Anyone pass out after abdominal cramping??? ER time

[kandj]

I am glad your husbands blood labs look better. I bet he is feeling so much less tired. I lost a lot of blood with a hematoma when I was pregnant with my 2nd child. Would lose about a pint every 6 days in these bleeds. Went on for weeks. It was so exhausting (and terrifying).

We were told that my husband has a follow-up appointment with Dr. DA on Monday, the 27th, which is noted on his discharge paperwork.

I would call and double (triple?) check this. Monday is a holiday, although maybe not one observed at MSKCC). Hopefully they aren’t closed and y’all get some answers.

As for the scan report. When DH had his liver abscess following his extensive liver resection, the radiologist noted all kinds of things that weren’t an issue. (Edited to add: this was done at our local hospital as we had flown home about 10days before. Never going to that hospital again! They lost the fluid from when they drained his abscess too so we never knew the exact bacteria that caused the abscess. Led to 3 extra weeks of iv antibiotics. Nightmare.) They had nothing to compare against so it led to a confusing read. The abscess was pretty obvious though, thank goodness. Resection fluid pockets, a hematoma, and a cyst where marked as suspicious for Mets. Obviously they weren’t. Hopefully his next MSKCC scan will clear that up. Dr. K has specific sites to get the scans done even within MSKCC for the express purpose of continuity. I wouldn’t think it should matter, a CT is a CT. But I guess it does. Maybe an MRI of his liver would be in order too. I know my DH’s liver Mets show up way better on MRI.

[Gravelyguy]

I was thinking on the same lines as Kandj. Our local hospital did the first post resection scans and after three different scans including a PET scan, were convinced that I had a recurrence. They don’t do liver surgeries so sent me back to Mayo. Mayo did their own scans and everything that my local radiologist saw was actually just the after effects of the liver surgery. They only had my initial base line scans to compare to at home.

I now only have scans done at Mayo. It is worth the drive to have consistency.

Hopefully everything they noted is just a byproduct of the surgery and the aftermath of stuff floating around in there.

Praying for you guys,

Dave

[NHMike]

I was thinking on the same lines as Kandj. Our local hospital did the first post resection scans and after three different scans including a PET scan, were convinced that I had a recurrence. They don’t do liver surgeries so sent me back to Mayo. Mayo did their own scans and everything that my local radiologist saw was actually just the after effects of the liver surgery. They only had my initial base line scans to compare to at home.

I now only have scans done at Mayo. It is worth the drive to have consistency.

Hopefully everything they noted is just a byproduct of the surgery and the aftermath of stuff floating around in their.

Praying for you guys,

Dave

I learned a lot from this post. Thanks. It would be far more convenient to do them locally but my surgeon and oncologist like it done at their hospitals.

[mpbser]

Thanks for the reassuring words. I don’t like all this waiting but there isn’t much I can do about it. An appointment with Dr DA was posted to the portal tonight: June 3rd. There has been a two-month CT scan up there for June 6th, but I don’t think we will go to that. Dr DA had said that it would take “weeks to a couple months” for the blood to be reabsorbed. It will be three weeks as of June 4th, so we are not sure if Dr K would be satisfied with that amount of time. If it is enough time, then we will need it to be scheduled back to back with Dr DA appointment.

We will see what she recommends, assuming we hear from her office between now and closer to June 3rd.

[mpbser]

My husband and I are not comfortable with him restarting chemo until we get a clear picture of what is going on inside him, for lack of better words. For some reason, however, the portal still contains chemo appointments, and one is even prior to the scan that had been scheduled for June 6th (on the afternoon of June 3rd after the follow-up appointment with Dr. DA). Either this is just the schedulers leaving the appointments as they were as they had been scheduled well before any of this crisis happened or this is office dysfunction. I also had to remind them, yet again (5th time now), that my husband gets MRIs for liver surveillance and CTs for chest and pelvis.

My husband has set a threshold of at least 14 for what he wants to see his hemoglobin to be before moving forward:
12/26 15.2
2/25 14.8 (pre-surgery and HAI pump placement 3/7)
3/7 13.1 (post-surgery and HAI pump placement on 3/7)
3/8 13.2
3/9 12.1
3/10 12.0
3/11 11.3
3/12 11.6 (discharge from MSK)
3/20 12.7 (pre-chemo check)
3/20 12.6 (2nd lab that day because platelets were elevated as were neutrophils and white blood cells in the earlier lab that day. They remained elevated in the 2nd lab and Dr. K also took cultures and urinalysis. Interestingly, the urobilinogen was 11, which is the top threshold of the range. Because the urine bilirubin was negative and the urobilinogen was at this level, it appears that he was exhibiting signs of hemolytic issues:
https://www.labce.com/spg506382_clinica ... urine.aspx We were offered a follow-up CBC and CMP to do locally when we got home, but they said if he was felling okay, we could just skip it which we did.)
4/1 12.4 (pre-chemo check before 1st HAI FUDR 4/1)
4/15 13.2 (pre-chemo check before 1st folfiri treatment 4/15-4/17)
4/29 11.2 (pre-chemo check before 2nd folfiri treatment 4/29-5/1)
5/6 10.5 (pre-chemo check before 2nd HAI FUDR 5/6)
5/13 Labs at local hospital while hemorrhaging. Received one unit of blood at local hospital, then one unit of blood at Albany Medical Center where he was transported via ambulance at 3am
5/14 7.9 (Received one unit of blood during MSK interventional radiology procedure to place stent in GDA)
5/14 9.2 (check in PACU, showing post-infusion bounce)
5/15 8.9
5/15 8.8
5/15 7.7
5/15 7.8 (here is when I got upset that they were talking about discharge 5/17 with this low of a Hg)
5/16 7.1 (this morning was when I got a bit worked up about the prospect of a 5/17 discharge with continual downward drift.)
5/16 9.0 (gave 1 unit of blood, this is the post-infusion bounce)
5/17 8.6 (the drop made me nervous, even though I understand that there can be drift down after bounce up)
5/18 9.0 (Relief. He was discharged this day after this lab.)
5/20 10.3 (follow-up labs at MSK-Westchester. More relief. The rest of bloodwork looks great, too, except RBC and hematocrit still low which is to be expected.)

[radnyc]

Let the people at MSK do their jobs.

[mpbser]

Oh, shut up.

[kandj]

My husband and I are not comfortable with him restarting chemo until we get a clear picture of what is going on inside him, for lack of better words. For some reason, however, the portal still contains chemo appointments, and one is even prior to the scan that had been scheduled for June 6th (on the afternoon of June 3rd after the follow-up appointment with Dr. DA). Either this is just the schedulers leaving the appointments as they were as they had been scheduled well before any of this crisis happened or this is office dysfunction. I had to remind them, yet again (5th time now), that my husband gets MRIs for liver surveillance and CTs for chest and pelvis.

)

My DH’s appointments say chemo suite treatment. And that is just for flushes of his port and the glycerol in the pump. Could just be a place holder for a flush. I would not want him to resume chemo either until he had an appointment with Dr. K. So he has an appointment June 3 with the surgeon, cancelled scans on the 6th. When does he see Dr. K again? I assume the chemo y’all are talking about is systemic. His pump is currently non functional, correct?

[mpbser]

Oh, no.... it wasn’t just a placeholder. Just wait until you hear what happened. I will write more over the weekend. [UPDATE: I'm not going to share what happened, for now. Keeping that in my back pocket.]

The pump is dead and cannot be resurrected, so we are talking about systemic.

The next Dr. K appointment that has been scheduled is for June 10th, so her intention was to have him restart chemo a week before seeing her or having a scan.

As described above, my husband set the terms for restarting chemo, and I was the messenger. Let's just say for now that I don't appreciate being subjected to "killing the messenger." More to come, I promise.

[mpbser]

Without getting into "what happened" as that's a long story, here's more information about the situation.

So, my husband experienced a massive scrotal hematoma as a complication of the catheterization that they did at MSK Tuesday, May 14th to place a stent in his gastroduodenal artery [hepatic] (GDA). A scrotal hematoma occurs when the stick is at or very close to the inguinal ligament, with blood tracking along the spermatic cord into the scrotum. What happens is that the blood pools into the scrotum from the access of the femoral artery.

My husband was told by one fellow that the swelling would go away in a few days and by another a few weeks.

Apparently, access site bleeding for femoral access occurs in 0.82% of cases. What luck we have!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469436/

As the paper linked above states, treatment of scrotal hematoma ranges from conservative measures, "including scrotal elevation and resuscitation with IV crystalloids or blood products, to open surgical options. Ultrasound-guided compression and ultrasound-guided thrombin injection are noninvasive measures that are effective for femoral artery pseudoaneurysms, but these measures are unlikely to be effective for unrestrained obvious bleeding. Endovascular balloon tamponade is a minimally invasive option that is frequently successful and offers the option to use covered stents in case of failure." My husband's has been "treated" only with scrotal elevation and it has much longer to go to subside.

Causes of access site bleeding include multiple sticks, back wall stick, failure of the closure device, or residual bleeding from the initial site.

As all can see above, I was concerned about continued bleeding after my husband's GDA was stented. Yesterday, I was looking at the MynxGrip Vascular Closure Device Patient Brochure Guide to Vascular Sealing that was provided to us. I have read it carefully and am assured that there was no failure of the closure device as he has none of the symptoms listed on the brochure. However, you are supposed to "keep this card with you for 30 days following your procedure," so that tells me that we need to wait 30 days past procedure before concluding that all is/was well with the closure. June 13th will be day 30.

When someone has this complication, I would think that the medical providers are supposed to confirm resolution. For example, in the case discussed in the link above, "There was gradual reduction in the scrotal swelling until complete resolution was confirmed at follow-up 2 weeks later."

Just wait until you hear what Dr. Kemeny had to say..... this just keeps getting better and better....

[AmyG]

Your husband just can't catch a break! His poor man bits, that's just got to be uncomfortable.

How is his attitude through all of this? Is he feeling okay?

[mpbser]

Hi Amy,

Other than still barely able to walk, he's doing well.

Thanks for asking!

[DarknessEmbraced]

I'm sorry you and your husband went through so much and I hope he feels better soon!*hugs*

[hopefulandstrong]

Sending all good wishes. Thank you for sharing this information. As painful as it is to read -- not mention to experience as both a patient and a caretaker -- it is really informative. And we are happy to be able to send some love.

[LPL]

mpbser, how are you?
Thinking about you. It’s sort of hard to believe that all of this has happened to you and in such a short time!
Warms hugs & positive vibes.