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Update on Steve - Update. Have some questions

Chelsea71
Posts: 1167
Joined: Sep 2012

Thank you everyone for all the thoughts and prayers for Steve and I over these past couple weeks. He was discharged from the hospital last night. 16 days in the hospital. Longer hospital stay and more of an ordeal than HIPEC, just to put it into perspective. For those who aren't aware, he developed a spontaneous hematoma on his right leg. They attribute it to a combination of high dose blood thinners and the weaning off decadron. They called it a really bizarre complication. I call it the worse hell we've ever been through. He is on a preventative dose of Fragmin but he needs to eventually increase to the treatment dose. He has numerous clots in his lung and some near his heart. He is walking with a cane. Does not get along quickly. The leg is still very painful. The pain will subside and the walking will improve once the swelling goes down. The body had to absorb all the fluid that's collected in the leg. He's happy to be home. He needs a lot of support though. Simply moving throughout the house and performing routine tasks, such as showering, are very difficult. I'm nervous about returning to work on Thursday. Hopefully he will continue to improve and we can close this unpleasant chapter. It has been a big setback for him.

Thanks for all the support. We really appreciated that thread that Wolfen started as well as all the P M's

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

Glad he is home!! Now you both can get some rest and heal!

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

ditto - hope he gets well soon!

 

Karin

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

Glad you are home and docs figured out the complication and were able to get it straightened out.

Our lives and physical selves change so much. Just last night, hubby was sitting in the recliner and said "I never dreamed that one day I'd be sitting here like this, with a feeding tube", unable to stand up by myself".  I don't suppose any of us ever thought we'd be traveling down a road like this, especially you younger folks. I think it's especially hard for him as he held his dad's hand as he died with cancer.

Not looking to forward to rads as I've heard that speedy bathroom visits are common.  Right now speed is not in our vocabulary either.

Hope Steve's road to recovery is swift with no more complications as he regains his strength.

Luv,

Wolfen

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

It's impossible to get better in the hospital.  Hugs to you both~AA

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

yayyyy Chels .....good news for Steve.....those first halting painful fragile moments at HOME are so wonderful.....it is so good to be out of hospital....

macaroni and cheese and glass of white wine......dat's what I had......pure comfort......and a sleep on the couch

take best care you two.....love mags

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I'm very glad he is home. Make sure you get some rest!

Judy

jen2012
Posts: 1186
Joined: Aug 2012

Been thinking of you guys...hope all is going well.

Annabelle41415's picture
Annabelle41415
Posts: 4200
Joined: Feb 2009

I'm so sorry.  He has been dealing with this for so long and I'm just glad that things are starting to go in the right direction, but sorry he is still in so much pain.  You are a wonderful caregiver and thank you for that as it's a hard position to take.  You are right there in the thick and thin of it all and no glory is given to you.  Thank you for the continued updates.  I'm checking periodically so I'm glad he's home.  Sure he will have much better care with you under his wings than any hospital around.

Kim

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

What an ordeal he has had!

 

*hugs*

Gail

Chelsea71
Posts: 1167
Joined: Sep 2012

Thanks everybody. Met with the liver surgeon yesterday. He wants to do 4 more chemos. That will make it 14. Rescan. If cancer has shrunk or is stable will do a two stage resection. He says the biggest risk will be going off chemo for 4 weeks before surgery. I forgot to ask how much time typically passes between the two resections. He did mention that they would do the left side first. Anybody know how long between surgeries in a two stage resection?

20 minutes after this app my cell rings and it's Shirley from the assisting devices program at the Ottawa Hospital ???? she went into a lengthy and complicated explanation about the big blood clot by Steves port. The superior vena cava is completely obstructed. (Had a program one month ago. Not sure what prompted her to all of a sudden look at it). The bottom line is that she and Steve's onc are worried about the 48 hr 5FU infusion. The concern is that the clot is absorbing the chemo and also that it is taking too long for the pump to empty. He is to go for chemo tomorrow as usual. Onc wants to talk to us on the 20 th in regards to making some changes. I said, "Like what. Getting chemo through the arm while staying in the hospital for 48 hrs?". She said no. There are other ways of doing the infusion. Said it can be done peripherally. Didn't seem to want to give out too many details. Does anyone know of other ways to get the 5th infusion? The conversation was quite unsettling.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hey Chels:)

New way to infuse?

I'm sure you are waiting anxiously for her to thrill you with her acumen.

I have no clue as to what she is referring to...I'm wondering why she did not want to explain the procedure? Too short of time?  Lack of patience?  Probably figured it would be too drawn out to explain it, so she probably tabled it until she meets with  you.

But, we're grown adults...I've always dealt with things - by dealing with them.  Everything is much scarier and apprehensiveness runs at a very high level, until we at least get the high level explanation, so we can build an image of sort of what to expect.

She left you with more questions than answers...

I'm so sorry for what your Steve has had to go through...and for all that you've had to go through with him. 

Wishing you were close so I could wrap you up in a big ol' Texas bear hug...if I can lose some more weight, you just might be able to wrap both arms around me, LOL!

Ok, that was my opportunity to break the tension for you...you have to admit though...it's dam funny when you think about it.

Thinking of you both...

-Craig  

Chelsea71
Posts: 1167
Joined: Sep 2012

The woman who called was a complete stranger to us. Have never even heard of her. It was almost like she just stumbled across the portogram results. She spoke to Steves onc and then called us. I wonder why the onc didn't call us instead of this port/picc nurse. I also wonder why she didn't move our app ahead. Oh yeah, now I remember, she is going to the Bahamas. She is quite geared up for holidays and is shuffling things around. This sounds like quite a problem. What they are concerned about is that the chemo is not being effective. You would think she would make this a priority and work us in somewhere. Instead he is going to chemo, as usual, without any of us really knowing if the chemo is working. It's all a waste of time and effort if the chemo is all being absorbed by that clot. I must admit, I am curious as to what options they have to offer. A peripheral infusion? That paints all sort of interesting images in my mind. It was so much simpler last time around.

Thanks for your response. Your always very good at breaking the tension!

Chels

sdp's picture
sdp
Posts: 138
Joined: Jan 2012

From my research prior to my resection I learnt that the time between the first and second resection to the liver Is anywhere between 45 days to 90 days with 60days being the optimal or average time . However, it all depends on the patient and the recovery after the first resection.

Pl research ALPPS procedure . It cuts the time between the two stages to as short as 15 days. It is offered by Dr Eduardo Santibanes in Argentina and the pioneer is Dr Hans Schlitt from Germany. In fact, I had my resection done by Dr Schlitt in Germany. Previously , all opinions which said they could do a resection on my liver mets , was for a two stage resection. The time between the resections being a bit more for my comfort.

So, my research And advise of Dr Geller of UPMC liver centre took me to Dr santibanes in Argentina And eventually to Dr Schlitt in Germany.

Dr Schlitt did my resection in a single stage.Though I had several mets in all segments and both lobes of the liver. However, Due to liver toxicity and handling issues he actually did it in two parts with two days in between. it all worked out so far. I had to do an RFA after a month to two liver mets as he didn't do the RFA at the time of the resection. I was told that he was worried about handling the liver. though the liver enzymes etc were normal the liver looked toxic from the chemo so he thought he would rather not do more handling while resecting. So I had to do a percutaneous RFA later on.

The ALPPS procedure is not offered in uSA at present but you can approach Dr Eduardo Santibanes in Argentina. Pl google him and the ALPPS procedure for further info in case you are worried about the time between the resections.

Chelsea71
Posts: 1167
Joined: Sep 2012

Thanks for this info. I am worried him stopping chemo prior to surgery and also worried about no chemo in between surgeries. (This is all a big "if". The way things have been going lately, I'd be surprised if this this surgery actually happens). When he was diagnosed with the liver recurrence, a few weeks passed before he started chemo. The tumors progressed significantly during this delay.

Worried about handling the liver due to toxicity. Never heard of that one. Interesting. Seems like you put a lot of time and effort into finding the best surgeon available. Glad it worked out for you.

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Why not a new port in the other side???

Chelsea71
Posts: 1167
Joined: Sep 2012

She said no new port and no picc line. Said it wouldn't work out due to the loction of the clot. I didn't specifically ask about placement on the other side. But I will. She said that should we remove the central line, we wouldn't be able to get another in.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I've seen ports on both sides, so I know it's possible to do either side.  What I don't know is if they might go into the same vein, and maybe that is where the clot is....  So sorry for all the complications your husband is having.  Many times, the complications are worse than the disease...

Tedd

Chelsea71
Posts: 1167
Joined: Sep 2012

You're right, Ted. The actual cancer has been the least of his problems. It's all these other strange complications. It's all really starting to affect his quality of life. The good news is that his walking is getting better and better with every day. I think he will be back to normal in a couple weeks.

Chelsea

geotina's picture
geotina
Posts: 2044
Joined: Oct 2009

They can put a port in on the other side.  If they say no, ask  why?  Maybe there is a reason why they can't put another port in.   In 3 1/2 years, George had 3 ports.  When his first port stopped working after the 2nd treatment, the surgeon took it out and put a new one in on the other side and it was used the very next day.  Fast forward a year or so  and yep, had trouble again, and the surgeon then took that one out and put in a 3rd port on the other side where the first one was.  My timeline may be off a little.  Anyway, there are others on the board who had a second port put in when the first stopped working.   Don't feel bad about asking why not if they say no.  They should explain it to you so you understand completely.  If they use terms you don't understand just look them in the eye and say "give that to me in English".

Best wishes for a successful outcome - Tina

 

 

Chelsea71
Posts: 1167
Joined: Sep 2012

Hi Tina,

Thanks for the response. Sorry to learn that George had port issues too. The conversation with the nurse was very awkward. We had just left an important appointment in Montreal and I was trying to figure out how to get to the highway etc. I later thought of a hundred questions I had wished I'd asked. I plan to find out if a new port on the other side is possible. I suspect, like Tedd suggested that it hooks into the same vein that has the clot. Too bad we couldn't just eliminate the damn clot. She did say that could not be done as it would be too dangerous. Were looking forward to getting some answers from Steves onc in two weeks.

Chelsea

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