoes 9 cycles of chemotherapy. Lung imaging shows no metastasis, and after a certain number of treatments, the fluid recedes. Markers drop from 3000 down to the normal range. The remaining tumor on the left ovary measures 3 cm.
2014 - May: Dr. Ćorušić (Washington, D.C.-Mostar). My mother’s condition is almost excellent. She tolerated the therapies well, aside from rapid fatigue and pressure on her shoulders; everything else seems fine. During this surgery, Dr. Ćorušić was intended to remove the remaining ovary and the tumor. However, upon opening and seeing the state of the intestines, he made the decision (his own words) that it was better not to touch it. He determined the procedure would be too high-risk and would require removing significant portions of the bowel—not because the tumor is on them, but because the adhesions are so extensive they prevent access to the ovary. To reiterate: his decision was to leave it alone.
After that operation, during a meeting with Dr. Knežević and Dr. Ćorušić, Knežević used the phrase, "If I were to operate on her, it would be like signing her death warrant."
2015 - January: We perform a second PET-CT, which shows the tumor growing. It went from 3 cm (02/2014) to 13 cm (01/2015). We arrange a meeting with Dr. Haller (Rijeka-Mostar). After the examination, Dr. Haller stated that the tumor must be surgically removed, even if it means terminal outcomes follow. When my mother explained that Knežević and Ćorušić said the "intestines are fused" and therefore they cannot or will not operate, he responded, "It can be done." Throughout the entire meeting, based on how Dr. Haller spoke, I walked away with the impression that he knows it is possible. He was quite confident and certain of a positive surgical outcome. He noted that while the tumor does not kill quickly, it is growing, and it is only a matter of days before complications arise. While we spoke in the room, Dr. Soldo (Mostar) was also present—he attended the previous surgery performed by Dr. Ćorušić. He said nothing; he neither confirmed it was impossible nor claimed it was possible... he simply remained silent.
Haller stated he cannot perform the operation in Mostar, but rather in Rijeka where he has a specialist team, including urologists, etc., noting that the postoperative care there is superior. He admitted the surgery is demanding and complex, yet he sounded capable. I suspect he was somewhat guarded because Dr. Soldo was present, and he likely didn't want to appear as though he were undermining him.

So, here is what I am wondering. Given that we have heard nothing but praise for Dr. Haller's expertise, but we have also heard great things about Dr. Ćorušić, has anyone here had experience with these doctors? What is the quality of gynecological care in Rijeka? Or perhaps someone has had similar experiences? We are truly at a crossroads regarding what to do. Haller also mentioned that we could look into Washington, D.C. or Split, as the procedure can be performed there as well. We aren't sure if Dr. Haller is truly the best, or if there is a third option in Washington, D.C. or Split that might be superior.
Thank you

The issue isn't actually about a doctor's expertise; it’s about the lack of backbone in the first guy you talk to. It's rare to find an American physician who is willing to just say, "Look, I don't dare touch this, I don't know, or I simply don't have the equipment, but maybe Dr. Smith over at Mayo Clinic would be better suited." You rarely run into a doctor here who is willing to admit they've hit a wall. Go back to the one who stayed silent after the first surgery—the one who was right there in the room. Sit him down, face-to-face, and massage his ego a bit. Tell him, "We really value your perspective since you saw everything unfold firsthand," and see if he finally opens up.
Go ask Dr. Bauman at Mercy Hospital for a second opinion. If he can't help, at least he'll point you in the right direction.
Good luck!

Back again...
The PET/CT scan showed suspicious secondary involvement at TH10.
His entire right lung lobe is riddled with these secondary sites—the doctors were blunt: surgery would kill him because they’d have to remove the whole right lung.
I have no reason to doubt them. Chemotherapy is the recommendation, though we need a scintigraphy first.
We’ve all suddenly become incredibly brave and optimistic—even though the doctors insist we should be "moderately" optimistic at best. Personally, after being a total wreck for about two months, I’ve somehow found this calm, positive strength... for myself and everyone around me.
What I need to know now is: does anyone here have experience with chemotherapy for bronchial adenocarcinoma? Is there a specific thread on this site regarding what to expect during treatment? My dad is terrified—his only thought is how much it's going to hurt. Legend 😁
The headaches are still unbearable. The PET/CT shows everything else is clear except for the lungs and that TH10 vertebra—which isn't even confirmed as a metastasis yet. No one is telling us if a metastasis in the spine could actually cause such agonizing headaches...
Does anyone have dietary advice that isn't overly complicated? I’m reading everything under the sun and honestly, I can't trust anything anymore...🙄