Medical Forum / Diseases and Disorders / Cancer / January 2004
Need advice for my friend
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JDWAT@webtv.net - 05 Jan 2004 19:03 GMT Hi. My name is Maggie & I'm seeking helpful advice to pass along to my friend.
Her husband was dx'd with stage 4 colon cancer (which has spread to the liver) the week before Christmas. They have since then gotten all the bloodwork, CT scans & mediport inserted. The tumor is at the junction of the sigmoid colon and rectum. They will not do surgery yet as they're trying to shrink it with aggressive chemo. They will use Cisplatin the first day-all day & "the vp 16 day 2 and 3" (quote-not sure what this means?). "then off two weeks and then round 2 with the same thing." It is a very aggressive type of crc called small cell carcinoma usually found in the lung. It is not adenocarcinoma.
What can they expect as far as treatment concerns? These chemo's are beyond my vocabulary. Is this an extremely aggressive chemo? Will she need to get help for him 24/7? She's not well either, so should she look into assistance with this type of chemo/cancer? Any help/advice on the treatment, or dx itself is very much appreciated.
I am hoping she will come here & start posting as my knowledge only goes so far. I am willing to learn with her, however. I am not able to help her personally as I am many miles from her.
Thank you for your thoughts, Maggie
J - 05 Jan 2004 22:31 GMT > Hi. My name is Maggie & I'm seeking helpful advice to pass along to my > friend. [quoted text clipped - 20 lines] > so far. I am willing to learn with her, however. I am not able to help > her personally as I am many miles from her. Hello Maggie, thank you for posting for your friend. I do hope she contacts either the ACOR group list or posts here herself. It's very difficult relaying information through a third party and sometimes I only give out bits of information, to ease a person through difficult subjects (once I've gotten a better sense of how they'll handle such information, of course and/or what their doctor has told them ).
Everyone reacts differently to chemos, and it's complicated by combinations of chemos (and their other health issues if applicable or their general health before the diagnosis and sometimes age) but here's the two that you've mentioned. So if you are able to obtain any of the above info, it would be helpful.
http://www.cancerhelp.org.uk/help/default.asp?page=4102 VP16 Etoposide http://www.cancerhelp.org.uk/help/default.asp?page=4002 cisplatin (platinum based)
It's my understanding that platinum based chemos have a potential for more side effects (as compared to say a Gemzar) and it's the only way to have a chance to shrink the tumour. Given the above, all I can say is contact his doctor if anything not listed in the above (or unexpected) starts to occur. Another option (which might not be a bad idea) is to contact hospice who can help monitor the situation on an as needed basis and if at some point, it's decided that the chemo isn't working and they stop it and want "palliative care" they've already been in contact with one of their choice who knows the situation and is at the ready to help at home or help them decide if palliative care in hospital would be the better choice. And/or with complications if the surgery occurs. If she's pretty well alone (with few family/friends) resources, she'll really need someone nearby she can call at a moment's notice and have some reassurance that someone will drop by at planned intervals. There's three such organizations mentioned in our FAQ http://www.cancersupporters.com/asc/links.html (probably all have offices or satellite sites operating near her).
As to the scheduling of the chemos, I would be guessing, perhaps Steph (when he comes by) would recognize what that means, so watch for other replies.
There's perhaps some coping tips here, but for instance, if he has trouble with nausea or seems dehydrated, if she's not someone who is medically inclined, she may not recognize signs of or know which to try first, the tips or call the doctor, I would say the latter. http://www.cancer.gov/cancerinfo/coping/ but it's handy to look through to get a general idea of what some of the issues might be.
I'll have more for you in a bit. J PS We usually recommend that posters "munge" their e-mail address before posting so she won't be privately contact by scammers. I'll have to leave that with you/her.
gloreeah - 08 Jan 2004 16:28 GMT How does one "munge" an address?
I've been contacted by scammers because of posting here.
Thanks.
G
> > J > PS We usually recommend that posters "munge" their e-mail address before > posting so she won't be privately contact by scammers. I'll have to leave > that with you/her. J - 08 Jan 2004 19:38 GMT > How does one "munge" an address? > > I've been contacted by scammers because of posting here. Hi Glo, Munging instructions varies per newsreader and sometimes version of newsreader.
As far as I know (and have experienced), when posting through Google (as you are), you can't munge your address. Some people use a throwaway e-mail account for newsgroups and keep one e-mail account for their personal stuff. Meaning opening a different e-mail account at excite.com or yahoo.com or any of the free e-mail accounts that also have instructions how to post to newsgroups. (because I don't know how to). So that's one option.
Another, is to just delete e-mails from scammers who are contacting you by e-mail.
If it's real "spam" (repeat subjects or e-mailers), you could see if you have a filtering system or a place in your excite.com settings where you can set up the person or subject to send it to trash automatically. Yahoo has a spam folder and picks up quite a few for me. So all I have to do is go in and check off the ones that I know for sure are spam, then click delete without even having to bother reading them. Whatever you do, DO NOT reply to them by e-mail, even to tell them to quit e-mailing you, because if it's spam, you are confirming to them that your e-mail address is valid and you are just wasting your time.
Some posters (on various newsgroups) have their "news" settings to "reply to both the group and the person's e-mail" so it might be purely accidental that some e-mails are ending up in your inbox. They are not supposed to do that on this newsgroup without posting and asking your permission first. But we have no control over them doing that. I doubt that's what was happening though, because if I recall, I was the only one replying to your posts and I don't e-mail off of a newsgroup post.
J
J - 06 Jan 2004 02:29 GMT > They will > use Cisplatin the first day-all day & "the vp 16 day 2 and 3" (quote-not > sure what this means?). "then off two weeks and then round 2 with > the same thing." Was thinking that the best person to ask about the above is the oncologist. She has the right to contact the cancer centre (hospital) unless her husband has specified that she can't, but they will usually speak to the closest relative. She may not be able to talk directly to the oncologist but most places have a team. Well here a "primary nurse" is assigned to each patient and can be called. The info about the chemo schedule (I would hope) would be listed in the file or (s)he would know what the treatment plan is.
> It is a very aggressive type of crc called small cell carcinoma > usually found in the lung. It is not adenocarcinoma. I have 2 websites http://www.radinfonet.com/cme/krinsky2/krinsky2_04.htm Yet this is a variant of prostatic carcinoma known as small-cell or anaplastic carcinoma of the prostate. Figure 47 presents another example of small-cell carcinoma of the prostate. Although this disease has been in oncology literature for some time, it was only introduced to radiology literature in 1998, when Larry Schwartz published a paper on small-cell carcinoma of the prostate in Radiology.
Unfortunately, small-cell carcinoma of the prostate has a very poor prognosis. Patients with this disease may have carcinomatosis and visceral metastasis. And, as the tumor does not secrete PSA, 60% of these patients will have normal PSA and will therefore not respond to the typical antiandrogen therapy or orchiectomy. They will, however, respond to platinum-based chemotherapy. In a way, small-cell carcinoma can be considered oat cell carcinoma of the prostate.
In other parts of the body, such as the pancreas, small-cell or neuroendocrine features portend a better prognosis. In small-cell carcinoma of the prostate and of the colon however, these features mean a much worse prognosis.
and http://www.sma.org/smj/96sept16.htm (I'm not posting the whole article) Primary small cell undifferentiated carcinoma of the colon and rectum, either pure or combined with another histologic type (or types), is an unusual malignancy, accounting for less than 1% of all colorectal cancers; only 94 cases have been reported in the English-language literature.1-5 The histologic type of malignancy complicating long-standing ulcerative colitis is usually adenocarcinoma arising on a dysplastic large intestinal mucosa.6 Few cases of other types of cancers in the colon and rectum have been reported in association with ulcerative colitis.7-15 We describe a case of primary small cell undifferentiated carcinoma (SCUC) of the rectum in a patient with a history of ulcerative colitis and present a review of the literature.
Based on the diagnosis of small cell neuroendocrine carcinoma and metastatic liver disease, the patient had eight courses of palliative radiotherapy. No invasive procedure was done until 3 months later, when the patient was readmitted for a pathologic fracture of the left femur. A biopsy specimen of the femur was positive for metastatic SCUC, with immunopositivity for cytokeratin (AE1/3), synaptophysin, chromogranin, and NSE. During the same hospital admission, a subcutaneous nodule was found in the left breast, but no biopsy material was obtained. The patient died during the same hospital admission; autopsy was declined by the family.
DISCUSSION
Ninety-four cases of primary SCUC of the colon and rectum have been reported in the English-language literature; the majority of these cases have been reported or reviewed in a few review articles.1-5 We analyzed the clinical data in all cases. The patient's age was recorded in 75 cases, with a peak incidence in the sixth and seventh decades (Fig 4). Despite these late occurrences of the disease, it was also reported in patients in their third decade. Tumor location was recorded in 77 cases. The most common location of the tumor is the rectum, followed by the cecum and the sigmoid colon. It has never been reported in the descending colon.
Gaffey et al2 described at least three degrees of histologic differentiation of these tumors. The least differentiated subtype is the small cell neuroendocrine-oat cell variant characterized by small tumor cells (2 to 3 times the size of the mature lymphocytes) and scanty cytoplasm. The most mature cell type is the moderately differentiated neuroendocrine carcinoma manifested by large tumor cells with vesicular nuclei, prominent nucleoli, and relatively abundant cytoplasm. These neoplasms are histologically intermediate between typical carcinoids and small cell undifferentiated carcinoma. The third tumor type is the small cell neuroendocrine-intermediate variant, which is a transitional histologic type between the other two types. Even though the mitotic activity of these tumors decreases with the more differentiated types, no differences in clinical appearance have been reported. Ultrastructurally, membrane-bound, electron-dense, neurosecretory cytoplasmic granules have been observed. The number of these organelles correlates with the degree of differentiation. Immunohistochemical data are available in 32 reports (including our case). All tumors were positive for cytokeratin, with decreased positivity for NSE and chromogranin (Fig 5). It seems that the chance of immunopositivity for the neuroendocrine markers (eg, NSE, synaptophysin, chromogranin) is higher with the more differentiated tumors. This may be attributed to the increased number of neurosecretory granules in the tumor cells. However, the validity of this statement is lacking because of the insufficient number of cases.
Regardless of the histologic subtype, these tumors are highly aggressive compared with their adenocarcinoma counterparts of the same stage, and they are associated with a mean survival of 11 months.2 Therefore, histologic distinction plays an important role in management of the patient's disease and in predicting the prognosis. Based on the light microscopic appearance of these tumors, it may be difficult at times to distinguish the small cell undifferentiated carcinomas from other "small blue cell tumors," ie, lymphomas, malignant melanomas, and anal canal "cloacogenic" carcinomas.3,5,16 In such instances, the diagnosis can be confirmed by immunohistochemistry or electron microscopy. [] I forget what "mean survival "means as opposed to "median survival" so I'll have to look that up. In addition, I would think that depends (or varies) depending on how early (or later) the cancer gets detected.
Hang in there, in case I can find something else or Steph drops by to help me to know whether I should search under a different term such as oat cell.
More to follow. J
J - 06 Jan 2004 02:46 GMT > I forget what "mean survival "means as opposed to "median survival" so I'll > have to look that up. In addition, I would think that depends (or varies) > depending on how early (or later) the cancer gets detected. Mean (survival) seems to mean "average survival". (mean survival was mentioned in one of those articles)
Median means 50 % do better, 50% do worse (on prognosticating) and prognosticating has its problems due to the other factors mentioned in earlier posts. and each individual patient/cancer is different also.
As to prognosis, some (cancer) doctors don't even discuss it unless the patient asks, much less discss hospice unless the patient is hospitalized and/or the family physician or social worker broaches the subject. The latter really isn't in their job description I think. Or some oncologists gently hint but if the patient does not want to discuss it or ignores....and see above..there are always pitfalls to prognosticating until very near the end. Sometimes hospice people are better at that. They are trained to know signs of trouble and see signs and symptoms similar to patients that they've cared for before.
Hope this helps. More later. J
JDWAT@webtv.net - 06 Jan 2004 04:34 GMT Hello J!
Thank you for all this info. I went to do some searching this evening for cancer help in her area. In my city, we have "Cancer Action" & they are wonderful! Between the cancer with my Father & my Mother, I have known about them for several years.
Unfortunately, my webtv got caught in a traffic jam (evening's are the worst time for this) & nothing would load, so I am going back to that now.
You mentioned "munging" her email should she post here & I will pass that along to her. I am unable to do this myself, but I ignore mail unless I know the person it's from. I'm able to dispose of it without opening it.
I'm going to go study & get her some info together. The first day of chemo was very long, but tomorrow shouldn't be as bad with just the "vp."
Thanks again, Maggie
J - 06 Jan 2004 13:00 GMT > Thank you for all this info. I went to do some searching this evening > for cancer help in her area. In my city, we have "Cancer Action" & they > are wonderful! Between the cancer with my Father & my Mother, I have > known about them for several years. Hello Maggie, The "Cancer Action" is a great idea and/or she may have other support resources through the cancer centre where he's being treated.
It just occurred to me since it's so rare (colorectal), we may not be getting the full story from her. A recurrence maybe... or perhaps originally CUP (cancer of unknown primary) that was treated and came back. Or perhaps not even treated aggressively enough in the beginning since what I posted earlier mentioned prostate or breast (and males can get breast cancer too). By aggressive I mean surgically, vs the standard horomonal treatment for prostate (for example). Who knows what's been happening before... (not me !)
http://www.nci.nih.gov/cancer_information/cancer_type/lung/ I was just reading about metastatic or recurrent lung cancer: the professional (version of the above) of small cell lung cancer. They mention the exact combination of the two chemos that you posted about, so it's treated the same way.
They also mention prognosis and if I recall correctly, it's 2 to 3 months if there's no response to the chemo. For all we know, he might be getting a palliative dose of chemo and/or your idea about the Cancer Action helping her is a great one. If she decides to post here, we can support her as a team. What's happening here is you and I are doing all the work and don't know all the information. If you decide to continue e-mailing with her, that's your decision.
One more thought, in case you're passing these along to her and/or she's reading, here's Steph's "Questions to Ask" I hope she will print this out and show it to her husband if the side effects get too much to tolerate. <http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=KyW97.994%243x.3689%40ne ws.bc.tac.net>
Meantime, if he tolerates the chemo well and does get a response (to the tumour) from the chemo, we (or the Cancer Action) are available for her. If he goes in for the surgery or if there's complication anywhere along the way, all she has to do is post here.
Just to be clear, I'm not cutting you off, but this is the most that I can do, until we get more feedback directly from her and/or as her husband's treatments progress, so let's wait a bit and see how things go, okay? Thanks for being there for her. J
J - 06 Jan 2004 21:45 GMT > They will use Cisplatin the first day-all day & "the vp 16 day 2 and 3" > (quote-not > sure what this means?). "then off two weeks and then round 2 with > the same thing." If I posted websites of the above, ignore them. They're website "search results" and I just discovered don't work when clicking on them. (sorry for the inconveniene, I keep forgetting that "search results" don't usually work) Here's better ones <http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualchemotherapydrug s/Cisplatin> Cisplatin and <http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualchemotherapydrug s/Etoposide> Etoposide VP16.
so it looks like he's getting Cisplatin all day one day, then Etoposide for day 2 and 3, then 2 weeks later start the routine all over again. In between, they'll be checking his bllodwork (I'm guessing) and/or she'll have to be monitoring for some of the items listed in the above two (unless they've given her a printout of what to watch for) J
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