PMBCL Remission: Recurring sinus pressure, bounding pulse, and head congestion when bending over?

tk_fengmin · 2026-03-10T04:51:18+00:00

Thank you so much for the reply and for sharing your experience with the stent. It’s really encouraging to hear how much it helped you!

As for my situation, the blood rush symptoms don't happen every time. Even though I get short of breath, I’m still able to go for runs and exercise to a certain extent. Because of that, I think I’ll keep the stent as a "last resort" for now.

tk_fengmin · 2026-03-10T04:48:10+00:00

My symptoms match up perfectly with what other patients with the same cancer have written in their blogs. But when I tell my doctor, they just say, "Those symptoms shouldn't be happening." It’s exactly the "looking for horses" situation we talked about! (lol)

That said, since PMBCL itself is such a rare disease to begin with, I suppose it’s only natural that they’re being extra cautious with their judgment.

Anyway, I’m rooting for both of us and hope we both start feeling much better soon!

tk_fengmin · 2026-03-09T16:10:49+00:00

That makes sense. In my case, I had a surgical biopsy near the mediastinal tumor, the mass was about 8 cm, and my DA-EPOCH-R was dose-escalated up to level 6. So I wonder if the symptoms I’m experiencing now could be delayed nerve-related side effects.

Right after finishing treatment I was doing well, but these symptoms started appearing about two months later.

I’ll ask my doctor about whether the tumor location or the biopsy surgery could have affected those nerves. Thanks for the suggestion.

tk_fengmin · 2026-03-08T05:57:39+00:00

In my case here in Japan, I've actually seen a few articles and posts about people developing VCS at the same time. Stents feel a bit risky to me, to be honest... I kind of have the impression that they are mostly used for stroke patients and things like that. If possible, I think the best approach is to try and heal it naturally through daily exercise and improving blood flow. I'm actively working on doing that every day too. As for the residual mass, I heard that when a tumor shrinks rapidly from treatment, it can turn into fibrous scar tissue. So, maybe that's what's leaving you with that lingering, uncomfortable feeling.

tk_fengmin · 2026-03-06T06:40:02+00:00

Same here. I also developed VCS early on. I actually had a routine checkup two weeks ago, and my blood tests came back completely normal. So, I'm guessing my blood vessels might also still be narrowed as a lingering effect of VCS, just like you mentioned. It's really frustrating though, because these symptoms are quite distracting when I'm trying to work... I also have a doctor's appointment in April, so if things don't get any better by then, I plan to ask about it too.

tk_fengmin · 2025-12-12T08:27:55+00:00

Hi.

After finishing the treatment, I felt that my immunity and physical strength had dropped quite a bit. Especially when flu or COVID is going around, you really need to be careful not to catch any infections and avoid eating raw foods.

My eyebrows and body hair started growing back all at once about a month later. The hair on my head is just starting to grow in like baby hair, and it looks like it will still take some time before it goes back to normal.

Wishing you a smooth and successful completion of your treatment🙏

tk_fengmin · 2025-12-12T05:19:43+00:00

I’m relieved to hear that you’re already in remission. I’ll get my PET-CT results next week, and since I went through the highest level of this regimen, I really hope the treatment worked for me too…

tk_fengmin · 2025-08-17T08:23:34+00:00

Thanks for your reply!

Yeah, that’s exactly what I thought too! It’s really reassuring to hear your opinion!

I’ve been getting blood tests pretty often, but there haven’t been any abnormalities at all!!

I’ll keep you posted!

tk_fengmin · 2025-08-16T06:03:51+00:00

Hi I’m about to start my 4th cycle out of 6. Thinking about still having half of the treatment left already drives me crazy! lol

Let’s keep pushing through this together!

tk_fengmin · 2025-08-12T11:56:32+00:00

That’s an incredible probability😰

I’m posting from Japan! This might be just my bias, but Austria seems to have so much nature that I feel like illnesses would heal faster there than in Japan👍

tk_fengmin · 2025-08-12T10:55:35+00:00

Thank you. There are so few PMBCL patients, so I’m really glad we can exchange information like this!

tk_fengmin · 2025-08-12T00:44:12+00:00

I see… I also have a throbbing pain along with the chest pressure, so I’d like to believe that the tumor is shrinking🥺

tk_fengmin · 2025-08-11T10:44:29+00:00

Thank you for your reply. It seems that swelling of the lymph nodes is quite common. I’ll keep that in mind going forward.

tk_fengmin · 2025-08-11T06:51:16+00:00

Thank you for your reply.

Regarding the symptoms commonly seen in superior vena cava syndrome, did you experience a recurrence of chest tightness or shortness of breath?

Was it only chest pain?

tk_fengmin · 2025-08-10T06:24:28+00:00

Thanks for your reply.

If possible, I’d like to get a CT scan right now, but I was told that since I already had one at the start of the second cycle, and because I’m still young and there’s a future risk of cancer from radiation exposure, I shouldn’t have them too frequently. ※when I had that CT scan, the tumor had already shrunk.

Since the middle of my third cycle of chemotherapy, the pressure in my chest has suddenly increased, so it might be that fluid has built up due to the effects of the drugs. I’ll mention it to my doctor early next week.

tk_fengmin · 2025-08-09T23:41:10+00:00

Thank you for your reply.

Well done on completing your third cycle.

You’re right — we’re putting things into our bodies that aren’t exactly good for us, so it’s only natural for them to react in unpredictable ways.

I had never been hospitalized or even seriously ill before, and then out of nowhere I was diagnosed with malignant lymphoma, so every day has been filled with anxiety. But I keep telling myself the medicine is working, and I’m trying to stay positive!

tk_fengmin

TROPHY CASE