Stage 4 CC and no scans for first 5 months of treatment?

[tammyffb]

Hi all,

Hoping for some opinions/input regarding my sisters diagnosis. She was diagnosed as Stage 4 Colon Cancer with tumors in the liver, abdomen and peritoneum along with a few small nodules in both lungs back in January. She is 39 and this is beyond devastating. As of now she is not a candidate for surgery. She is about to undergo her 8th infusion of 5FU and Avastin, however she still has not received any scans since her initial diagnosis in January. At her last appointment her onco said he might be looking to schedule her 1st scans in late June or early July. Has anyone ever seen a case where scans had been held off for this long??? I understand her disease is very widespread, but not scanning to see if she is responding to treatment is beyond comprehension to me. Just wondering if anyone has experienced this? Thank you all, this board has been a savior for me!

Tammy

[jhocno197]

Are they keeping up with her CEA?

[stu]

Hi.
It is not easy for sure but that was how my mum was treated. They did keep an eye on her CEA's but they headed up. However the scan was worth the wait and she is here 7 years later.
I wish the same for your precious sister.
Kind regards
Stu

[michellecairn]

Hi,

I was dx in October of 2015, and had my first scan February 5, 2016. Chemo didn't work for me. I then went 6 weeks with no treatment and then got another round of chemo for my symptoms.

I started immunotherapy (keytruda) on March 24th, and was told I had to wait 12 weeks for a scan. So my next scan won't be until mid to late June.

Even though my scans are 4 months apart the waiting is hard. I just tell myself that the wait is so the drugs have time to work. The less I think about it the faster time seems to go.

[tammyffb]

Thank you all so much for the replies! Just hearing that others have had been in a similar situation with the scheduling of scans provided such a sense of relief. I was really worried the onco was just "throwing in the towel", so to speak, so am grateful to know this is not completely abnormal. My sister is the most beautiful, generous, kind-hearted person, and is remaining so positive with this horribly unfair hand she was dealt. They have been keeping up with her CEA counts, which were 2.2, 2.9, 2.3, and 2.5 most recently over the past 4 infusions. From everything I have read this is surprisingly low for the metastasis she was diagnosed with, however have read that CEA counts are not always an accurate predictor for some patients?

[tammyffb]

Also, michellecairn, I truly wish you the absolute best of success with the immunotherapy trial, please keep us posted on your progress!!!

[AppleTree]

I was diagnosed in early February and had colonoscopy, MRI and CT scan then. Had 5 weeks chemo/radiation starting mid-March. I am in Europe and they say it is standard for another scan 5 weeks after chemo/radiation for lower rectal cancer, which I will have in 2 more weeks. I sure hope my treatment worked! Yes, the waiting is hard. My DR told me that my blood tests were not a good indication of cancer at diagnosis - in other words, a blood test would have never caught it.

[tammyffb]

Well, again an odd update, my sister had her 8th chemo infusion yesterday and her oncologist told her he is going to stop running the CEA test because it is not a good indicator for her. He said her levels are very normal so it is just noise her blood results. He also stated this happens in about 10% of patients. So I am back to stressing about waiting until July for her first scans since her January diagnosis, and no CEA counts being run, but I guess given how widespread her metastasis is and how well she is tolerating the chemo he really wanted to throw as much as possible at the cancer prior to scheduling scans.

[TracieLynn]

Michelle,
I noticed before, you mention going to Northwestern in Chicago? Are you in the area? I am stage IV and trying to decide next steps after I can in next few weeks. Recovering from lung met surgery now, hoping no more buggers appear. Was wondering if your Onc at NW referred you for Keytruda? thx!

[chrissyrice]

Hi,
My cea is not a good indicator for me either. I think your doctor is wise to save money and not running this particular test if it means nothing.

Much better to keep track of your other counts ... white cells etc..

Also scanning every 3 months is pretty normal unless you are having some really bad symptoms. Remember these scans are loaded with radiation too.

I get scanned every 12 wks = 3 months too and blood work too. Right now I am in the watching and waiting for the for growth group.

No other treatments would be of benefit now, would just make me sick from chemo and speed up the end of life. Right now I am stable and will be scanning again on June 11th.

Hopefully when the growth is visible again I will have more options like Keytruda or something else.

Chrissy

[SuseB]

Michelle,
I noticed before, you mention going to Northwestern in Chicago? Are you in the area? I am stage IV and trying to decide next steps after I can in next few weeks. Recovering from lung met surgery now, hoping no more buggers appear. Was wondering if your Onc at NW referred you for Keytruda? thx!

Off topic but I am in Kenosha and treating at Froedert which I like, but am thin king of another opinion about the pelvic mets after my liver surgery. Where were you SE WI Chicago area folks treating before Northwestern, and why did you pick Northwestern, if I may ask?

[TracieLynn]

SuseB,

I was VERY unhappy with my treatment in the Chicago Suburbs (Dupage Medical Group). Oncologists with poor bedside manner and they refused to give me any Magnesium/Calcium with my FOLFOX treatments. I had one infusion with them and "walked" out like a stroke victim-hugging the wall, words slurring, tunnel vision, cramping hands and feet. AT Northwestern I feel like my doctors listen to me, and my subsequent infusions I tolerated much better. Side effects were significantly less! That said, it is a NCI so they are very busy but I usually don't wait too long for appointments, etc..

[Nik Colon]

I haven't read the replies, but if you want a scan PUSH for it! I was not supposed to have a another scan or surgery til after my 6th tx, but I kept bugging my onc to the point he finally said "fine" and got them after my 4th tx, and surgery was approved. May not be the same situation, but I would try. I would bring up the "wanting to know if tx is working" to push for it sooner, but that's me. I'm a PITA! (I don't trust CEA, mine was 4.9 at dx Stage 4, sooo)

[khadars]

Please push for a scan. If they don't approve it don't fret. Is it better to know than to not know? Yes, definitely. It is better to know if anything pops up.
Don't be afraid of a scan.

It makes a big difference to go to a cancer center that is on the NCI list. The higher ranked the better, IMHO. Though, I have heard from some of the colon talk people that some HMO infusion centers in their backyard have awesome compassionate nurses. Go figure!

[tammyffb]

Thank you for the replies. She had her first scans last Tuesday, and received the results yesterday. Apparently she just didn't want to tell anyone as she wanted to process the results on her own first, which I do understand. Thankfully there has been no spread, however the tumors unfortunately have all remained stable with only minimal shrinkage detected on some. She had received 8 infusions at the time scans were done. So she is still not a candidate for surgery at this time, and as of now her oncologist is recommending keeping her on the same chemo treatment in hopes that it will start to affect the tumors more as more time passes. I also plan on looking into any possible Immunotherapy Trials as soon as her genetic testing comes back in.