IV Hydration at home

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Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

IV Hydration at home

Postby Brikee » Mon Jan 09, 2017 12:54 pm

Hi all - I spoke with my husband's nurse this morning and since he has been having a hard time keep his calorie intake up (has gas/reflux pain when consuming food), they are planning to set up IV hydration at home. They hope this will help. The total nutrition IV will be another level. If there's anything else we should be aware of, please share. Hopefully it will be set up by tomorrow.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

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

Re: IV Hydration at home

Postby MissMolly » Mon Jan 09, 2017 4:38 pm

Birkee:
The addition of home IV hydration seems the compassionate choice for your husband.

My only suggestion would be to monitor with the visiting nurses or infusion staff that he is not overloaded with fluid volume. Signs of fluid overload would include: distal extremity swelling (hands/feet) with pitting edema; congested breathing; increased interstitial fluid with noticing of the opening of ulceration or weepy skin wounds.

That your husband has peritoneal involvement does pose a risk that his small intestine is being affected by overlying cancer cells. The risk is less a functional blockage (obstruction due to a mass) . . . but rather a risk of a physiological impairment of the small intestine in its metabolic and key absorption roles. There are hundreds of hormones that make their home in the GI track and there are hundreds of endocrine and opiate receptors along the GI track. Any number of processes can go into disarray and can make the intake of food and fluid problematic - both oral intake and IV administration.

I think you are smart to begin with IV hydration support before considering parental nutrition support.

I have been on parental nutrition for extensive periods of time. I can tell you that it is not cake walk. IV parental nutrition is taxing to the pancreas and liver owing to the intense glucose, electrolyte and lipid concentrations of the IV solution.

If you do opt to try IV parental nutrition, ask to talk with the formulating pharmacist yourself. Do not trust that your typical MD has the deeper knowledge base to write complex parental nutrition orders. Your formulating pharmacist is the true expert in parental nutrition and will be able to take into account your husband's health history and current health challenges in formulating an individualized parental nutrition "recipe" and rate of infusion over time that is appropriate for him.

I had parental nutrition at 65% of full parental nutrition strength. I think full-powered total parental nutrition (TPN) would have done me more adverse damage than benefit. Partial parental nutrition is always an option. Parental nutrition need not be all or none TPN.

Bottom Line: Be informed about the risks and benefits of parental nutrition. It is not a panacea. TPN can be very taxing on someone who is seriously medically compromised.

I hope the IV hydration gives your husband the "lift" in affect and well being that he so genuinely wants to find. I hope that things get easier for the both of you.
- 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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Maia
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Re: IV Hydration at home

Postby Maia » Mon Jan 09, 2017 4:46 pm

I have not an advice, but want to wish your husband the best. I.V. hydratation is something so helpful, immediately helpful! It's a bout of fresh energy.
I.V nutrition is other level, indeed, but even that can be reversible if a treatment starts to work --I have a friend with peri mets from other cancer; he was almost 3 months on parenteral nutrition (because tumour obstructing the small bowel; not even colostomy was possible) and now he's responding to treatment and back to eating per mouth --and gaining some weight back. : )

(BTW, I saw in other post that you said to DK37 you were looking forward to see his curated list of trials --he posted it and also you can access on my signature line)

Sending my best to your husband and you.

Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

Re: IV Hydration at home

Postby Brikee » Mon Jan 09, 2017 5:32 pm

Thank Karen, Maia for the notes!

Karen - I will keep an eye out on the swelling. I hope they might also train us on any side effects to look out for too. I'm wondering if they might have us keep track of how much fluid he might release when going to the bathroom. Question, what is pitting edema? I didn't realize how taxing it might be on the body but it's good to know. Also do you know if they might do it through the port or through a new IV line?

Maia - Thank you so much for sharing. It's so good to hear someone else's testimony that they made it through. This is going to be a whole new world for us.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

Re: IV Hydration at home

Postby Brikee » Mon Jan 09, 2017 5:36 pm

Maia wrote:I have not an advice, but want to wish your husband the best. I.V. hydratation is something so helpful, immediately helpful! It's a bout of fresh energy.
I.V nutrition is other level, indeed, but even that can be reversible if a treatment starts to work --I have a friend with peri mets from other cancer; he was almost 3 months on parenteral nutrition (because tumour obstructing the small bowel; not even colostomy was possible) and now he's responding to treatment and back to eating per mouth --and gaining some weight back. : )

(BTW, I saw in other post that you said to DK37 you were looking forward to see his curated list of trials --he posted it and also you can access on my signature line)

Sending my best to your husband and you.


Maia - THanks for sharing the link to the trials. It looks pretty awesome. I will share with the rest of our family too.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: IV Hydration at home

Postby CRguy » Mon Jan 09, 2017 7:23 pm

Brikee wrote: I'm wondering if they might have us keep track of how much fluid he might release when going to the bathroom. Question, what is pitting edema?

push a finger into a fatty or muscular part of your body and the depression will quickly fill in again = normal
pitting edema = push a finger in and the depression will stay like a "memory foam mattress" response and can often blanch out or appear whiter/paler than the surrounding tissue.
here is a great Wiki picture to illustrate https://en.wikipedia.org/wiki/Edema

fluid In/Outs are the mainstay of IV therapy in hospitals, letting us know how much the patient retains, takes in and puts out.
it would be a very good idea if they give you some guidelines about measuring urine output ( e.g. 24 hour collection logs )
they can also show you how to read the volume markings on the IV bags so you get some notion of "how many milliliters over this many hours" which will be based on the infusion flow rate ( so many milliliters per hour based on losses/deficits and ongoing requirements )

lots of things to be attended to but they are manageable.
Maia and MM have given you some great feedback

Best wishes to your and hubby
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

ronnieciao
Posts: 95
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: IV Hydration at home

Postby ronnieciao » Tue Jan 10, 2017 2:48 pm

Maia wrote:I have not an advice, but want to wish your husband the best. I.V. hydratation is something so helpful, immediately helpful! It's a bout of fresh energy.
I.V nutrition is other level, indeed, but even that can be reversible if a treatment starts to work --I have a friend with peri mets from other cancer; he was almost 3 months on parenteral nutrition (because tumour obstructing the small bowel; not even colostomy was possible) and now he's responding to treatment and back to eating per mouth --and gaining some weight back. : )

(BTW, I saw in other post that you said to DK37 you were looking forward to see his curated list of trials --he posted it and also you can access on my signature line)

Sending my best to your husband and you.


maia- that's good news about your friend. my mother had a disastrous peritoneal situation at diagnosis, with copious ascites etc. chemo killed it completely off - they couldnt even see anything when they removed her primary via laparo, and they did look. while they were in there, they gave her an omentectomy, and the path came back negative. her abdomen has been back to " normal" for over 2 years now. she still has disease in many other places though of course. but her peritoneum remains clean ever since. we can only hope it stays that way.

just sharing this to show that overcoming peritoneal disease it sometime possible. even without hipec...or ar least control it.
Last edited by ronnieciao on Tue Jan 10, 2017 6:26 pm, edited 1 time in total.
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

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Maia
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Re: IV Hydration at home

Postby Maia » Tue Jan 10, 2017 3:33 pm

ronnieciao wrote:maia- that's good news about your friend. my mother had a disastrous peritoneal situation at diagnosis, with copious ascites etc. chemo killed it completely off - they couldnt even see anything when they removed her primary via laparo, and they did look. while they were in there, they gave her an omentectomy, and the path came back negative. her abdomen has been back to " normal" for over 2 years now. she still has disease in many other places though of course. but her peritoneum has remain clean since. we can only hope it stays that way.

just sharing this to show that overcoming peritoneal disease it sometime possible. even without hipec...or ar least control it.


That is so wonderful to know! And you're so, so kind to share that... thank you! :)

My friend has peritoneal carcinomatosis from an old bladder tumour --a big intraperitoneal tumour. Went for a trial with duravlumab (an immunotherapy, an anti PD-L1) but the tumour progressed too fast and he got an obstruction. However, he's responding to chemo. It was a tricky situation at the beginning --we was in very bad shape because of the obstruction itself, not from the trial. BUT now he's responding amazingly. I don't know if any of his doctors have seen before someone coming "back" from three months of total parenteral nutrition. My (absolutely personal) hypotesis is that the chemotherapy had some kind of synergy, for good, with the previous immuno. Now, new horizons open for him, like (maybe): PIPAC, before further, new immunotherapies.
Ronnie, I did read about your mom, and I did read you're in Italy, I think; I think I asked you that because I didn't know if the peri mets were still active. In any case, IF eventually they are a problem, know that you have in Europe something that only will be (hopefully) approved this year in USA: PIPAC (Pressurized Intraperitoneal Aerosol Chemotherapy).
Again, thank you so much for sharing your mom's amazing recovery from peri mets. Where is the disease now? Wishing her the best!!

Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

Re: IV Hydration at home

Postby Brikee » Tue Jan 10, 2017 6:22 pm

Thanks everyone for sharing! So good to hear people recover from peri mets.

Just a quick update, my husband's nurse case manager called today and said they are processing the order for the nurse to come over. I think everything should be in place around Thursday (materials and nurse). The order was 3x a week done via the port. My husband seemed very sad to hear it was being done via port because he said it is very painful. We requested through IV if possible but they said it isn't possible at home, it can only be done via port. That's where we are at so far.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

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

Re: IV Hydration at home

Postby jhocno197 » Tue Jan 10, 2017 7:03 pm

Brikee wrote:My husband seemed very sad to hear it was being done via port because he said it is very painful. We requested through IV if possible but they said it isn't possible at home, it can only be done via port. That's where we are at so far.



Has he tried the numbing cream on the skin over the port?
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

Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

Re: IV Hydration at home

Postby Brikee » Tue Jan 10, 2017 10:41 pm

jhocno197 wrote:
Brikee wrote:My husband seemed very sad to hear it was being done via port because he said it is very painful. We requested through IV if possible but they said it isn't possible at home, it can only be done via port. That's where we are at so far.



Has he tried the numbing cream on the skin over the port?


Haven't tried that. What's the numbing cream called? Is there a special way to do it? Thanks for sharing.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: IV Hydration at home

Postby CRguy » Tue Jan 10, 2017 11:17 pm

It's called EMLA cream
(Eutetic Mixture of Local Anesthetics ... as I recall ? )

( UPDATE : lidocaine and prilocaine are the actual local anesthetics )

ANY doc and nurse will know about it

Best wishes
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: IV Hydration at home

Postby jhocno197 » Wed Jan 11, 2017 9:36 am

Brikee wrote:
Haven't tried that. What's the numbing cream called? Is there a special way to do it? Thanks for sharing.



I think the ointment they prescribed for my husband was lidocaine.
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

Brikee
Posts: 21
Joined: Sat Oct 29, 2016 10:00 pm

Re: IV Hydration at home

Postby Brikee » Wed Jan 11, 2017 4:28 pm

Ok good to know. I'll mention the EMLA cream to them when they make preparations to come over.
Hubby DX CC IV 7/15/16 - primary 6cm (mets to peri, liver, lungs) 36yo. BRAF mutation.
Folfox. 9x (7/22 – 11/3)
Neulasta 7x (9/10- 12/29)
Folfox + Irinotecan (folirinox) 1x(11/17)
IVC Filter, Endo 1cm ulcer stomach (11/25)
Folfirinox 1x(12/1)
Tenkoff (12/9)
5FU + Panitumumab (Vectibix) (12/15)
CEA: 958 (7/21), 186 (11/17), 252 (12/1), 337 (12/29)
Last CT: 10/27, two sm nodes in lung decr in half. 2 nodes prev in liver, 1 decreased, 1 not vis.
Joined Lord @ 1/23

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: IV Hydration at home

Postby DarknessEmbraced » Wed Jan 11, 2017 4:58 pm

I hope that the IV hydration helps your husband!*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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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