The Colon Club

My husband just started Lonsurf. Five days in and he has had nausea and most recently blisters on his hands and tightness in his chest (could be anxiety). There is not much out there on Lonsurf and we are the first patient of our oncologists to be treated with Lonsurf. Headed back to MD Anderson soon. Just curious if anyone else is further into Lonsurf treatment.

The fact that he has tightness in his chess, PLEASE put a call into his Onc or PCP NOW. IF this persist for a short period of time. Go to the ER ASAP! Could be nothing other than drug related. Could be something far more serious. If it get worse, ER ASAP.

I did not take Lonsurf, butt I believe many people on this board did. Please know, weekends people are busy and sometimes have a life. If you do not get a lot of response by Monday, bump it up. If you don't I will. Hope it get better for him.

I do HIGHLY recommend ginger for nausea. Ginger snap cookies, Ginger ale soda, ginger root, etc.

Please give us an update when you can. Again if tightness continue, ER ASAP!

Hope all works out well for your husband.

Lee

Hi ..Caretaker for my wife , she has been Stage 4 now for about 5 years now as you can see by her signature, She started Losurf Jan. of this year. Her CEA is a good marker for her it when down 2 points from 17.3 to 15.0 in March. No CT scan yet while on Lonsurf . She gets tried and not much of an appetite, low blood count, plus the diarrhea thing, some loss of hair too. otherwise side effects haven`t been terrible.
The next scan will tell if Lonsurf is helping ?????Should be coming up , her last scan was in late Dec.

My wife has been on lonsurf for four months. Initially she didn't have any side effects.

Right after she started the lonsurf, she also had DEBIRI TACE. First lobe went OK... second lobe was very painful and she's been weak with an intermittent low-grade fever (ibuprofen brings it down).

Side effects of lonsurf or the tace have been: nausea, fatigue, intermittent low-grade fever, white blood cell counts up and down, red blood cell counts low, liver panel mostly outside 'normal'. CEA going way way up (last was 690?).

Getting scanned next week so until then, who knows what's going on inside?

Previous to this doublet treatment, she's had very very minimal side effects (practically none with FOLFIRI+Avastin).

I would to add to my wife side effects , she does a lot of coughing now ...did have the coughing the first couple of cycles.. not sure what's up with the coughing ???
Has anyone else had the coughing too???

Jim ..If you could post on your wife`s scan ??? Hoping is a good report for her

Following.
I am interested to know if anyone has had a response to this.
Fingers crossed for all of you going this course.

Anyone taking Lonsurf, make sure they are checking your blood counts very regularly!

I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info

ebv60 wrote:Jim ..If you could post on your wife`s scan ??? Hoping is a good report for her

Scan came back... more involvement everywhere (lung, liver, lymph nodes) although the biggest tumors (liver/lung) are necrotic in the center. I guess that's indicative that the lonsurf is kind of working, and the debiri treatment might have been efficacious.

Got a call on Thursday from City of Hope for an invite to the enadenotucirev trial that DK37 missed... well her bilirubin was too high, so 'go fish'.

Red blood cell counts are a bit wacky and liver panel is 'close to normal' except for her bilirubin which is a tad high.

Hoping for miracles next week at the doc's office! Gotta get that liver stabilized so she can qualify for some interesting trials. The doc will no doubt let us know how he thinks the current regimen is performing.

ebv60 wrote:I would to add to my wife side effects , she does a lot of coughing now ...did have the coughing the first couple of cycles.. not sure what's up with the coughing ???
Has anyone else had the coughing too???

My wife has the coughing as well. Since her lonsurf treatment coincided with the allergy season, wasn't sure if it was allergies or not.

Everything's done blooming here but the intermittent cough remains.

Lonsurf.

QED

Hannah Faulkner wrote:I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info

If one reads the lonsurf 'drug facts' sheet, the manufacturer advises a blood test immediately after the second two-week 'on' cycle. (Day 15)

Not sure who reads those things, though.

.jim. wrote:

Hannah Faulkner wrote:I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info

If one reads the lonsurf 'drug facts' sheet, the manufacturer advises a blood test immediately after the second two-week 'on' cycle. (Day 15)

Not sure who reads those things, though.

Yes, but in some cases that is not frequent enough. It wasn't frequent enough for my husband, whose counts began to drop rapidly & testing only on day 15 could be too late.

Just a little update on my wife .. Lonsurf since Jan '17 ..getting a break for the Lonsurf for at least two weeks. She has lost a lot of weight, diarrhea thing, no appetite and really tired, Doctor order chest X-ray today a more blood test to check CEA..no scan yet, her last one was late Dec '16 .Was hope for a scan to see what the tumors are doing???

It will be 5 years tomorrow that the cancer was found ...she fought very hard . the cancer has taken a toll on her ..she has lost right at a 100 pounds over the 5 years

Original poster back. My husband has been on Lonsurf since 4/2017, almost a year now. Initially it knocked back the tumors ever so slightly. We just had a scan Tuesday and get the results in a few days. We are praying for good results however he feels like that won't be the case. It has worn on him, physically and mentally, diarrhea has been constant and lately he has been cramping (not just stomach). He used to regain strength and energy between rounds (5 days on, 2 days off, 5 days on, 2 weeks off), however, now, he remains tired and the diarrhea and cramping continues. He is a fighter and going on almost 7 years with only one 3 month period of "no disease evident". Curious if anyone else has been on Lonsurf for this long and you have done Lonsurf- what treatments did you try afterwards? Thanks!

Your DH has been through a lot, but I don't see Oxaliplatin on the list. Has he tried FOLFOX?