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Sir Spheres problems?

Cindyz
Posts: 9
Joined: Jul 2009

Hi everyone,

I haven't been here for a while, as I normally visit another board when I have some spare time. I remember really learning a lot here when I first came, so I thought I'd revisit and see if anyone has had any experience with Sir Spheres here. I just searched the boards and saw that some people had actually had the treatment, but I didn't really find anything about "afterwards."

I'm not sure if this is on my signature or not, but my husband was dx May 2009 with Stage IV mets to the liver and lymph nodes, "too numerous to count" on the liver. Resection was not an option becaues of the two lymph nodes, so we were told to start chemotherapy, which he did. Folfox/Avastin and then Folfiri/Avastin failed him, as has Folfiri/Erbitux. We decided to get the Sir Spheres done while his liver still had acceptable enzyme levels, and he had the treatment this past Tuesday. His liver was a little compromised in levels, and the doctor had originally decided to give him a reduced dosage. When we met with the doctor the morning of the procedure, he explained that he changed his mind and wanted to give Stephen the full amount, since "he is otherwise young and healthy and his cancer is progressing so rapidly." His opinion was that a reduced dosage might do no good, and Stephen needed the maximum amount.

He was in a lot of pain right after the surgery (abdominal), but the severity of that diminished. Since Tuesday, however, he's been EXTREMELY fatigued...I mean very very tired. Going from the couch to the bedroom is a feat for him. He said that he's never experienced anything like this...he's just completely wiped out. His appetite is also not very good, and since he's already lost 60 pounds we'd like to keep as much weight on him as we can. Do any of you know if this level of being so tired is common? He has had a little bit of liver pain, but nothing really bad. I wonder...maybe they gave him too much since his liver was compromised already? His SGOT and other level (can't remember those initials!) were both 65 but his bilirubin was .8, so I think those are pretty elevated (except the bilirubin).

Any insight or help with this would be really really appreciated. His liver has been very swollen before the Sir Spheres and causing him a lot of pain. I was hoping that he'd get some relief from this after the spheres, but....?

Thanks so much!
Cindy

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I think I read your posts on the Colon Club. Anyway, there are 2 members here that have had this done very recently. One member, "ittapp" has had it done within the last 2 weeks. You can look through the posts for her name, she did come on the board after her treatment. If you send her a pm I'm sure she will respond to you and exchange information. The other member that had it done at the end of December was "iluvmms" Tina

Cindyz
Posts: 9
Joined: Jul 2009

Hi...and thank you! I'm going to have to re-remember how to PM, etc, and how to generally navigate around this board. I will find ittapp and see what she says.

I did talk to Stephen's doctor today, and if anyone is considering Sir Spheres, I wanted to tell you that you should prepare to be very very tired. We weren't told that, but today when I talked to his doctor and explained just how exhausted Stephen is, he said that this was entirely normal. So...there ya go! Wish they would have warned us before so that I wouldn't be so concerned, but whatever. At least I know this is okay.

He likened it to being at the beach all day long, getting a sunburn, then coming home and feeling really really tired. That about explains it for Stephen.

Thanks for you help!

Cindyz
Posts: 9
Joined: Jul 2009

Tina, I cannot for the life of me figure out how to PM someone! I clicked on ittapp's name but it just goes to hre profile. Can you help? Thanks again.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Go to CSN home. In the middle column you will see Connect and Communications, under that is the mail part. In new message, put in her name and then you can type a message and send it to her. When she logs in she will see she has a new message. Hope this helps. Tina

clier
Posts: 29
Joined: Feb 2009

Hi Cindy,

I'm Chris. If you'd like, we can figure out how to PM each other, but in the meanwhile, I was dx 2/09 with Stage IV Colon C, mets to liver, non-resectable & now facing poss mets to lungs. I did 6 months Foxfox/Avastin & have done Sir spheres twice w/ Dr Charlie Nutting: once 4/09 once 12/09. I plan to do another dose in a month or two, once we get the lung issue addressed.

I had a large amt of abdominal pain - mostly the liver sac swelling, I was told - and a lot of fatigue...going up our stairs meant I had to sit down for several minutes. It lasted several weeks. I am 46, 6' tall, 170 lbs, in good shape.

The best thing I've done overall is work w/ my family doc & oncologist on getting my pain under control - it helped my outlook and my appetite, which, in turn, helped my fatigue. The best thing I've found are Fentanyl patches. I change mine every 72 hrs, they are 50mcg, and I take a preventative Percocet around dinner time, since I know evenings are the worst for me, pain-wise. It's made a big difference...been doing it for about 10 days now.

How else can I help? My wife and I, like you two, are fighting this thing together...took us completely by surprise.

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hi Clier, did you have success with the Sir Spheres shrinking tumors? and if so what %? Thanks, Patti (Sir Spheres a week ago)

clier
Posts: 29
Joined: Feb 2009

Hi Patti, it's Chris. Hard to tell. I had 8 large tumors spread thru out liver dx 2/09 and between a spheres treatment 4/09, one 12/09 and 6 months of FolFox, many of them are less active, but they are still there, with a few new ones & now prob some in lungs. The onc & the interventional radiologist both think the spheres were a success, and I suppose I agree. I was just hoping for complete & total eradication of all tumors ;)

Cindyz
Posts: 9
Joined: Jul 2009

Hi Chris,

I asked about doing Sir Spheres more than once, and Stephen's doctor said that they really didn't do this procedure more than once, usually.... he said it all depended on outside liver involvement and the response to the first Sir Spheres, but that he had only treated two people twice. I didn't really understand why. Also, they did both lobes at the same time with Stephen, but I see with you and Patti they did separate lobes. I wonder why? Stephen has a lot of involvement in both lobes, a lot of big tumors and little tumors. His liver is almost completely lit up on the scans...pretty scary. When he was first dx in May 09, his CEA was 8. It then continued to rise up to over 100 - there has never been a decline in this number for him and the cancer has continued to progress even with the chemo.
They are now seeing some lung involvement also. Last scan showed a few nodules that are small but they think since this is all new, it's cancerous. They went ahead and did the Sir Spheres for him though.
I think his energy level is getting better, little by little. He did try those patches you have Chris, but couldn't handle them unfortunately. They made him throw up a lot. He started with 50 but then decreased his dosage to 25...still couldn't handle them. I have heard that they really do the job for those folks who can take the patches, so I'm glad you can Chris.
Patti, thank you for your PM. I am going to send you a separate email. You guys are so helpful, I really appreciate everything. I hope y'all are feeling well and are having a great weekend!

Cindyz
Posts: 9
Joined: Jul 2009

Hi Chris,

I asked about doing Sir Spheres more than once, and Stephen's doctor said that they really didn't do this procedure more than once, usually.... he said it all depended on outside liver involvement and the response to the first Sir Spheres, but that he had only treated two people twice. I didn't really understand why. Also, they did both lobes at the same time with Stephen, but I see with you and Patti they did separate lobes. I wonder why? Stephen has a lot of involvement in both lobes, a lot of big tumors and little tumors. His liver is almost completely lit up on the scans...pretty scary. When he was first dx in May 09, his CEA was 8. It then continued to rise up to over 100 - there has never been a decline in this number for him and the cancer has continued to progress even with the chemo.
They are now seeing some lung involvement also. Last scan showed a few nodules that are small but they think since this is all new, it's cancerous. They went ahead and did the Sir Spheres for him though.
I think his energy level is getting better, little by little. He did try those patches you have Chris, but couldn't handle them unfortunately. They made him throw up a lot. He started with 50 but then decreased his dosage to 25...still couldn't handle them. I have heard that they really do the job for those folks who can take the patches, so I'm glad you can Chris.
Patti, thank you for your PM. I am going to send you a separate email. You guys are so helpful, I really appreciate everything. I hope y'all are feeling well and are having a great weekend!

clier
Posts: 29
Joined: Feb 2009

Hi Cindy,

Hard to know why they treated your husband's liver different than mine. Seems like all of us fighting cancer want to take over & it's pretty hard to trust doctors, since you feel like you are literally trusting them with your life.

I do feel very fortunate to have had Dr Charlie Nutting (Radiology Imaging Associates, now in the Tech Ctr), who evidentially does more of these sphere treatments than any other doc in the country. Maybe a second opinion on the Sir-S is in order?

Sorry those patches didn't work, either. There are also Fentanyl 'pops' (look like lolipops), used for breakthru pain, which I haven't used, but have heard good things. I hope he can get his pain under control - that's so important.

Blessings,

c

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I saw this from 'Karin' on Colon Club and wanted to share here for Cindy and Stephen's friends.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Cindy wanted me to update the board: Stephen's been moved to CCU. His blood pressure is still high 140s/90s and his heart rate is too high: 130s.

They put in a PICC to give him multiple antibiotics, they are using his port for the TPN only. They found yeast growing in his peritoneal fluid, so they'll be treating for that. His bilirubin rose and was at 4, not sure why yet. They gave him Lasix and albumin today.

Stephen is still very confused and talking out of his head, but his ammonia level was normal so it's not that.

Cindy is very tired of course, and is just trying to get some rest. Bless their hearts. I gave her my phone # just in case I could help, and she said to thank jmarie for offering to help, it was very nice.

Pray for stephen and cindy, they need all of our prayers, positive thoughts, and just good luck, at this point.
Luv and hugs,
Karin

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I saw that also this morning. Poor Stephen, it is one thing after another. Thanks for posting.

Tina

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

My hopes and prayers go out to Cindy and Stephen.

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pluckey
Posts: 484
Joined: Jul 2009

Is this a complication because of the Sir Spheres treatment?

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I don't know if it is a complication of Sir Spheres but I have been wondering the same myself. Both he and Patti received them within a few weeks of each other. That being said, others on the board have had them without any major problems.

Take care and continued success in your recovery.

Tina

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Cindy has been updating almost daily on Colon Club. Stephen has been moved back to CCU today and needs our good thoughts or prayers.

Quote from Cindy:

Anyway, the reason the internist and infectious disease guy were concerned is that Stephen's blood pressure dropped alarmingly during the day. Last reading was about 89/50. He has no fever, and his other symptoms are the same. They immediately gave him fluids, even though he's swollen up like a whale. They said that this was really the only thing to do for low blood pressure in his case. The internist said that he's very afraid that Stephen's perforation never healed.

More update

Original update

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I have also been reading of Stephen's recent set back. Gosh, how is Cindy to make so many decisions. It seems the right hand doesn't know what the left hand is doing at that hospital. Doc 1 says one thing, doc 2 says another, doc 3 says surgery, doc 4 says no surgery. I feel so badly for them. I think Cindy's gut is telling her to bring Stephen home but with so many complications, don't know if that is resonable or possible right now. What they are doing at that hospital appears to just make things worse. If you see another update from Cindy would you post it on this board. Cindy did post here, not often, but did have lots of contact with Patti about the Sir Spheres thing and was very helpful to her.

Thanks Tina

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

been reading it as well, it's so sad. Did all this happen because of Sir Spheres?? If so, I may need to think twice about doing it then.

Hugsss!
~Donna

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

If I read correctly (post under Avastin Good or Bad on Colon Club) Stephen had a perforation after his Avastin infusion which led to a very bad infection. He was admitted that same night.

The doctor doesn't think the Ascites is caused by the infection or feels it cannot be helped by antibiotics. I've not seen any remark that led me to believe the Sir Spheres caused this but I think I'd ask, if I were you.

New updates say Stephan's perforation has not healed.

Diane

Trapbear's picture
Trapbear
Posts: 109
Joined: Sep 2009

GI perforations are a very rare, but very serious side effect of Avastin.

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