NEW-Need some positivity here.

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MissMolly
Posts: 398
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: NEW-Need some positivity here.

Postby MissMolly » Fri Oct 06, 2017 6:36 pm

Teacher2107:
I echo others in encouraging you to consider the overall benefits of a port.

Ports are used by individuals other than those receiving chemotherapy for cancer. Individuals who receive regular IV infusions of Humeria to treat auto-immune Chron’s disease, for example, will often have a port placed. I have had a port now for over three years due to fragile veins and the need for central line access. I consider my port a friend. It saves me from unnecessary needle pokes when I need IV hydration or repeat blood chemistry draws.

Chemotherapy for treating cancer includes cytotoxic drugs. When using IV access of a smaller peripheral vein (not using a port), there is always the risk of unexpected infiltration of toxic medication into surrounding subcutaneous tissue - known as extravastation. The effects can include severe tissue damage and even tissue necrosis. You can Google “extravastation.”

I have been grateful for having a port many times over. Not just for those instances where I knew that I would be receiving an IV infusion, but also for those unexpected occasions where I landed in the ER or inpatient hospital stay. A port has lessened my overall pain and discomfort.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

Aqx99
Posts: 168
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Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Fri Oct 06, 2017 6:51 pm

teacher2017 wrote:
Aqx99 wrote:
teacher2017 wrote:Ok here's the update from the oncologist- I liked her. She was pushing for a port and treatment very two weeks for six months. She wants it straight into my bloodstream and said pills may not be obsorbed enough since so many lymphs were involved. I think I may break down and get the port. She said that if I just did it every two weeks then I wouldn't need pills at all. So it's folfox. I don't have a choice. It needs to be done. She said without chemo there is a 30% chance of reoccurrence. With chemo it drops to 5% - 10%. I'm not playing games. I'm killing this shit. Period.

DH- my emotions are everywhere too. I am going to meet with a social worker soon. I need to get my head together. We will be chemo buddies. Text me anytime.


I absolutely recommend getting the port. I'm only going to do a maximum of 6 cycles and got the port. It is so much easier knowing that they will get it the first time, every time. No fishing around to find the vein. You won't even feel the needle going in because they give you lidocaine cream to put on at home before you come it. Also, it is placed where your jugular vein enters the heart, so your heart acts as the pump that sends the chemo out to your body faster than having to return to the heart from your arm first. I got the port on a Friday and they used it the following Monday. I wasn't able to use the lidocaine cream on it because it was still bandaged, but it still hurt less than a regular needle stick in the arm. Ever since I have used the cream and I don't feel anything when they stick the needle in.

I'd be happy to describe my experience getting the port, if you want. Just let me know.


Yes please tell us. With so many lymph nodes involved, the onc wants it to go into my bloodstream. She said that not absorbing
the chemo pills would not be a good thing.


I was awake for the procedure. They had me mildly sedated, but I was able to talk the entire time. The surgical drape blocked my view, and he also had me looking to the left (my port is on the right side of my chest). The interventional radiologist used a long acting numbing agent on my chest where the port would be placed, it lasts about 10 hours. He used a fluoroscope to guide him as he worked. He made a large incision where the actual port access is below the collar bone, and a small incision above the collar bone to fit the tubing into my vein. He created a pocket in the tissue of my chest about an inch below my collar bone for the port. You can feel the tugging and pushing, but no pain. He also created a sort of tunnel in the tissue on the collar bone so the tubing could go over my collar bone and down into my jugular where it meets the heart. Again, I could feel him pushing the instruments through there, but there was no pain. It hurt for about a week, then I had a sort of heavy feeling after that for a bit. Now I barely notice it unless I bump it with something. In the end, you just have a small bump on your chest that is less noticeable than the actual scars from the surgery to place it.

This is the port I had placed: http://www.bardaccess.com/assets/litera ... de_web.pdf
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Robino1
Posts: 117
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Oct 06, 2017 7:03 pm

I was out totally for my port placement. I was afraid I would be awake and asked the doc. He said I would be asleep. I said "Thank God". LOL
It really depends on the doctor doing the placement. Ask. If you prefer one over the other, they may accommodate you.

My port is on the left. I couldn't sleep on my right side for about a week. Each time I tried to sleep on my right, a strange kinda painful feeling would shoot through my right shoulder. I'm a side sleeper.

I've had the port now for about 4 months and it never bothers me. I do use the numbing agent before each chemo session. Sometimes there is tenderness when they disconnect the pump after 48 hours (5FU) but it goes away fairly quickly.

After I am done with chemo, I will probably elect to keep it for a year or so. That will be something that I will talk to my doctor about.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended ab pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
9/30/17 CEA 109! Going down!

teacher2017
Posts: 91
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Oct 07, 2017 5:05 am

I will get that port even though it's a constant reminder of cancer. I am not looking forward to it. I just want to go back to work and start. I really don't want to lose my hair. I'm scared again.

I have a terrible phlemy cough. Not sure if it's from surgery. My mind is going crazy. I will see a dr this afternoon but really don't want to tell my cancer story again. But I need something. I'm hoping it isn't a collapsed lung...or another X-ray. I need to be healthy going into chemo.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox
Terrified

DonutHead
Posts: 23
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Sat Oct 07, 2017 5:21 am

i worry about my body lacking the ability to fight off cold and infections with a depressed immune system. in addition to all of the other things i worry about as well. there is a cold going around, both if my boys have it and are just about done. however, everytime i hear their little coughs, i get concerned they will be bringing home all the nice little germies for daddy during my chemo. with that and the insomnia that will surely come, considering sleeping in the guest bedroom so that my wife is not constantly traumatized by this chemo ordeal or my kids don’t crawl in to bed and dose me up with their germ of the day when i can least afford it. everytime you turn around there is something else! as much as everyone tells you to leverage your support network, this disease isolates you in so many ways!

get the cough checked! you are right to want to be at peak health going in to this, but regardless you can do this and will do fantastic.
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

Aqx99
Posts: 168
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Oct 07, 2017 5:37 am

teacher2017 wrote:I will get that port even though it's a constant reminder of cancer. I am not looking forward to it. I just want to go back to work and start. I really don't want to lose my hair. I'm scared again.

I have a terrible phlemy cough. Not sure if it's from surgery. My mind is going crazy. I will see a dr this afternoon but really don't want to tell my cancer story again. But I need something. I'm hoping it isn't a collapsed lung...or another X-ray. I need to be healthy going into chemo.


The kind of chemo they give us typically does not make you lose your hair. It might thin a bit, but you shouldn't go bald. My hair has thinned quite a bit since I started chemo, but not so much I avoid going out without a hat on.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Aqx99
Posts: 168
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Oct 07, 2017 5:41 am

DonutHead wrote:i worry about my body lacking the ability to fight off cold and infections with a depressed immune system. in addition to all of the other things i worry about as well. there is a cold going around, both if my boys have it and are just about done. however, everytime i hear their little coughs, i get concerned they will be bringing home all the nice little germies for daddy during my chemo. with that and the insomnia that will surely come, considering sleeping in the guest bedroom so that my wife is not constantly traumatized by this chemo ordeal or my kids don’t crawl in to bed and dose me up with their germ of the day when i can least afford it. everytime you turn around there is something else! as much as everyone tells you to leverage your support network, this disease isolates you in so many ways!

get the cough checked! you are right to want to be at peak health going in to this, but regardless you can do this and will do fantastic.


Your oncologist will monitor your blood counts closely and let you know when to be concerned about your immune system being dangerously compromised. I just had bloodwork this past week, and even though I am in the middle of cycle #4 my neutrophils came back up into the normal range. My other blood cells were below normal, but not in the danger zone. I wouldn't worry about staying so far away from your family during all of this. You need all the hugs you can get right now!
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Robino1
Posts: 117
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Sat Oct 07, 2017 6:17 am

My hair is thinning but unless you know me and how bushy my naturally curly hair gets, you'd never know it was thinning.
I'm done with treatment 7 and just got the shot to raise my blood count. I also just came down with tonsilitis :? My oncologist prescribes my antibiotics.

5 more to go!

Edited to change shit to shot :shock: :lol:
Last edited by Robino1 on Sat Oct 07, 2017 10:21 am, edited 1 time in total.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended ab pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
9/30/17 CEA 109! Going down!

jep
Posts: 31
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Sat Oct 07, 2017 6:34 am

Hi everyone! My husband is heading into round 5 of Folfox next week....he hasn't noticed any hair loss and he really loves the ease of his port....we are school teachers and we have 2 elementary aged children....he's careful and washes his hands constantly, but I don't see how anyone can avoid germs completely...we're trying to be cautious but not make ourselves crazy....we're actually away for the long weekend....feels so good to get away!
Strength and prayers to all!
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR

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susie0915
Posts: 308
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sat Oct 07, 2017 9:00 am

I naturally have fine hair, and I never noticed losing any hair during treatment. Also, you're blood will be drawn every week so your oncologist
will add supplements where necessary. My hemoglobin was a little low, so I took ferrous sulfate and continue to this day. Also, I know there was a time
she gave me potassium as I would get diarrhea so would lose potassium. My blood levels were pretty good during treatment. I did treatment during the
Michigan winter and didn't have any problems with getting a cold. I did get a flu shot after surgery before starting treatment. You may want to ask your
doctor if that would be okay. It might help build some immunities to any nasty viruses out there.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder
7/17 no change lung nodule
10/17 Clear CT

benben
Posts: 214
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: NEW-Need some positivity here.

Postby benben » Sat Oct 07, 2017 9:54 am

I did have hair loss, while not complete I'd say about 25% thinning. Mostly in the typical top section that males generally lose.
I chose to shave it off after 2 sessions of Folfox as it was coming out in handfuls in the shower and on my pillow.
Just figured shaving would make it easier and it did. I had enough to deal with, with Neutropenia after first session.
I did have lots of WBC boosters as well, which one side effect is hair loss. So between the OXI, 5FU and growth factors my hair didn't stand much of a chance.
However it does come back, as after dropping OXI at treatment 7 my hair has come back with vigor and starting to fill in with new follicles.

I understand your wanting to distant yourself from the cancer story, but it has now become a part of you and will be forever.
It's part of your story and by embracing and accepting the circumstances you might feel loads better than trying to push it away.
Just do what you got to do to rid yourself of the disease one step at a time and eventually, hopefully, you'll be disease free and happy.
Whenever I started to feel bad about my condition, I thought of all the elderly people in chemo and how devastating and how much more difficult it was for them than myself.
There is loads of cancer stuff to take care of from here on out. Even dealing with insurance etc.. I really thought about the elderly and wondered how much harder it must be on them.

best wishes.
----------------------
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
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

teacher2017
Posts: 91
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Oct 08, 2017 9:55 am

Ok I finally went to the dr about this cough. And low and behold, bronchitis. She gave me a z pack and an inhaler. I tried to call the onc to see if it's ok to take 16 days after surgery but no call back. I think I have no other choice but to take it. How the hell did I get this?
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox
Terrified

DarknessEmbraced
Posts: 2795
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: NEW-Need some positivity here.

Postby DarknessEmbraced » Mon Oct 09, 2017 10:10 am

Bronchitis is awful!*hugs* I'm so sorry and hope you feel better soon!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

teacher2017
Posts: 91
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Oct 09, 2017 2:33 pm

Just when I think my attitude has changed I decide to read more topics on this site. It really depresses me and makes me worry. I have so many lymph nodes involved even though hey were removed- I have a lot of nerve thinking this won't spread. Should I really be optimistic? Nothing in this world is guaranteed but I really am angry at this situation. I don't think anyone deserves this feeling and anxiety. I think I really need to start treatment to feel in control. But how can I look forward to nausea, possible hair loss, neuropathy. Etc?!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox
Terrified

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susie0915
Posts: 308
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Mon Oct 09, 2017 2:52 pm

You definitely will feel more in control when you start treatment. I understand you anger. I still worry. I have a 6 month scan next Monday so anxiety is
setting in. There are so many on this forum with lymph node involvement that are doing very well. I cannot tell you not to worry. Please try to have positive thoughts as difficult as it can be. On a side note, how is your bronchitis? Hope you are feeling better.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder
7/17 no change lung nodule
10/17 Clear CT


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