Support resources for families dealing with cancer and other serious illnesses

driftingsurfer14 said:I'm good, thanks.🙂 I honestly hope that PhD arrives soon too; we've been waiting 18 days, which feels like an absolute eternity.

That’s way too much, and they won't stop obsessing over their phones either.

Angela Wright said:That seems excessive—they are absolutely obsessed with their phones.

I assume it’s all due to the busy holiday season. I call those six people every single day—but they just wait until the representative from Merkur arrives before they can tell me to go ahead and call again tomorrow. 😢

We headed out for a long chemo session yesterday... we arrived around 11:00 AM, but didn't actually get seen until about 3:00 PM. The crowds were just overwhelming, which made everything so exhausting and difficult for Mom, especially since she can't sit for long periods because of her bones. We went through the exam, and I showed the oncologist Mom's left breast. After checking the breast, the doctor looked at the large lump under her spine, and her expression just turned so heavy and sorrowful; she had this look of genuine distress that really hit home. For the first time in my life, I truly saw a doctor who actually cares about their patient and felt deep empathy for what Mom is going through. She immediately sent us for cytology, where they found a large cyst and drained 3.5 ml of fluid, along with something else that they explained wasn't quite the same as the cyst, though they still took a sample. The results should be in this Friday, and honestly, we are terrified because looking at everything together right now, nothing seems positive. Yesterday was a much stronger, more aggressive round of chemo; we’re just waiting for the side effects to kick in now. Usually, she gets two IV bags and one chemo dose, but yesterday it was two IV bags and four chemo doses, which tells us the side effects are going to be much harder... normally, these stretches last about two weeks where she can't eat or drink anything... it becomes a living hell that I'm starting to dread. My mom looks okay on the surface, but you can visibly see her wasting away on the inside. I hate Tuesdays, and I hate these days when fear takes over and I have to watch her like this knowing I can't do anything to help. It seems like the visible lumps (the metastases) on her body are slowly disappearing, but as they fade, it feels like they are moving toward her vital organs... that doesn't feel good at all. The doctor gave us a referral for bloodwork to check her creatinine and urea levels to see how much damage has been done to her kidneys. So, that's where we are. I'm going to go now and try to prepare myself mentally and physically alongside her for the rough side of this treatment... I wish you all the best luck in the world and hope all your dreams come true. Just like you, I have one dream and one wish, but mine seems to be fading a little more with every passing day. 😢

driftingsurfer14 said:I’m guessing the delay is because of all the holiday madness. I call those guys every single day, but they just wait until someone from Merkur gets back, then they tell me I can just try calling again tomorrow. 😢

Give pathology at Merkur a call and see what the deal is.

@hollowridge88 hang in there. The fact that the lumps under the skin are receding is actually a good sign. It means the therapy is actually doing something. Think of cancer like a wild boar—it goes absolutely berserk once it's wounded. Just focus on staying strong and don't let your spirits drop; if you lose heart, you're basically handing the disease the upper hand and letting it take total control of your life.

Way to go, Vedran, may dear God help you through this...🙂

Angela Wright said:Give the pathology department at Merkur a call and see what they say about it.

@hollowridge88 hang in there. It’s actually a good sign when those lumps under the skin start receding, because it means the therapy is finally making an impact. You know, cancer is a bit like a cornered animal—it fights back hard when it feels threatened. Just try to stay focused on getting through this and don't let your spirits drop, because if you lose heart, you're essentially giving the illness permission to take complete control over your life.

Thank you, Angela Wright We really do try our best to stay positive and keep our chins up, but whenever we get news that isn't what we were hoping for, there are moments where everything just feels heavy and we hit rock bottom... yet, even then, we stay optimistic and keep telling Mom, "Don't worry, honey, everything is going to be okay," putting on a brave face because being strong and holding onto hope is the only thing we can do, no matter how much people might doubt us or how hard it is to watch her struggle.

Please, just stay strong while dealing with your mom's illness. I treasure every single moment I had with my own mother. Especially those walks we took this past summer. Even though we didn't really leave New York City, it was just wonderful. Mom had recovered so beautifully. Even her home health nurse, who hadn't seen her in a little while, was actually surprised by how much she'd bounced back. Honestly, if it hadn't been for that strike, I'm certain she would still be here with us. No matter how much they claim that nobody suffered because of the strike... they're wrong. It’s the most vulnerable patients who suffer the most. And there's one thing I just can't wrap my head around. When Mom passed away so suddenly at the hospital—back in October 2013—I remember searching the Department of Health website for the hotline number, and right there, it stated that increased mortality rates were expected during the strike. Yet, in their latest Medical Journal, they conclude the strike went perfectly and that no one was harmed, which is just flat-out untrue. I guess... who are we to complain? If only we had been born in Germany so we could have access to world-class healthcare.

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Hello,
Does anyone happen to know how I might be able to get an Iscador injection from Canada? I can't find it anywhere here in the States. If anyone knows a way, please let me know. Thanks.

Hi everyone! I'm back again looking for some advice or maybe just a second opinion... As I mentioned before, my mom received her chemo treatment this past Tuesday, and she was experiencing intense lower abdominal pain that very same evening. On top of that, she spent the entire night struggling with severe kidney pain, which has unfortunately continued all through today as well. According to the doctors, there are two cysts on her kidneys measuring 19 mm and 26 mm. Could the pain be a side effect of the chemo, or perhaps related to the metastases on both of her adrenal glands, or could it be an infection? She’s been taking Ibuprofen 600 mg and is currently wearing a Morphine patch, but even after taking three doses of Ibuprofen today, we haven't seen any relief in her pain levels. Thank you!

@driftingsurfer14/">@@driftingsurfer14

I don't post on this thread much, but I check in here every now and then to see where everyone left off. My diagnosis was also Non-Hodgkin diffuse large B-cell Lymphoma—it was located on the left side of my neck and in my left tonsil. Stage IV (not sure if it was A or B, I think one means you have symptoms and the other doesn't, something like that). I finished chemo between November 2012 and May 2013, and I've been in remission since. I'm 23, by the way. I'm being treated in St. Louis, and from everything I've read, Dr. Aurer is highly recommended in NYC. Also, what Angela Wright told you is spot on; that falls under hematology. Early on, I actually talked with Dr. Nemet at Rebro. Everyone there seems top-notch, so it's probably best for your dad to try them out. And yeah, I waited forever for my pathology results—just call them and pester them, there's no other way... let me know if you need anything else and hang in there.🙂

Good morning, everyone! So, I just got my cytology results back from the biopsy on my left breast, and since most of these medical terms feel like a foreign language to me... I'm looking for a little guidance again. Microscopic findings show an evacuation of 3.5ml of clear liquid. Under the microscope, they found clusters of apocrine metaplasia cells, phagocytes, and some intact and hemolyzed erythrocytes. Impression: Apocrine cyst (C2). Honestly, the only thing that really put my mind at ease was seeing that there’s no mention of cancer... which I assume is a great sign! Thanks so much to everyone for your help and answers.

copperbison4 said:@driftingsurfer14/">@@driftingsurfer14

I don't post here much—though I do read through where I left off every now and then. My diagnosis was also Non-Hodgkin Lymphoma—specifically diffuse large B-cell—located on the left side of my neck and left tonsil. Stage IV (I can't recall if it was A or B—one implies symptoms, the other doesn't, something like that). I finished chemo from November 2012 through May 2013, and I've been in remission since. I'm 23. I'm being treated in St. Louis—and based on everything I've read, Dr. Aurer is highly regarded in NYC. Also, what Angela Wright mentioned is spot on; that falls under hematology. Early on, I spoke with Dr. Nemet at Rebro too. Everyone there seems excellent, so it’s probably best for your dad to try them out. And regarding those lab results—don't be afraid to call and pester them until you get what you need; it's the only way. Let me know if you have more questions—hang in there. 🙂

Thank you so much for reaching out.
I went to pick up the results this morning, and the diagnosis was confirmed—Non-Hodgkin, Stage 2A. It was a bit disappointing how they just sent us away once the diagnosis was set—basically telling us we're on our own now—but I suppose that's just how it goes with illness. If you can manage, you have a chance; if not, there isn't much else to say. 😢
Anyway, I'm going to call the hematology department at Rebro immediately to try and snag an appointment.
How long does the treatment last? How did you handle it? Were you staying in the hospital during therapy, or were you at home?

@driftingsurfer14/">@@driftingsurfer14

For my type, they usually go with 6-8 cycles of chemo (CHOP) plus immunotherapy (R)—the R-CHOP protocol—depending on how you respond. After that, maybe some radiation depending on the tumor size. I did 6 rounds of R-CHOP, then 2 more just with R (mabthera), no radiation for me. In my case, one cycle meant coming in for one day. You get the treatment at the outpatient clinic, and if you’re feeling okay (no fever or anything), you just head home right after. No staying overnight in a hospital room. Then you get bloodwork checked about 7-10 days later, and the next round is scheduled 3 weeks after the last one. That said, I've known people with Non-Hodgkin who had to do chemo for 4-5 days straight (you either stay in the hospital or hit the outpatient clinic, whatever works best for you and the doctors), and that was considered one single cycle. So, it sounds like what your dad has is likely that specific type. For mine, it was diffuse large B-cell (I think the code is C83.3), so you should check his results for that specific wording. If he ends up having to do those multi-day sessions, try (please ask) to schedule that first chemo session at the start of the week (like Monday or Tuesday). It makes things way easier later on if everything goes smoothly, so you aren't stuck dealing with the hospital over the weekend when there are fewer doctors and nurses around.

Also, the first day I showed up at the hospital with those results (the exact diagnosis), my doctor ordered a bone marrow biopsy immediately to see if it had spread there. I don't know if it'll be like that for you, since in my experience, they only did that on certain days, but I got lucky and arrived on the right day. You wait about 7-10 days for those results; mine came back to my hematologist, and the marrow was clear. People say the biopsy process is unpleasant, but honestly, it wasn't a big deal for me. They take a sample from the back of the hip using needles. The needles actually popped twice before they got enough of a sample. You get a little anesthesia, and even a nurse assists by holding you steady so you don't move suddenly. The pain is just this dull ache, kind of like falling hard onto your tailbone on a concrete playground 🙂 though I guess it depends on who's doing the procedure and how much it hurts. Afterward, you lie in the outpatient clinic for an hour or two just to make sure there's no bleeding, and then you're out. Within a day or two, the pain is gone and you can sit normally. It might be a good idea to bring your dad with you when you go for the rib/bone stuff, just to get the ball rolling ASAP. If he needs mabthera, he'll have to sign off on the insurance authorization for the drug. Oh, and I don't know how old your dad is, but just a heads-up for anyone else reading this: patients facing chemo have the right to request sperm freezing, and they can ask their hematologist for a referral.

My stage was determined after a PET-CT scan because of how widespread it was, so I assume you guys are headed for a PET-CT too. Your hematologist will give you the referral once you meet them. If you're doing the PET-CT, expect a bit of a crowd (at least it was in my time, especially with all the drama regarding contract extensions with Medicol where their machines were constantly "out of order"), so see if you know anyone who can help speed things up. I had my PET-CT done at Vinogradski, and Dr. Balenovic read the results (she's great, by the way). Not sure if they still do it there. They say it's really important to have someone experienced and solid interpret those images.

Personally, I handled the treatment pretty well. I never once threw up. I think I only took an anti-nausea pill once, on the very first round. There was one period after the 4th or 5th chemo where a cough absolutely wrecked me—this mucus you just couldn't cough up, which made me feel nauseous, though luckily I didn't vomit. You mentally prepare yourself thinking chemo is going to be brutal, but then things end up looking easier and more positive later on. I was hospitalized for about 20 days due to low white blood cell counts, a fever, and pneumonia after my 6th cycle.

hollowridge88 said:Good morning, everyone! So, I just got my cytology results back from the biopsy on my left breast. Since most of this sounds like gibberish to me... I'm back here looking for some help. Microscopic view: 3.5ml of clear liquid was evacuated. Microscopic findings: The sediment showed clusters of apocrine metaplasia cells, phagocytes, plus some intact and hemolyzed erythrocytes. Impression: Apocrine cyst (C2). Honestly, the only thing that gave me any relief was seeing there was no mention of Ca... which I assume is a good sign. Thanks to everyone for the help.

It's a benign cyst, but there’s always a small risk it could turn malignant over a long period. Usually, doctors want to keep a closer eye on those kinds of growths.

Michelle Cook83 said:It’s benign for now, but there is always that little risk of it turning malignant over a longer period of time, so doctors usually keep a closer eye on those kinds of growths.

Thank you so much! 🙂

copperbison4
Kudos on the explanation—I am certain it will be useful, both for me and for others.

My father's diagnosis is: B Non-Hodgkin Lymphoma, follicular lymphoma grade 2 (80% nodular, 20% diffuse).

There are quite a few more abbreviations here, but I still need to study them a bit to understand what they mean.
I called the hematology department at the hospital this morning; they told me to email the results over and said they would get back to me—if I don't hear anything by Monday, I'll give them another call.

As far as I know, Dad (who is 65) hasn't had a PET-CT yet—just an MSCT of the brain and neck, which didn't show anything elsewhere besides the neck—but we'll see if the hematologist orders one. He did have a chest X-ray and an abdominal ultrasound, and all those results came back fine.

Since we aren't based in New York City, if he needs multi-day therapy, we will likely request that he stay in the hospital—though I am hoping for a shorter course so he doesn't have to go through too much trouble.😢

@azaba I noticed you mentioned your mom is on morphine and ibuprofen. I had to jump in and share something that was crucial during my dad's care, though I can't quite recall the exact reasoning right now.

Once he started regular morphine doses via IV, nothing else was administered. Recently, Jane messaged me saying there’s a chronic shortage of those types of IV supplies here in the States.
One thing I remember clearly—the doctor specifically stated that Advil shouldn't be used alongside all those other painkillers (she mentioned this once he transitioned to palliative care). We were all stunned by that. Honestly, I don't even know why she said it, because she didn't give us an explanation then. So, my dad never took Advil while on his other pain meds.
Maybe Jane can weigh in on this? It might be vital for your mother to avoid that specific combination.

To provide some context: my dad was vomiting constantly for over a week. Could it be that taking ibuprofen would have made things even worse for him due to stomach issues??

@ October 14

Since your dad has a different type, I can't really say how things will play out for him. You should probably give this nonprofit a call. Just explain the situation and ask them to mail you some info booklets about the disease, treatment, and diet. They actually sent me three different ones right to my house. One was basically a guide on chemo, the second was focused on "nutrition for patients with blood cancers," and the third one covered Hodgkin’s and non-Hodgkin’s lymphomas from Boris Labar.

silvercanyon7 said:@hollowridge88/">@@hollowridge88 I see you mentioning that your mom is using Morphine and Advil, so I wanted to jump in quickly and share something that was incredibly important during my dad's care, though I can't quite recall the specific reasoning right now.

Once he started receiving regular doses of Morphine via IV drip, he didn't take anything else at all. Recently, Angela Wright mentioned to me that there's a chronic shortage of those types of IV drips here in the States.
One thing I remember the doctor telling us—specifically when he transitioned to palliative care—was that Advil shouldn't be used alongside all those other pain medications. We were all pretty shocked by that, and honestly, I'm not even sure why she said it (since she gave us an answer back then). So, my dad never took Advil while on his other pain meds.
Maybe Angela Wright can weigh in on this, because it might be just as important for your mom to avoid making that specific combination.

To give you some context: my dad was vomiting quite a bit for over a week, so perhaps using Ibuprofen would have made things even harder on him because of his stomach issues?

I'm not entirely sure, but she started with a stronger patch first, which turned out to be too much for her (they actually overdosed her slightly), so they switched her back to the old patch. After that, she was given 375 mg of Tramadol, but it just wasn't helping. We ended up taking her to the pain clinic where they prescribed Zaldiar, but she isn't allowed to use that along with the patch. She was taking 400 mg Ibuprofen, but that felt too weak, so she's moved up to 600 mg Ibuprofen now. She takes Nexium every day to protect her stomach since she deals with gastritis.

What kind of symptoms did you all experience with those lymphomas? It seems like people of all different ages are dealing with this. I always sort of assumed that lymphoma might show up more frequently within a specific age group, maybe younger or perhaps older.

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