Treatment protocol

[Summer]

Dear OncoDoc, Teresa, John:

I find myself terribly confused as to the way my partner's treatment is progressing. He experienced severe stomach pain and bone kind of pain in the neck/shoulder 2 weeks after the second chemo (CAV). Doc suspected constipation side effects of Vincristine, but laxatives and subsequent bowel relief did not ease the pain. 3rd chemo was yesterday (back to Carbo/VP-16) and Doc now thinks pain may be due to liver involvement. X-ray showed progression of disease in chest. Doc agreed to doing a CT scan, but doesn't think there's much point in doing PET or MRI. He prescribed the duragesic patch, oxycodone and a sleeping pill, and the pain is greatly relieved.

Still I'm left with some questions that haven't been answered - and am hoping you might have some input:

1) Is stomach pain/bone pain not also a side effect of Vincristine? The drug information sheet tells me so. And, isn't Topotecan a better alternative to CAV, with less side effects and better symptom relief? Doc says he probably won't use CAV next time but did not tell us of a specific alternative drug, only that there are about 100 out there.

2) Initially Doc had reported what he thought was a slight improvement on chest x-ray after the 1st chemo (hard to tell, they had misplaced the earlier x-ray so no way to compare), yet the latest film shows progression of disease. Would it make sense to go on to a different drug now, rather than continue with the current regimen?

3) Considering the lack of response to these chemo drugs, could it be that this is mixed cell lung cancer? I understand different drugs would be used then. Biopsy had been done on a lymph node under the clavicle.

4) Last WBR treatment was 10/19. When would a follow-up MRI be indicated?

I probably need to work on being more assertive and getting my questions answered at the doctor's office. I understand that the prognosis is poor but we still want to fight. Doc doesn't talk much and is not very forthcoming when we ask questions I probably need to work on being more assertive in getting answers.

Any input you might have is much appreciated.

Summer

_________________
S.O., 57, diagnosed ext. sclc Oct. 04
3/30/05 - After 6 months of treatment my love has passed away. I treasure the time we had together.

[teresag]

Hi Summer,

I'm not the one to answer your questions about specific drugs and their side effects and usage, but I might be able to help you in communicating with the doc.

First, always write down the 2- 3 questions that are most important BEFORE going to the office visit. You may not have time to get 5 or 10 questions answered, but every doc should take a few minutes to answer 2 or 3. If you have them written down, you cannot forget them! And no one will think less of you for it; believe me. I forget what to ask when I'm in the examining room myself. It is a completely human and normal response to forget the important stuff during an office visit.

Another strategy is to write down your questions and HAND them to the doc as he enters the room. I'd suggest that you do not give them to the person (usually a medical assistant) who shows you into the room; they may or may not get into the doc's hands that way. Try to be brief and succinct. No one can answer what the future will hold, but any decent doc will answer why the current treatment was chosen and what the next steps will be. These are basics; you deserve this much.

Good luck to you! And keep fighting the good fight, Teresa

_________________
My Dad died of NSCLC in 1998. (Miss you, Pop.) Pic taken from my kitchen window at sunrise. I'm a clinical nurse specialist, researcher and educator. I practice nursing in medical intensive care. Symptoms and illness perception in lung cancer are my areas of research. Finished my PhD in nursing in 2004; some of the wonderful people on this site helped me - thanks!

[Summer]

Teresa,

I appreciate your response. I'll be sure to bring my written questions to the next appointment, and will press for answers.

_________________
S.O., 57, diagnosed ext. sclc Oct. 04
3/30/05 - After 6 months of treatment my love has passed away. I treasure the time we had together.

[oncodoc]

Hi Summer, I'll try to address those one at a time.

1) Stomach/bone pain is not a common side effect of cytoxan, vincristine or adriamycin but can happen. I agree with your partner's doctor that when someone is having abdominal pain on that treatment regimen, I usually worry about neuropathic changes of the small intestine causing constipation and pain. Any chemotherapy can result in bone pain due to the recovering bone marrow after the blood counts drop but that usually happens in the second week, not right away. I agree that topotecan is probably a more tolerable drug and in fact a randomized study comparing them head-to-head showed less toxicity with at least as good of outcomes with topo.

2) Hard to say without knowing more detail about the xrays. In principle, I do agree that sticking with a chemo regimen if the cancer is showing definite signs of progression would not be my choice with an aggressive cancer like small cell.

3) It's possible. There are often components of NSCLC that coexist with small cell. If the cancer appears to be acting aggressively or if the sodium level in the blood is low, it is very likely that this is still small cell. If it seems to be growing more slowly then NSCLC would be possible. There are some drugs that are effective for both (taxol for example).

4) Small cell is so radiosensitive that I usually wait about 3 months to get a follow-up MRI. This gives the radiation enough time to "do its thing".

I know this is a hard situation and there is more than one "right answer" when choosing treatments.

_________________
Joe

[Summer]

Dr. Joe - thank you. Your input is helpful and much appreciated.

_________________
S.O., 57, diagnosed ext. sclc Oct. 04
3/30/05 - After 6 months of treatment my love has passed away. I treasure the time we had together.

[jcawork]

Dr. Joe,
You mention low blood sodium as a sign of small cell, why?
Thanks,
Jen

_________________
Jen
6/04 dx w/ limited sclc one 4cm tumor right lung w/ hilar node involvement 5cm node.
(Dx missed on 4 xrays for 6 months)
6/04 Cis and Vp ear reaction
7/04-11/04 Carbo and VP
34 Chest rads
Mild esophogus issues, but did develop wheezing, asthma and severe cough from radiation (early pneumonitis) during last week which has lasted 6 months
11/04 NED for now! Some radiation damage showing-
chemo break for Nov. low counts
12/04 2 doses of CPT-11
1/10/05 CT scans-NED
DONE WITH CHEMO!
3/05 CT/PET fusion shows Ovaries are lit up-unsure
both ovaries and triple in size Chest remains NED
4/05 2 brain mets
new 1 cm nodule in left lung, bilateral enlarged ovaries
Liver met on PET is false per MRI
WBR X 20-wiped out from ear inflamation from WBR-steroid ear drops to resolve
Start Topotecan 5/31/05
6/05 Top round
MRI of T-spine shows met thats been there for a while causing great pain
15 days of Rad to back
also have severe bowel pains-full work up no idea why-nothing seems to help except during chemo week I am pain free?
7/05 CT/PET Fusion
Nothing new, some reduction
7/05 Topo
8/05 Topo
9/05 Topo
9/05 rescan we think stable
10/05 Topo
11/05 Topo
11/05 Rescan- it is in my liver and radiating ovary which is suspected as met and pushing on ureter tube-pelvic pain
43, 5 kids, great husband, incredible sister and friends
Emailing is easier
jcawork@aol.com

[SDianneB]

[oncodoc]

Small cell lung cancer arises from hormone producing cells in the lung. They often continue to produce hormones after they become cancerous. One of the most common is a hormone called antidiuretic hormone (ADH) which when produced in excess results in the syndrome of inappropriate antidiuretic hormone production (SIADH). This results in the body retaining too much "free water" which dilutes the sodium in your blood causing hyponatremia (low sodium). The trick is that the sodium is not really low, there is just too much water in your body making it look low due to dilution.

_________________
Joe

[jcawork]

Thanks for the answer. Does that mean NSCLC does not arise from hormone producing cells like SCLC? And if I can be really a pain, how does smoking w/ SCLC relate to the hormone prodcuing cells.

In my story, I had horrible and bizzare hormone symtoms for a year prior to dx. Severe flushing, spiking blood pressure (200/110), then a few hours later it would be normal, dark pigment changes on my face, a rash on my face, rapid heart beat on and off. Got tx for everything but LC. One ER Doc got close, he suspected an adrenal Pheo (sp) and did an MRI- negative. I later researched this after LC dx and found that they also grow in the bronchials and that should have been a next step. Carcinoid tumors- is that sclc?

As you can see, I m still confussed about how this cancer, sclc actually starts and how it is different from how nsclc starts. I have a feeling I am not alone. I know smoking is involved, but how does it make it happen and why are ther fewer people w/ sclc?

You probably want to smack me for all of these questions

Thanks,
Jen

_________________
Jen
6/04 dx w/ limited sclc one 4cm tumor right lung w/ hilar node involvement 5cm node.
(Dx missed on 4 xrays for 6 months)
6/04 Cis and Vp ear reaction
7/04-11/04 Carbo and VP
34 Chest rads
Mild esophogus issues, but did develop wheezing, asthma and severe cough from radiation (early pneumonitis) during last week which has lasted 6 months
11/04 NED for now! Some radiation damage showing-
chemo break for Nov. low counts
12/04 2 doses of CPT-11
1/10/05 CT scans-NED
DONE WITH CHEMO!
3/05 CT/PET fusion shows Ovaries are lit up-unsure
both ovaries and triple in size Chest remains NED
4/05 2 brain mets
new 1 cm nodule in left lung, bilateral enlarged ovaries
Liver met on PET is false per MRI
WBR X 20-wiped out from ear inflamation from WBR-steroid ear drops to resolve
Start Topotecan 5/31/05
6/05 Top round
MRI of T-spine shows met thats been there for a while causing great pain
15 days of Rad to back
also have severe bowel pains-full work up no idea why-nothing seems to help except during chemo week I am pain free?
7/05 CT/PET Fusion
Nothing new, some reduction
7/05 Topo
8/05 Topo
9/05 Topo
9/05 rescan we think stable
10/05 Topo
11/05 Topo
11/05 Rescan- it is in my liver and radiating ovary which is suspected as met and pushing on ureter tube-pelvic pain
43, 5 kids, great husband, incredible sister and friends
Emailing is easier
jcawork@aol.com

[SDianneB]

[teresag]

Jen, you describe symptoms of hyperaldosteronism, which means excess hormone produced by the adrenal glands. So the ER doc was on the right track. SCLC is called a neuroendocrine tumor, i.e., hormone-producing, and it does usually arise in the bronchi, or the larger airways. These cancers can produce many hormone-like substances that play with electrolytes such as calcium, drop blood sugar levels through insulin-like hormones, and play a whole host of other nasty tricks.

Carcinoid tumors are neither small-cell or non-small cell. They are neuroendocrine tumors, like SCLC. You might find this ACS site useful:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_lung_carcinoid_tumor_56.asp?sitearea=

_________________
My Dad died of NSCLC in 1998. (Miss you, Pop.) Pic taken from my kitchen window at sunrise. I'm a clinical nurse specialist, researcher and educator. I practice nursing in medical intensive care. Symptoms and illness perception in lung cancer are my areas of research. Finished my PhD in nursing in 2004; some of the wonderful people on this site helped me - thanks!

[soccermom]

That is so interesting. Six months prior to my mom's diagnosis her thyroid medicine (Synthroid) was giving her trouble. The dosage was all wrong suddenly after 20 years. Her Endo doc, who is excellent, ran lots of tests, including checking her adrenal function which was normal and ended up adjusting the dosage. She also developed a sudden orthostatic condition and was treated for that. The endo doc was ordering an MRI of her neck and chest, however her tumor was found prior on a routine xray for surgery clearance. Wow, I wish I had known about all this. Thanks for sharing all this info.
Nancy

_________________
"I believe in mind over matter
I believe in miracles and blessings,
both great and small
I believe in the human spirit to prevail..."

83 year young Mom diagnosed with SCLC...now 84!
Jan 2004-cardiologist finds shadow on routine x-ray
CT confirms 3cm tumor and 3/4 cm node mid chest.
1/20/04 needle biopsy confirms SCLC
CT of head, abdomen clear
Bone scan-questionable L3
CT of Lumbar region clear
2/4/04-Chemo begins-Carboplatin/VP-16
3/3/04-PET Scan-all clear except known areas in lung/chest.
3/3/04 Second round of chemo begins
3/30/04 Third round of chemo
4/20/04 Fourth round of chemo
5/11/04 Fifth round
6/1/04 Sixth round
Bone/bone marrow biopsy results-all clear
6/04 CT scan-tumor gone
8/04 completed radiation
9/04 CT scan shows .4cm nodule, watching
all other areas clean
11/04 CT scan shows .6cm nodule
PET scan negative-more watching
Old tumor area lights up but suggests inflammation from rad....watching, and getting on with living!
4/05 CT scan of lungs NED
10/05 CT scan of lungs
NED, "renewing magazine subscriptions" I love this lady.
11/05-CT of spine back-NED
Bone Scan repeated due to lower back pain-NED, next appt 3/06.
4/06 Clear CT Scan of lungs and abdomen NED
Lost wonderful Dad to lung cancer 3/88.

"For the sake of His sorrowful Passion, have mercy on us and on the whole world."