Port side of neck tender - Should I be concerned about blood clot?

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benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Wed Aug 23, 2017 2:14 pm

Monday, I woke up with some slight pain in my right side of the neck.
My port is also right side. The pain is up higher like 2 inches or so from where the tube of port goes into the vein.
I went to my cancer center yesterday and saw the triage nurse. She didn't think it was blood clot as there is no significant swelling or bulging of veins.
She thought it may be a mild infection - which is a concern given I've been neutropenic for 12+ weeks now. I also am low in platelets - so was wondering how I could have a clot if platelets are low.
She said the tonsil on that side seemed slightly larger than the other. My tonsils have shrank during chemo - to about half the size they used to be, and after every session it seems my throat becomes red,
while the rest of my mouth gets white - like thrush. The magic mouthwash did wonders during treatment 6-7. But It goes fast and costs 52 bucks a bottle. I got more prescriptions for it though as it knocked out
all the mouth sores I had as well as the white thrush like areas became more normal pink. At any rate I have read a lot about people with ports getting clots with similar symptoms. So I'm concerned.
Nurse conveyed ONC didn't want to do anything for the time being - just to monitor it, since they think its more likely to be infection than clot and I don't have a fever. My throat doesn't feel sore at all.
Should I be demanding an ultrasound or scan to suss it out completely?
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby veckon » Wed Aug 23, 2017 2:56 pm

Oxi gave me almost permanent thrush (My only infection related hospitalization during chemo ended up being from, get this, a thrush infection), so what you are describing sounds very familiar. If they examined port and see no reason for concern, i’d Suspect thrush too. You probably need anti-fungal oral medication. If the thrush is affecting your esophageal tract you will get one you have to swallow. Mine was banana flavored. Or at least that’s what the bottle said, I still maintain it was liquid vomit. :lol:
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Thu Aug 24, 2017 2:04 am

veckon wrote:Oxi gave me almost permanent thrush (My only infection related hospitalization during chemo ended up being from, get this, a thrush infection), so what you are describing sounds very familiar. If they examined port and see no reason for concern, i’d Suspect thrush too. You probably need anti-fungal oral medication. If the thrush is affecting your esophageal tract you will get one you have to swallow. Mine was banana flavored. Or at least that’s what the bottle said, I still maintain it was liquid vomit. :lol:


Thx for the reponse Veckon.
When you developed thrush infection did you get neck pain like I'm describing.
The tenderness is surrounding my jugular mostly. It spread a little - yesterday it was a central point today its pretty close to all the way from collar bone to chin on the right/port side.
I get thrush every time I get the chemo. The magic mouthwash has antifungal and anti bacterial properties in it. It seems to really help with that.

Anyhow if I wake up tomorrow morning and its still the same or more I'll request an ultrasound to rule out possible blood clot before proceeding further chemo.
I get my first of 3 zarxio shots tomorrow morning - so I'll request the triage nurse and tell her I don't want to proceed until we know there is no clot and what the hell is causing the tenderness to that area of the neck. If it is a blood clot, I'll probably have to have the port removed, but with low ANC and platelets I may have to wait until I can actually heal from the surgery.

I'd like to wake up tomorrow and pain be gone. I'll hope/pray for that again tonight.

Hope you're doing well Veckon.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby veckon » Thu Aug 24, 2017 6:43 am

I would say have them ultrasound if pain doesn’t go away. I did get pain in the neck and throat area, but if it is unusually persistent or seems questionable, definitely have them take a closer look. Will make you feel better too if nothing is wrong. Another complication I faced is that the amount of stress and anxiety this causes us can manifest as additional pain and irritation in the throat. For example, it became difficult to swallow, and it didn’t get better when I stopped FOLFOX. That only improved after I began focusing on reducing stress and anxiety, but there is no magic cure.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby jhocno197 » Thu Aug 24, 2017 11:46 am

I second the suggestion of ultrasound.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Thu Aug 24, 2017 12:04 pm

Thanks Guys,

I just got my first Zarxio, and talked nurse and ONC into an ultrasound.
They are scheduling it and should get a call in next hour or two about when and where.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby Shana » Thu Aug 24, 2017 3:37 pm

benben wrote:Thanks Guys,

I just got my first Zarxio, and talked nurse and ONC into an ultrasound.
They are scheduling it and should get a call in next hour or two about when and where.



Sorry to hear that you're having port issues, hopefully the sonogram will be negative for a clot and you can keep your port. It's great how you advocate for yourself, you know your body best and when something isn't feeling right. Hope the Zarxio injections are kind to you this week!

Stress is definitely a way of life lately, it's hard to relax and try to pretend that everything is okay. I think my family is just tired of riding on my roller coaster, they are supportive but I know they miss the mom I used to be... I've been cooking more dinners lately to try and restore some "normal" to our lives. This forum has been my go to place when I need to vent or offer support to others, I'm very thankful for that.

Take care,
Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Thu Aug 24, 2017 5:34 pm

Shana wrote:
benben wrote:Thanks Guys,

I just got my first Zarxio, and talked nurse and ONC into an ultrasound.
They are scheduling it and should get a call in next hour or two about when and where.



Sorry to hear that you're having port issues, hopefully the sonogram will be negative for a clot and you can keep your port. It's great how you advocate for yourself, you know your body best and when something isn't feeling right. Hope the Zarxio injections are kind to you this week!

Stress is definitely a way of life lately, it's hard to relax and try to pretend that everything is okay. I think my family is just tired of riding on my roller coaster, they are supportive but I know they miss the mom I used to be... I've been cooking more dinners lately to try and restore some "normal" to our lives. This forum has been my go to place when I need to vent or offer support to others, I'm very thankful for that.

Take care,
Shana



Thanks Shana,

I've been under stress for sure, but for the most part - my work has kept me focused on something other than cancer, albeit there is still a lot of energy and time spent on keeping myself infection free.
The ultrasound tech said she saw no signs of clot, and that hopefully what I'm experience will go away in a few days. I did get results back from the ultrasound specialist, while there is no sign of blood clot
They did find one lymphnode enlarged. This can be indicative to either infection or cancer spread according to the report. I have not heard back from my ONC yet, but they did suspect infection vs clot given
the redness in the back of my throat and slightly larger right tonsil. I'm really hopeful that this is merely a mild infection that the Zarxio boosts will cure, or that its simply from inflammation due to pulled or stressed muscle.
Definitely an element of fear has entered my mind with this swollen node.

They also saw some other nodes around this one that looked what they called "reactive"

This was the results of report received:

1. Enlarged right cervical lymph node measuring 2.1 x 0.8 x 0.9 cm with abnormal sonographic appearance. Differential considerations include reactive lymphadenopathy secondary to infection/inflammation or lymph node metastasis if there is history of known malignancy.
2. Multiple additional smaller right cervical lymph nodes, nonspecific, probably reactive.

Oh it also suggests a contrast CT scan for further evaluation.

Veckon, curious if you had an ultrasound prior to your hospitalization for thrush infection and if any nodes were swollen?

So while I got some relief that this was not a clot, I got an additional fear of metastasis :cry:
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby veckon » Thu Aug 24, 2017 5:54 pm

So glad you got it checked out. You rule. Glad it’s not a clot. I did have swollen lymph nodes found during hospitalization, and the scan report said something similarly scary, but I actually had an infection from the thrush so that explained it. I am really sorry you have to worry about that now, but I am also glad you got it checked out because if it is anything at all, better to catch it as early as possible, always. My thoughts are with you, please keep us updated.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby Shana » Thu Aug 24, 2017 10:38 pm

Hi Ben,

I hope that this is just related to an infection which can be treated with the proper antibiotics. Stress is part of life, it's just focused differently now. I get CEA and CT Scan anxiety now, I want to know where I'm at but afraid of negative news. It's good that work keeps your mind occupied, I miss working but all the complications that I had earlier this year forced me to take a leave of absence. I don't think I'll be going back since there's too much exposure to the public which I try to avoid.

Hope you feel better soon and further tests are negative for metastasis. Sending you lots of positive thoughts and good karma!

Shana :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Fri Aug 25, 2017 9:44 am

veckon wrote:So glad you got it checked out. You rule. Glad it’s not a clot. I did have swollen lymph nodes found during hospitalization, and the scan report said something similarly scary, but I actually had an infection from the thrush so that explained it. I am really sorry you have to worry about that now, but I am also glad you got it checked out because if it is anything at all, better to catch it as early as possible, always. My thoughts are with you, please keep us updated.


Thank you Veckon for sharing this with me. It took a load off my fears. Of course they are still there, but at a lower level.
I had a good night of sleep. I went to bed with mild fever 99-100 range, and woke this morning to no fever. Could have been zarxio - first couiple times with granix I had fever.
The tenderness seems a little less this morning as well. Maybe todays zarxio will help whatever infection I might have be knocked out.
I never got a call from my ONC, so will also request his input on the ultrasound report and his plans for surveillance on the matter while I get my second WBC boost.
again thank you for your input. It was very helpful to me :) You rock!

Shana wrote:Hi Ben,

I hope that this is just related to an infection which can be treated with the proper antibiotics. Stress is part of life, it's just focused differently now. I get CEA and CT Scan anxiety now, I want to know where I'm at but afraid of negative news. It's good that work keeps your mind occupied, I miss working but all the complications that I had earlier this year forced me to take a leave of absence. I don't think I'll be going back since there's too much exposure to the public which I try to avoid.

Hope you feel better soon and further tests are negative for metastasis. Sending you lots of positive thoughts and good karma!

Shana :)


Thank you Shana for your support. You're very kind.
I have an online business I started 14 years ago. So I work from home.
If I was not self employed - I would not be working for that very same reason.
I avoid people/crowds whenever I can. I sat for 1.5 hours yesterday in hospital lobby waiting for the ultrasound - donning an N95 mask.
If I need food, I take my son to the store and hand him my credit card and list of things to get.
My son also helps pull the load with my work - so that's a big help and he gets rewarded with money and new computer parts.
Most days I work about 3-4 hours on the business. Some days its a full 8-12 hours.
I try to always keep ahead of things just in case something comes up that I'm not overloaded afterwards.

Thank you for the positive vibes/thoughts - etc.
I'll send them right back at you :)
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby MissMolly » Fri Aug 25, 2017 10:53 am

BenBen:
I have been reading your posts and notice your legitimate concerns for infection owing to low WBC and neuropeotic. I share with you a severely compromised immune system, mine owing to bone marrow suppression effects of long term corticosteroids.

I do not wear facial/air particulate masks when I am out of the house. I do avoid congested public venues. I choose a seat in the hospital waiting area that is far to a corner or outer edge of the waiting room, or I stand in an adjacent hallway. I grocery shop at Whole Foods for its quality of food sourcing.

The most important means of keeping yourself free from secondary infection is through hand washing and keeping hands away from your face - particularly keeping your hands away from your eyes, nose, and mouth. Bacteria have to have a portal of entry into the body. For people who are immunosuporessed, it is imperative to keep one's hands away from one's face.

There have been varied studies that have monitored how many times people touch their face in the course of 15 minutes. Reports of 30 + hands to face contacts. A scratch of the nose. A rub to the corner of an eye. Smoothing and combing of hair with the fingers. Resting the chin in the palm of a hand.

Your number one defense against infection is avoiding touching your face with your hands + thorough hand washing.

I have taken these two practices to heart myself in being mindful not to allow bacteria to find access via my eyes, nose, and mouth.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

skb
Posts: 50
Joined: Tue Mar 28, 2017 2:00 pm

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby skb » Fri Aug 25, 2017 2:35 pm

I had the port placement surgery last week (8/17/17 Thu) and the first infusion the same day.

My right side of the neck also felt tender earlier this week. I ignored it thinking it is must be from the port and the incision they made to watch the procedure through a scope. It is not bothering me now.

If I were you, I would call the clinic nurse.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19, 12/19, 4/20, 7/20- Clean CT, MRI, NED

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby benben » Sat Aug 26, 2017 12:12 am

MissMolly wrote:BenBen:
I have been reading your posts and notice your legitimate concerns for infection owing to low WBC and neuropeotic. I share with you a severely compromised immune system, mine owing to bone marrow suppression effects of long term corticosteroids.

I do not wear facial/air particulate masks when I am out of the house. I do avoid congested public venues. I choose a seat in the hospital waiting area that is far to a corner or outer edge of the waiting room, or I stand in an adjacent hallway. I grocery shop at Whole Foods for its quality of food sourcing.

The most important means of keeping yourself free from secondary infection is through hand washing and keeping hands away from your face - particularly keeping your hands away from your eyes, nose, and mouth. Bacteria have to have a portal of entry into the body. For people who are immunosuporessed, it is imperative to keep one's hands away from one's face.

There have been varied studies that have monitored how many times people touch their face in the course of 15 minutes. Reports of 30 + hands to face contacts. A scratch of the nose. A rub to the corner of an eye. Smoothing and combing of hair with the fingers. Resting the chin in the palm of a hand.

Your number one defense against infection is avoiding touching your face with your hands + thorough hand washing.

I have taken these two practices to heart myself in being mindful not to allow bacteria to find access via my eyes, nose, and mouth.
Karen


I'm sorry to hear you suffer from immuno suppression long term. I certainly hope that my body will come back to producing on its own after all the chemo.

I do know that handwashing and avoiding touching of the face is one of the number one things to do. I do find myself touching my face occasionally and keep training myself to not.
I used to have a habit of biting my nails. Now with chemo and neutropenia seems I've cured myself of that bad habit entirely. Yaye.
According to lists I've found online from neutropenia facilities/research there is a long list of things to do.
I wash my hands probably on the order of 100 times a day. Always followed by antibacterial lotion.
I obsessively wipe down things with antiseptic wipes. I also spray lysol disinfecting spray on our shoes and around the house periodically.
I avoid raw foods, nuts, etc as they all probably are housing some form of bacteria that normal individuals can handle, but not the neutropenic.
It really is alot of extra work. I can't imagine it being long term.

I've been applying vaseline to my nose as suggest by a nurse for eliminating nose bleeds.
While it's worked quite well, I've also read that vaseline can be an environment for bacteria to live.
I'm careful with it. I use qtips instead of my fingers to apply it.

I do wear n95 masks when I go to the cancer center or hospital. Every time I go I note that someone is coughing and go to the far side of the room from them.
The n95 does well at protecting from ejected elements of cough/flem/etc as they form a good seal. The regular hospital masks have large area on the sides that allow outside air in.

So yeah, I'm probably borderline obsessive about it. The infection I had/have or whatever was probably brought on by the thrush that oxi seems to induce me with each treatment.
The magic mouthwash does wonders at eliminating it, but it seems to reappear every chemo session. I also had some cracking in the corners of my lips, which is indicative of fungal infection. That's cleared up with use of the magic mouthwash. Unfortunately I don't know for certain if I had/have infection as my cancer center doesn't seem worried about it, so I'm not getting any antibiotics or antifungal medicine - except for the antifungal properties in the magic mouthwash.

Last night i had a mild fever ranging from 99-100, but woke with none. So when I went for zarxio shots all my vitals were in normal range. They basically told me we'd just push through with the next chemo treatment unless I have further symptoms. So its a watch and monitor thing. One good thing is that the tenderness decreased today. It's still mildly there if I touch the area but isn't like it was the day before with being very sensitive.


sreekanth wrote:I had the port placement surgery last week (8/17/17 Thu) and the first infusion the same day.

My right side of the neck also felt tender earlier this week. I ignored it thinking it is must be from the port and the incision they made to watch the procedure through a scope. It is not bothering me now.

If I were you, I would call the clinic nurse.


I also had some neck pain after the install that lasted about a week. It was similar to what I'm experiencing the last few days, but my port was installed 4 months ago.
I was told by my onc that the port could cause internal infection and its possible to not even be aware of it as the infection would be on the internal skin. I've also read that some individuals immune system will attempt to fight the materials in the port as intruders - causing infectious like reactions. So there are many things that can develop into infection.


I didn't get any plan from my ONC unfortunately as the nurses said he was out of the office, probably with a patient.
So I am just in monitor phase, watching my temps, blood pressure, and other symptoms such as a mild nasal drip and liquid bowel movements.
I'll know more Tuesday when I have pre-chemo appointment with him.

thanks all for advice, personal experiences, and support.
This place is great :).
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Port side of neck tender - Should I be concerned about blood clot?

Postby MissMolly » Sat Aug 26, 2017 5:00 pm

BenBen:
I do not find fault in you being as meticulous as you are in keeping yourself free from possible contaminants. It is a natural response when you are told that you are immunosuppressed. Routine germs and microscopic "bugs" loom larger than life because the reality is that an overdose routine infection can become life-threatening.

Keeping your hands away from your face is one of your best defenses. Any errant bacteria needs to find a way into your body to establish an anchored presence. The eyes, nose, and mouth are ready entry points.

Instead of vasoline, I recommend coating the nasal passageways with an over the counter antiseptic gel/creme - Neosporin or Polysporin are both quality antiseptic agents. I routinely place a dollop of Neosporin on a Q-tip and lubricate the entryway of each nostril. I do this 2 x a day, more or less as needed.

Our mouths' house a cornocopia of bacteria, viruses, and yeast. Millions of microscopic "roommates." In looking to minimize risk of microscopic bacterial and yeast overgrowth and/or infection, it is also imperative that you give added attention to maintaining good oral hygiene.

Oral swishing with warmed salt water is a tride-and-true methodology to keeping a clean and healthy mouth. The salt lowers the Ph balance of the saliva and makes the mouth less hospitable to bacteria/yeast. Swishing with warmed salt water also helps irrigate under the gumline (prime real estate for bacteria).

Chewing cinnamon gum with xylitol has been clinically shown to reduce bacterial and yeast colonization in the mouth. Cinnamon has antibacterial properties. Xylitol also has mouth healthy properties. "Sprye" is a brand of xylitol-based chewing gum recommended by the American Dental Association. Sprye also makes toothpaste, mouthwash, and mints.

Maintain a good partnering with your dental hygienist and dentist, maintaining good oral hygiene (teeth and gums). When my immune status has been dangerousky low, my hygenist employs ultrasonic cleaning + water irrigation for my routine cleaning rather then the standard cleaning + scraping (which is higher in risk of releasing bacteria from under the gum line). I also take prophylactic Amoxicillin (500 mg x 4 tablets) one hour prior to a routine cleaning. You will want to discuss a prophylactic antibiotic with your dentist and oncologist. The antibiotic wards against bacteria under the gum line dislodged during routine cleanisngs, bacteria that travel through the bloodstream and settle in the heart valves.

My bone marrow has been permanently suppressed due to medications to combat an auto-immune condition (mixed connective tissue disorder, related to Lupus). I tradded one problem for another problem. I do not see you having long-term marrow suppression. I would be optimistic that your bone marrow function will return once your chemotherapy is either discontinued or the dosing of the platinum-based drugs has been lowered. The liver and bone marrow are two body organs that have a powerful ability to recover and rejuvenate.

The concern raw fruits and vegetables is bacterial or other microorganism that may be on the outer surface or skin. I never eat a raw veggie or fruit with its skin. I peal or cut all outer coverings. Ex. Eat slices of apple where the skin has been completely removed and the cutting knife and cutting board cleaned to prevent cross contamination. Ex. Be particularly careful of summer melons (honeydew, cantaloupe), as bacteria are often in outer shell and the small dimples. A knife cutting into the melon can transfer bacteria from the outer surface to the fleshy body of fruit. Ex. Bananas are a safe fruit when pealed, wash your hands after peaking the skin of the banana and before eating.

Be aware of your immediate environment around you, keep counter surfaces and phones (mouth pieces) clean by using disposable antibacterial wipes. Avoid large crowds and congested venues. Get plenty of rest to support your immune system recovery. But certainly feel comfortable hugging your children and cuddling with a beloved pet.

My intention of this post is NOT to overwhelm you with do's and don'ts but rather to give you a few new ideas or practices that give you a sense of proactive control when living in a body space which has low immune support. You will be OK. You will be able to see this through.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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