granix extreme bone pain

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susie0915
Posts: 541
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: granix extreme bone pain

Postby susie0915 » Tue Oct 10, 2017 3:30 pm

[
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/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, 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/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Wed Oct 11, 2017 2:03 am

benben wrote:
Shana wrote:Hi Ben,

You're almost there, Ben. Great bloodwork numbers too! I never imagined knowing so much about blood chemistry. Soon you'll be ringing that bell and be showered with gold and sliding down rainbows... okay maybe that was a bit too much haha! I am a bit of a Pollyanna but only to a point, there's a cynical side of me too that shakes itself on occasion. Sometimes that's a good thing because it keeps me smart and savvy, I just need to keep it from bumming me out. So far so good most of the time!

My Chemo was pushed to tomorrow since all the roads I needed to take were either closed or congested due to the firestorm raging here. I'm in Sonoma, just a few miles from downtown plaza. It's very smokey and hazy here and fires are raging north of us, east of us and possibly south of us too. There are too many to keep track of, Santa Rosa has been hit very hard and it's shocking because it's a large urban area. Just tragic! Several large wineries are gone,, they evacuated two of the hospitals north of us. Marin General which is next door to my cancer center has taken a lot of those patients along with other neighboring hospitals. I felt so sorry watching these patients being wheeled out to waiting ambulances or buses depending on their needs. I've been awake since 1am, the fires started late yesterday evening and grew out of control faster than firefighters anticipated.

I've tried to find something to take my mind off of chemo and cancer but this wasn't what I had in mind! I pray for everyone to be safe, that's all that matters now. Wednesday is the "Sailing Heals" event at the San Francisco Yacht Club. It's a yearly event where local cancer patients and a guest are invited to lunch followed by sailing on the SF Bay. I'm usually buzzing for 2 days after chemo so shouldn't be a problem.

Hugs and Rainbows back atcha :D


Hey Shana, I read about those fires shortly after they were started. Rumor is they were started by an arson or arson(s). It's quite terrible.
I thought it was interesting as we just got our air quality back to normal here, and now you're getting what I experienced here for over a month.
I hope you remain safe. Looks like you are quite close to Santa Rosa. Stay indoors. Hopefully it doesn't delay your treatment further. Gotta head to my infusion of leucovorin followed by 5FU bolus infusion and lastly pump hook up. I asked nurse if they fixed the pump from last time as I was injected too quickly and experienced fatigue and low temps. Same nurse that disconnected me. She had forgotten all about it. I certainly hope it's working now or I get a new pump. I didn't care for the worries of the side effects that weren't normally there.

I hope the smoke clears and doesn't interfere with your Wednesday plans to head to the Yacht club. That sounds like a great event with some good excitement.

Happy sailing - sounds like a rainbow for the soul!

Hugs.


Hi Ben,

I hope your infusion went well and the pump operated like it's supposed to, you don't need additional side effects now. You're so close to last treatment, so happy for you!

The fires are bad and humidity has dropped, winds have increased. I decided that it was too close for comfort now and I need to stay home in the event we need to evacuate. I don't want to be sailing on the bay and worrying about it. I canceled earlier tonight and they understood. I will do it next year unless I have the amazing luck to be NED and ineligible! All I can do is hope :D

A month of poor air quality is daunting. They gave us filter masks to take home today during infusion. I met with oncologist, all my bloodwork numbers are NORMAL! I don't know what that means in terms of tumor shrinkage but I know the chemo and my body are getting along finally so I'm very happy. My WBC was 4.4 and that's after no Zarxio. ANC was 2.9, HGT was back up to 11.2 which is just low normal at the lab I go to. I'm feeling steroid ramped up but exhausted from fire worry. Our houseguest count is down to two so things are quieter.

Just going to lay low and maybe go to the gym tomorrow if I get stir crazy! I'm going to get my muscle back and get all buff... well that was a bit of hyperbole but you know what I mean :P

Hugs!!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Wed Oct 11, 2017 9:22 pm

Shana wrote:
Hi Ben,

I hope your infusion went well and the pump operated like it's supposed to, you don't need additional side effects now. You're so close to last treatment, so happy for you!

The fires are bad and humidity has dropped, winds have increased. I decided that it was too close for comfort now and I need to stay home in the event we need to evacuate. I don't want to be sailing on the bay and worrying about it. I canceled earlier tonight and they understood. I will do it next year unless I have the amazing luck to be NED and ineligible! All I can do is hope :D

A month of poor air quality is daunting. They gave us filter masks to take home today during infusion. I met with oncologist, all my bloodwork numbers are NORMAL! I don't know what that means in terms of tumor shrinkage but I know the chemo and my body are getting along finally so I'm very happy. My WBC was 4.4 and that's after no Zarxio. ANC was 2.9, HGT was back up to 11.2 which is just low normal at the lab I go to. I'm feeling steroid ramped up but exhausted from fire worry. Our houseguest count is down to two so things are quieter.

Just going to lay low and maybe go to the gym tomorrow if I get stir crazy! I'm going to get my muscle back and get all buff... well that was a bit of hyperbole but you know what I mean :P

Hugs!!


Infusion was a cake walk. Just about 3 hours, most of that waiting for cocktails to be mixed.
bout 2 hours of actual infusion. Listened to some good music and worked for most part while receiving the Leucovorin.
Bolus is like 15 minutes then get the pump hookup. Felt good, got lots of remarks from nurses telling me how much better I was looking.
Certainly feeling better. Finally saw my CEA report and it went down from 4.5 to 4.3 - not a big movement but going in the right direction.
Hoping that continues as my body starts to regenerate all the dead cells.

I'm really sorry to hear about the smoke doing away with what sounded like a truly fun experience sailing.
I hope you have not had to evacuate your home and that they are getting some control of it. I've heard that even more fires were started.
Hope the gym was good on you. With my counts increasing I may join the gym back earlier than I had planned. Was gonna wait for new years.
Will see how everything pans out on scans and timeline for port removal etc.. I've loved having the port as my veins like to close or move around when being poked.
Like they have a mind of their own. Larger the needle - harder it is. So the port, even though I had one scare with soreness and swollen lymphnode in the neck. It's been a godsend.

Stay positive. Try to find that rainbow in all that smoke.

hugs!
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Oct 24, 2017 10:24 am

I got Blood Work done and still good with ANC of 2.7. No more growth factors.
Got the clear on CT Scan - WOOT! Some fatty tissue build up was found suggesting some colitis, but hey NO cancer!

Today is treatment 12 - Time to RING THAT BELL!
Already feeling way better without Oxaliplatin.
Each day comes with a little more energy and little less neuropathy.
I've even started running, but the tingling sensation in my feet with every stride keeps that to a minimum.

Looking forward to recovery and continual monitoring.
I'll miss seeing the nurses so frequently. They are a great bunch at my center.
Love, love, love them!

Feeling great in many respects.
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

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Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: granix extreme bone pain

Postby Robino1 » Tue Oct 24, 2017 11:03 am

Yay for last session!! ~ Ring that beeeelllllllllllllllllllllll, ring that bell...~
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
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
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

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susie0915
Posts: 541
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: granix extreme bone pain

Postby susie0915 » Tue Oct 24, 2017 1:03 pm

benben wrote:I got Blood Work done and still good with ANC of 2.7. No more growth factors.
Got the clear on CT Scan - WOOT! Some fatty tissue build up was found suggesting some colitis, but hey NO cancer!

Today is treatment 12 - Time to RING THAT BELL!
Already feeling way better without Oxaliplatin.
Each day comes with a little more energy and little less neuropathy.
I've even started running, but the tingling sensation in my feet with every stride keeps that to a minimum.

Looking forward to recovery and continual monitoring.
I'll miss seeing the nurses so frequently. They are a great bunch at my center.
Love, love, love them!

Feeling great in many respects.

Glad you're feeling so good. It's nice to get back to things we used to do before. I've been running even with the neuropathy. I just find the more I move the better it feels. Mine didn't even really kick in until about a month after finishing Xelox. It feels weird but I've gotten used to it. I don't know if the neuropathy will ever totally go away. It's annoying, but really doesn't prevent me from doing things. I'm going to try acupuncture. I'm waiting for an order to be sent from my oncologist to the spa at my cancer center as I will get $400 services free. I'm also thinking of trying dry needling if the acupuncture doesn't work. I'll have to pay for that out of pocket. Congrats on finishing chemo and the clear scan. Enjoy ringing that bell.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/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, 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/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

benben
Posts: 231
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: granix extreme bone pain

Postby benben » Tue Oct 24, 2017 9:59 pm

Thank you Robin and Susie.

Today was a GREAT day.
Started with taking my son to school.
Put in 1.5 hours of work.
Then went and saw my ONC assistant, whom is now a newly full fledged ONC.
Very sweet lady and she explained everything to me. Found out the 2/85 on the CT scan report was related to a pic.
So we pulled it up and showed me were I had some fatty tissue and inflammation going on in the descending colon.
It was not at the anastomosis as I was expecting by more where they cut the colon from the intestines at the turn/juncture.
Probably still related to surgery healing and effects of chemo on that healing process. It sounds as if I won't get a colonoscopy until my annual surgery anniversary.
Until then I'll be getting port flush every 6 weeks. So I'll be seeing those nurses less, but still seeing them. 3 months Onc visits and 6 month ct scan.

Chemo session went fine and towards the end all the nurses came to my little cubical and sang me a wonderful congratulation song.
I was so elated and full of joy I almost cried. They gave me a bottle of non-alcoholic bubbly signed by many of the nurses. It was very uplifting, and got a hug from
the fellow cancer surviving nurse. She's so compassionate.

I packed my stuff and rang that bell!

Picked up my son from school and then went to celebrate at our preferred Thai restaurant with a big bowl of Tom Kha soup and avacado salad roll.
The Tom Kha was probably the best bowel of soup I'd ever eaten.

So grateful to everyone that's helped and encouraged along the way.

Hope to continue to reside in NEDville for life.
Hope to help in various ways in the future.


blessings :)
----------------------
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 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

User avatar
Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: granix extreme bone pain

Postby Shana » Tue Oct 24, 2017 11:31 pm

Yeah Ben!

I can feel your aura glowing as I read your words of relief and happiness! So glad that you were able to ring the bell today and that the nurses helped celebrate your last treatment. It's all going to be fine :D


Hugs and Rainbows!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

User avatar
susie0915
Posts: 541
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: granix extreme bone pain

Postby susie0915 » Wed Oct 25, 2017 7:53 am

Reading about your day and how happy you sound brought tears to my eyes. Sometimes when I think back of my year of treatment it brings tears to my eyes. I don't know why. You would think I would never want to think about it as there were some rough times. Again, congratulations on finishing treatment and continued NED.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/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, 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/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Tdubz
Posts: 94
Joined: Sun May 07, 2017 11:01 am

Re: granix extreme bone pain

Postby Tdubz » Wed Nov 15, 2017 9:00 am

Awesome news benben! Welcome to nedville!


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