Sort of O/T My Pity Party- RSVP

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Bev G
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Location: Quechee, VT

Sort of O/T My Pity Party- RSVP

Postby Bev G » Mon Mar 03, 2014 10:39 pm

Hi Kids,

I haven't been around much lately because so much has been going on and I am fairly depressed because of it I guess. Just so worn out in general.

My cancer update: CEA went up quite a lot last month and scared me a bit...6.9 up from around 5 in September. For the first time ever I had just a CAT without PET, according to the wishes of my new onc at Dartmouth. The CT was clear so I've tried to put the CEA out of my mind. He doesn't even want to repeat it for 6 months. Perhaps I've already posted this; sorry if I have.

I've been having really terrible trouble with neuropathy in both my hands and feet. Really, really bad and getting progressively worse. My endocrinologist is certain my feet neuropathy is 5FU induced, and hands are 5FU, carpal tunnel bilaterally, he thinks, and "something else". He's referred me to a neurologist who will also evaluate my brain function as chemo-brain (or whatever???) seems fairly substantial. So...I don't know if I'm going to have a weird new diagnosis coming up. They are insisting on doing an EMG before I even see the neurologist and I've read all about it on Dr Google and it scares the crap out of me. Anyone had one? I want the neurologist to tell me what, if any, help it will provide in treating the problem. Identification without treatment is utterly useless to me. My doc just added Cymbalta to my Lexapro to try to help---haven't started it yet but am praying it will help the pain, which is becoming a real big problem for me.

Also, my balance is so screwed up. I had a bad fall a couple of weeks ago and had to go to the ER. Thought I cracked my knee/hip up. No breaks, just a lot of soft tissue damage, and an effusion in my knee, but all is fine with that now. Thank God it was my left side because I am like a taxi driver around here, bringing me to my next whining.

Many of you know that my husband Steve has stage IV lymphoma which had gone wild in September, and had spread everywhere. So, we decided to move to Vermont, where my family is, and where he could perhaps get a bone marrow transplant at Dartmouth, the only thing which will save him. I'm so glad we came but it has sort of been an ongoing nightmare. he has had a couple of rounds of killer chemo up here, where he gets hospitalized for about 5 days and gets round the clock chemo. He's doe well with that... the effects seem not to be as bad as our CRC chemo at all, it just trashes his bone marrow (as it's intended to, since he has a "liquid" cancer) During this time he's had home nursing coming out every couple of days, but he won't let his home nurse draw his blood, insisting I do it. I have to take him to the hospital several times a week. About 11 days ago they started the process for the transplant. It's an unmitigated nightmare. He had one day of really killer chemo, Cytoxin, at 3x the normal dose, in order to fully destroy his bone marrow and presumably any cancer cells there, although they had done a bone marrow biopsy the week before which was negative for cancer cells. Since the Cytoxin, I've driven him to the hospital each day for 2 shots of neupogen (which they won't allow me to give him at home without paying directly for it---$2800) So, we trek out of the house in the ice and snow and ~0-10 degree temps and drive 1/2 hour each way for 5 seconds of shots. Today they were supposed to retrieve his stem cells by hooking him up to a sort of dialysis machine for 8 hours, but he had to have his blood count checked first...his white count was TWO!! Should be 7-8 THOUSAND, and his was 2, NOT 2,000...just 2. 2 white cells in his body. Holy crap! And, his platelet count was 14K. So, he had his 3rd platelet transfusion today (they can't transfuse white cells without a serious risk of fatal reaction, so he's stuck with that level and just praying they'll come up. There was no point in trying to retrieve any stem cells as they are a part of the white cell count, and he has essentially no white cells. So, we're sitting around with him having essentially no functioning bone marrow, and will go back tomorrow morning and see if things are improved. If his marrow hasn't turned back on by Friday, we're in very deep kimchi.

I feel very sympathetic for what he is going through, but I will be very frank. He has been a quite difficult person for the almost 35 years I've known him, and this situation has not improved anything. I'm in a rough place, nothing I do is right, and I get screamed at continuously. It's an amazing opportunity to try to hone my patience skills and ramp up my compassion. Some days are better than others. Someone here once said to me something like "if God gives us challenges according to our capacity, he must really think you're a badass"...or something like that. I loved that compliment and I think of it daily, as I imagine myself getting weaker and weaker, not just emotionally, but physically, too.

It's so hard keeping up with my friends, which is awful because I really miss them, and really need them. My "best" friend on this board (and she knows who she is, of course) is going through a lot right now, and I'm not able to be fully there for her, which sickens me. I read the posts here first thing every morning, but I so feel that I'm running on empty it is hard to respond to so many posts that I would like to. I keep all of my friends here in my thoughts and prayers, and am physically ill when I read about those really struggling.

We've had so many heartbreaking losses lately, and so many new folks who have joined us. I think it's been a pretty hard time all around, BUTT, I remain so grateful for all of my pals here, and think think of you unfailingly. If you read this far, you're amazing.

Love,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Sharona
Posts: 187
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Facebook Username: Sharon Rauch

Re: Sort of O/T My Pity Party- RSVP

Postby Sharona » Mon Mar 03, 2014 10:49 pm

Bev,
Wish I could do something to ease your plight and to boost your spirits. You are so strong and a huge source of information and support for so many. Know that you are in my prayers.
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch

gep
Posts: 418
Joined: Wed Aug 19, 2009 6:21 pm
Location: Chicago, IL

Re: Sort of O/T My Pity Party- RSVP

Postby gep » Mon Mar 03, 2014 11:24 pm

I look for your posts so just post when you can. All you can do is put one foot in front of the other and keep on going. Know that everyone here is rooting for you and Steve.
Also, there's another part to that swinging chicken thing that my father-in-law used to love to share. If the chicken while you're swinging it over/ around your head happens to poop on you (tried to find an appropriate word) or in your eyes, what you do is wipe it off and keep on going. That's all you can do. It sounds better in yiddish but hopefully I've gotten the point across.
All my best,
Gloria
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.

weisssoccermom
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Location: Pacific NW

Re: Sort of O/T My Pity Party- RSVP

Postby weisssoccermom » Mon Mar 03, 2014 11:41 pm

Bev,
I've had an EMG - in my leg muscles which was done at the same time as my nerve conduction study. To be honest, although neither is 'fun', I'd rather have an EMG any day over that nasty nerve conduction test. I also had another test done on my arm to see what was going on with the muscles there for a specific reason....again at the same time that I had a nerve conduction study on the same area and to verify the dx of carpal tunnel. As I recall, they didn't zap me or anything but made me contract my muscles for the EMG. The other study, geez, it was yucky. I've also had bilateral carpal tunnel - surgery on right hand was over 25 years ago, the left was done in 1988 - followed a few months later by a partial wrist replacement in that arm.
Good luck with all your tests. Hope they find some answers for you. I know how difficult it is to be dealing with something and going from doctor to doctor without any concrete answers....VERY FRUSTRATING!
Check back in when you get more info. and/or results.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Rob in PA
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Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Sort of O/T My Pity Party- RSVP

Postby Rob in PA » Mon Mar 03, 2014 11:46 pm

I had the emg..major sucknitude!
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Wendyz4
Posts: 50
Joined: Sat Nov 17, 2012 11:54 pm

Re: Sort of O/T My Pity Party- RSVP

Postby Wendyz4 » Mon Mar 03, 2014 11:57 pm

Party? That got my attention!!
I wish we could all gather around you ((hugs)).
Sorry you have down days/moments. Hoping you will have many smiles tomorrow.

Keep us posted when you are able, its always great to see your name :)
44 year old F
Dx 10/2012, T3aN2M0
Completed Xeloda/radiation 1/2013
Proctocolectomy with ileostomy 3/14/13
Future FOLFAX
Lynch positive-MSH2

ColOrPan
Posts: 378
Joined: Thu Aug 22, 2013 2:15 pm

Re: Sort of O/T My Pity Party- RSVP

Postby ColOrPan » Tue Mar 04, 2014 1:19 am

Hi Bev,
the cea could be from some bug or inflamation but I would not want to wait 6 months. Why don't you call your old onc, the one you had before you moved? See what she has to say about this. You should at least be offered to have your cea redone and if it comes back lower, you'll know it was a fluke and will have peace of mind.
06/2012 DH rare intestinal type Ampullary/duodenal cancer. They extrapolate from colon cancer. FOLFOX 6 been working since Aug 2013. Feb 2014 once a month folfox as maintenance.
May 2014 Folfiri - fail
Starting off-label JAKAFI 08/25/14

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Guinevere
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Location: NE TX

Re: Sort of O/T My Pity Party- RSVP

Postby Guinevere » Tue Mar 04, 2014 2:08 am

Bev,
Other than cyber hugs and telling you that you're in my prayers as is Steve, I don't have much advice or help in "Steve's Damned Cancer" department.

BUTT, as I was reading what you're going through with the neuropathy and chemo brain and balance problems, it reminds me of what my mom, who's also a long time diabetic (not nearly as long as you) has been going through. Hopefully, the Cymbalta will work on the neuropathy but, if it doesn't, can you try Lyrica? Mom's ENT has diagnosed some kind of inner ear problem where the tiny "rocks"have loosened from the little hairs in her inner ear. (I think I've correctly described it and, yeah, we kids have teased her about her having loose rocks in her head! :mrgreen: ) I'll be very interested to find out what they say about the chemo brain. Mom and I joke that I have chemo brain and she has diabetes brain. She's a business major and had to give the checkbook to my sister to take care of because her cognitive skills have gone to crap. She has a hard time putting her thoughts into words at times. I guess what I'm saying is that some of the crap you're going through might be compounded by the diabetes. I KNOW the Oxaliplatin has given me neuropathy. One of the reasons I refuse to go on it again. Period.

I hope this helps somewhat and maybe gives you another avenue to explore (like you're feeling like going down new avenues :roll:) I just pray you catch a break soon!

God bless ~
Gwen
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: Sort of O/T My Pity Party- RSVP

Postby stu » Tue Mar 04, 2014 5:13 am

Hi ,
For what it's worth I think you have been incredible given you hardly got time to draw breath from your own recovery before having to become a support to your husband. So just whenever you need support it's here for you. I do wish he could see a better way to communicate. But despite that please know your valued here. I do think natural resources get depleted and a weariness can descend . But keep focused on your value and I hope you get some relief from your symptoms.
Much love
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Sort of O/T My Pity Party- RSVP

Postby Bev G » Tue Mar 04, 2014 6:19 am

Guinevere wrote:Bev,
Other than cyber hugs and telling you that you're in my prayers as is Steve, I don't have much advice or help in "Steve's Damned Cancer" department.

BUTT, as I was reading what you're going through with the neuropathy and chemo brain and balance problems, it reminds me of what my mom, who's also a long time diabetic (not nearly as long as you) has been going through. Hopefully, the Cymbalta will work on the neuropathy but, if it doesn't, can you try Lyrica? Mom's ENT has diagnosed some kind of inner ear problem where the tiny "rocks"have loosened from the little hairs in her inner ear. (I think I've correctly described it and, yeah, we kids have teased her about her having loose rocks in her head! :mrgreen: ) I'll be very interested to find out what they say about the chemo brain. Mom and I joke that I have chemo brain and she has diabetes brain. She's a business major and had to give the checkbook to my sister to take care of because her cognitive skills have gone to crap. She has a hard time putting her thoughts into words at times. I guess what I'm saying is that some of the crap you're going through might be compounded by the diabetes. I KNOW the Oxaliplatin has given me neuropathy. One of the reasons I refuse to go on it again. Period.

I hope this helps somewhat and maybe gives you another avenue to explore (like you're feeling like going down new avenues :roll:) I just pray you catch a break soon!

God bless ~
Gwen


Hi, Mighty Queen!

Thank you for your thoughts on this. Interesting you mentioned the "rocks' in your mom's middle ear. Those things are called otoliths, and all of mine were detached too, as a result of repeated childhood head trauma (thanks a lot, mom). My mother found my head a convenient receptacle for whatever she happened to have in her hand, the heavier the better :roll: Anyhoo, I had repeated head MRIs (prior to cancer) to try to diagnose the crazy vertigo I was having and it ultimately became a no-brainer to figure out (pun intended) Wonder if all that childhood stuff is contributing to my brain stuff now? Hadn't thought of that. Have tried Lyrica, and I couldn't even stand up on it. My doc said I might be able to tolerate Neurontin (probably not), but he wants to try the Cymbalta first)

Love you, Gwen, Mighty Grandma!
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

Re: Sort of O/T My Pity Party- RSVP

Postby Ron50 » Tue Mar 04, 2014 7:11 am

Hi Bev,
I went to a neurologist. I told him I had severe neuropathy. I asked what had caused it and what I could do to treat it. He did nerve conductivity tests ,then with a straight face he told me he had no Idea what caused it and that he could not help me with it. That cost the best part of $500.00 . It helped tho I have now decided not to talk to stupid specialists. My GP has given me a script for Cymbalta. I did a lot or reading. I am not going to take it. He told me it was a painkiller for neuropathy pain. It is not it is an anti -depressant drug called duloxetine, a dual inhibitor ie Serotonin-Norepinephrine Reuptake Inhibitor. The article I read suggested that the US fda had problems in approving Cymbalta because it can cause liver damage. It is approved for major depressive dis orders and pain from diabetic neuropathy. Apparently it can raise fasting serum glucose. It is not approved for chronic pain. It has a lot of side effects including severe withdrawl symptoms. It is not addictive according to the maker but causes a severe "discontinuation syndrome"if you have been on it for some time and try to stop. Whether you take it or not is completely up to you but I really feel you need to investigate it fully before you start. You have more than enough issues to deal with already. Hugs Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

jean60
Posts: 427
Joined: Sun Sep 02, 2012 3:47 pm

Re: Sort of O/T My Pity Party- RSVP

Postby jean60 » Tue Mar 04, 2014 8:00 am

Dear Bev,

Glad to get an update, not glad to hear how it is. There are no words but know you are in my thoughts.

Jean
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

bldblu_2
Posts: 113
Joined: Mon Jul 01, 2013 12:19 pm

Re: Sort of O/T My Pity Party- RSVP

Postby bldblu_2 » Tue Mar 04, 2014 8:20 am

Praying things improve real soon for the both of you. There does seem to have been a lot of bad lately, things can only get better. Onward and upward.
My husband dx 12/2/2011 Colon
Folfox 2/2012-8/2012
March 2013 ~~ it's back
Mets to liver & peritoneum
Folfiri & avastin 4/2013
November 2013 stable scan
4/29/14 last Folfiri/Avastin
5/15/14 scan, new liver mets
6/4/14 Vectibix irenotecan

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cashmere
Posts: 305
Joined: Wed Jul 15, 2009 2:52 pm

Re: Sort of O/T My Pity Party- RSVP

Postby cashmere » Tue Mar 04, 2014 8:28 am

Hi Bev,

I am glad to hear from you, but saddened by what you are going through. Sounds like you have gotten a raw deal right from the get go.

Please know that I and I am sure all CC members think of you always.

I did take Cymbalta for a time, it helped with my joint pain, but did nothing for my neuropathy. The withdrawal is very difficult, I went through it for about 6 weeks. I do take Lyrica which helps me immensely but is not for everyone.

Sounds like you have a double whammy with the chemo and diabetes. I wish I could help in some way, it feels so inadequate these few words.

I will not go into my feelings about what Steve is going through, I just hope you realize that you are so important too and to take care of yourself. HUGS, Pearl
Stage III
Diagnosed 4/07 at 51
36 rad/24/7 chemo bag
surg 9/07
6 mon chemo w/48 hr bag
ileo reversal 5/08
NED since 9/07!!
Just resolved my 13th blockage
Been able to control blockage issues with fiber supplements!!

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Sort of O/T My Pity Party- RSVP

Postby lauragb » Tue Mar 04, 2014 9:40 am

Bev, I am so sorry to read the crap you are going through. Wish I could help, it really isn't fair........
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16


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