I have 2 questions:

[AnneBurris]

Hello Everyone

My mom started her second round of chemo yesterday, that meant we got to visit with her onc again (first time since the dreaded day we got her news). Anyhow, we did receive a good report in that her liver swelling was significantly reduced and she seemed to be reacting to chemo well. I had a list of about 10 questions to ask him, and he was already running 1/2 hour late, so you can imagine what he was thinking when he saw me and my list. It was rather frustrating because he basically backed himself out of the room before we could finish asking our questions - i guess my mother's life is only worth 5 minutes of his time instead of 10. Anyhow - I thought, that's ok, i'll just go back and ask my friends at the message board, they have a bed side manner a gazillion times better than this onc, and they probably have more cumulative experience. So....here's the question. First, my mom is going on 2 of 6 rounds of chemo which is VP-16 and Carboplatin. The onc did agree that Cisplatin was more effective than the Carbo, but that putting her through that when she was a hopless case (not his exact words, but the message I got), wasn't worth it because the Cisplatin would have worse side effects. My question is can she change chemo combinations in mid-cylce? My second question is concerning xrays. He said xrays would be done at the end of the 6 cycle which is in six months, is that normal or do most people have them done at 3 months? Oh, i guess I do have one more question..My mom is currently insured under my dad's health insurance, so that's not a problem, but should she be applying for any other benefits such as Medicair, Medicaid or Social Security? A friend of hers told her to look into that.

Anyway, I thought yesterday was good for my mom as far as positive news about her liver not being so inflammed. I bought her a dozen yellow roses and a card of encouragement and left it by her bed so that if this round of chemo makes her sick this time she can look at them and hopefully draw some sort of good emotion. She is so precious to me. Thank you to anyone who takes the time for these questions. You guys are the best.

[shelliemacs]

I applied for my moms SS disability benefits and she was approved the same week. of course they make you wait 5 months for the first check which she got this month.

I think Lung Cancer is almost an automatic approval.

My mom has an x-ray before the start of every chemo to see any progress and then so far only 1 pet scan and numerous MRI's and blood work

I too stalk my mom's onc. he walks into the room and see me and sigh's but I am informed and ask questions and write everything down. I want him to know I am not some slacker who is taking what he says at face value.

[kimblanchard]

Happy to hear your mom's news. I think I would be looking for a new oncologist for your mom if I were you. Any doctor who cannot spare the time to answer your questions is not worth Your time! I don't know the answers about the chemo questions but I believe she should be scanned more often than what your doctor stated. I have been scanned once a month for the past two months since I started chemo. I am also looking for a new oncologist because mine is leaving to move to california and it is difficult but I think you should do it.

[Candy]

I surely can't tell you if what your doing is right or wrong but like Katie I can share with you how it works for my husband. His diagnosis is much like your mother's. He is also receiving VP16 and Carbo (3 days of treatment, approximately 2 1/2 wks off is 1 round). The plan was for him to have 6 rounds of treatment. He received 3 rounds and went for scans. There was an "impressive improvement" in our doctor's words. He had three more treatments and there was a "significant improvement". Since he showed such improvement the doctor suggested 2 more rounds but left the decision up to us. We decided to go for it. He just finished his 8th round yesterday and is still feeling pretty well considering what he's going through. He lost almost 50 pounds at the beginning but he gained 11 pounds during the last 1 1/2 wks, he has had no nausea, his appetite continues to be normal and his blood counts look pretty good. He is set up for more scans on June 17 and 18 (Bone scan, MUGA scan and CAT scan). The doctor says if the scans show improvement he would like to consider yet more of this same treatment. The carbo seems to be working for Hugh. I don't know if you can change in mid-stream.

Hugh applied for Social Security disability. He was very reluctant but I think if they can concentrate on just dealing with the chemo and beating this monster they are better off. I would hate for Hugh to have to worry about trying to work also.

Good luck! It sounds like you are doing all the right things for your Mom. She is as lucky to have you as you are to have her

[mainecoon]

My wife's therapy is almost identical to that of Candy's husband: 3 days of Carboplatin and VP16 (Etoposide), with 2 ½ weeks off. The oncologist told us he'll do another scan after the third or fourth series. This made sense to us, because we figured that the effects of the chemo would not be readily apparent for 30 - 90 days.

She's being treated at the University of Michigan Cancer Care Center by an oncology team. At the time of her second consultation we received less attention from the oncologist proper, but this didn't seem to bother my wife. She's usually acutely sensitive to these things. But it was more important to her to have an attentive Physician's Assistant. As far as she's concerned the Assistant is the one who'll be making the real decisions regarding her treatment.

I asked the chemo nurse administering the medication why a doctor would choose one medication over another (in this case VP-16 over Taxol). She said that she's wondered this herself, but in all the reports she's prepared in tracking the clinic's medication she could never find a pattern which would fit a particular medication to a particular therapy. Maybe there isn't, and maybe there is but she hasn't found it.

As regards Medicare A and B, my wife was always under the impression that whatever care she received in the hospital is covered by Medicare A, so there's no reason to pay extra for part B. Well, I found out this varies from state to state. And in Michigan Part A does not cover any radiological procedures. We have to rely upon another insurance for all the scans. Besides that, our primary carrier does not provide for PET scans unless the doctor determines that it is medically vital. Sheesh!

[debbie412]

My mom has a scan every 3 months. She had Cis-Platin and never had any problem, in fact her appetite was better than ever. I have 3 small children, twin 2 yr. olds and a 7 month old, and after her treatments we always went shopping or out to eat. If she could handle that then you know she felt pretty damn good! Another good tip is she has been taking Coral Calcium. This is a supplement that is all natural and known for giving energy, bringing oxygen to cells to kill cancer cells, and for slowing down cancer cell growth. You can look it up online. My mom swears by it. She did not even lose her hair!! Cancer has not changed my mom physically only mentally.

[Maria]

Anne,

My father had the same chemo "cocktail" that your mom is on -- VP16 (etoposide) and Carboplatin. He would be on a week (infusions 3 times that week) and then off two weeks. He did a total of six rounds. He experienced great results -- 75-80% skrinkage of his tumors. He was also part of a clinical trial for his first line of treatment -- in addition to the VP16/carboplatin he received infusions of a genesense. I have not checked the clinical trials for quite a while now, but I believe that it would still be open. My dad was treated at UofChicago. What is involved with genesense is a "pump" that infuses the medication to the patient 24/7 for a week's time. It is delivered through a port-a-cath (what your mom probably has in order to get her chemo delivered) and the patient can go about their daily routines. The medicine is in a medium-size packet and is stored in a "fanny-pack" like bag. My dad would keep under his shirt and no one even noticed it. It isn't a chemo agent so there are little to no side effects and definitely worth looking into. My dad's docs believed it helped him with his first line of therapy.

ALSO...(in case you hadn't read my other posts)...ask your mom's oncologist to do a c-kit test on whatever tissue they used to diagnosis and stage your mom to see if Gleevec would be a possibility.

One last thing...and this is just a tip ... you sound like me and my sisters in that we had a millon and one questions for my dad's doctors. And, damn straight you should!! You have to be your mom's and your own advocate no matter how great the doctor. So, if you feel rushed or that the doctor isn't able/willing to give you enough face-to-face time in the office to answer your questions -- ask/tell him you will email him your questions to him. that way, you have time to think through your questions without feeling rushed and you will have his/her answers on paper so that you can refer back to them. You have to be a little pushy but it is well worth it!!

take care and I hoping for the best for your mom and your family!

[kimblanchard]

Anne, I was switched from Cisplatin to Carbo after my second round because of blood clots. I was scanned at 3mo and the end of 5th month. The Carbo/VP16 did the trick because my second scan was clear. Actually my 1st scan showed it had reduced from 6cm to 1cm. So the Cisplatin and Carbo worked equally well for me. I am limited stage only though.