New to the forum - 1266607

Tue, 10/21/2014 - 17:55

Hi all,

I am a graduate student at the University of Massachusetts with a father who has just been diagnosed with Stage 4 Adenocarcinoma of the lung. My father had a rough summer with some chronic neck pain, which was first treated with multiple rounds of antibiotics as his primary care doctor thought he had lyme disease (maybe he did). In the last month or so he saw a ear, nose and throat doctor who quickly ordered a scan of his lungs and lymph nodes. Today he met for the first time with his oncologist after having multiple scans this past week after finding the cancer in his lungs. I imagine his treatment could change based on the pathologist finding any known genetic mutations. Not an easy diagnosis to start off with but hopefully the radiation therapy will relieve some of his discomfort. Just thought I would share his diagnosis with you folks and the preliminary treatment plan. I imagine I will have more questions after I do more research.

best,
Kris

Chemo – probably Carboplatin and Penatrexate 21 day cycle
4-6 chemo cycles of 21 days—then maintenance as needed

Radiation Therapy- To treat boney lesion at base of skull, C-1
• 10-15 treatments total
• To help with pain, swallowing, and tongue
• May get fatigue and sore throat
• Neurosurgery will review MRI to make sure treatment will keep neck stable.

To have: MRI of entire spine

Pathologist is reviewing sample of tumor to determine if the tumor has genetic mutation- if so this will help them choose the appropriate chemo therapy

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Dr West

I'm sorry to hear of his diagnosis. The treatment that has been recommended, at least tentatively while waiting for the results of the molecular testing, is a very appropriate one. I hope he feels better soon, and I especially hope he responds well to treatment.

We'll be here for further questions as they emerge.

Good luck.

-Dr. West

kris

Hi folks,

Just wanted to give an update on my father. He just finished 10 days of radiation on the boney lesion at the base of his skull. The radiation seems to have relieved symptoms from that cancer pressing on his occipital nerve. Still a bit shaky and has had bad hiccuping episodes some nights (I think from the tumor in the lung), but I think he is feeling a bit better. He still has no appetite (has lost 17lbs total) so I made him some pot butter this past weekend and he should have his medical marijuana card by the end of this week. Hopefully that will help give him a little bit of an appetite. Not sure if they will just give him edibles with the lung cancer or if it is ok to smoke out of a vaporizer?. Found out today he was positive for the genetic mutation so going to start on Tarceva and not do the chemotherapy. I think his first good news in a while:). I know Tarceva can have some bad side effects but do most folks feel much better just taking the Tarceva vs. the chemo? He will also be getting some shots in his neck to restrengthen the bone.

best,
Kris

JimC

Hi kris,

I'm happy to hear that the radiation has helped your father's symptoms, and that he has an activating EGFR mutation. I hope that he has a great response to Tarceva. It's hard to say that side effects are necessarily less with Tarceva - they're different. Although patients don't tend to have as much nausea or low blood counts, for some the skin issues and diarrhea are quite troublesome.

Best to your father and you.

JimC
Forum moderator

Dr West

I agree. After treating hundreds of patients with both Tarceva (erlotinib) and chemo, I'd say that Tarceva tends to be better tolerated than many kinds of chemo in most patients, some patients have a hard time with Tarceva, and others find chemo very easy, so it really varies. Having an activating EGFR mutation is associated with a high probability of a very good and often long (months to sometimes years-long) response to an EGFR inhibitor like Tarceva, so it's a very attractive option to pursue.

Good luck!

-Dr. West

kris

Hi folks,

Just wanted to give an update on my father. He has been on Tarceva now for close to two months and has his first post Tarceva scan in less than two weeks. It seems like the cancer has responded positively to the Tarceva and side effects from Tarceva are not too bad. He has a bit of a rash but nothing too serious.

The thing he is struggling with most is lack of appetite and having to force himself to eat everyday. Not sure if that is due to the cancer, Tarceva or both. He has been experimenting with different strains of medical marijuana but that doesn't seem to be helping all that much. Just curious if folks have found anything that has helped them with their appetite? Fortunately he has gained some weight back over the past few months. Someone recommended taking the Tarceva at night instead of in the morning but I'm not sure how his doctors would feel about that.

best,
Kris

catdander

Hi Kris, It's great to hear that your father is doing well. It happens that many people begin to feel better very soon after starting tarceva and it's a good sign that it's working.

Lot's of people have appetite issues with cancer and anti cancer treatment. My husband's appetite 2 1/2 years since last treatment has changed so much that while he's gone back to same old types of food he's continues to be much more sensitive to salt and still has trouble with appetite. I can't speak to medical cannabis as it's illegal in Alabama but he has excellent outcome with magace. There are many threads on the subject of eating tips. Our search feature is my favored tool to use for finding info on Grace though browser types seem to cause problems for some. This is list of results from just “appetite” and has lots of good info http://cancergrace.org/search-results?q=appetite

What I’ve learned here and with my husband (mostly the same), eat small meals, look for foods that aren’t the norm for your father, sometimes blander is better. High fat adds calories without having to eat quantities, though there is def a percent content that is too much. Icecream and potatoes are good. Ensure plus or one of the knock offs are still part of my husband’s diet. I wish I could find an old thread that had a great discussion on bacon. I was so pleased to find others agreed that adding bacon or bacon grease to as much as possible was a trick that was possibly the best thing I found to help.

Over the counter meds can be very helpful for diarrhea and can be taken before going out for extra protection to possible probs when out.

Many people take tarceva at night. There shouldn't be a reason why your dad shouldn't but always speak to the onc just in case.

The best to your father,
Janine

Dr West

No easy answers on eating, but we have a series of podcasts about diet suggestions. Janine highlighted the search for appetite. Aside from high calorie nutritional supplements, taking smaller meals frequently sometimes helps.

In general, we don't have any issues with people taking Tarceva (erlotinib) early in the morning vs. late in the day or any other time. The main issue is to take it at a pretty consistent time of day and on an empty stomach.

Good luck.

-Dr. West

kris

Hi folks,

Thought I would give you an update on my father. Good news!! He had his first scan a couple of weeks ago after 9 weeks on Tarceva. The tumor in his lung has shrunk in half and there is evidence of healing in bone lesions. Also, now there is no sign of cancer in lymph nodes and adrenal gland. On top of that he has been gaining a bit of weight with the help of all of those shakes. It has been pretty amazing to witness as it seemed he was in a rapid decline this past Fall prior to the start of treatment with Tarceva.

best,
Kris

JimC

Hi Kris,

Thanks for the update, with such great news! We always love to hear good news, so keep it coming!!

JimC
Forum moderator