New to group with questions

[Jenny G.]

Hi everyone,

This looks like a wonderful upbeat group and I especially like that there is a separate area for SCLC. Thank you for being here! I am a 51 year old single mom with a 16 year old son. On March 5 I went to the doctor because of sharp pain in my chest that hurt when I breathed and shortness of breath with walking. I had no other symptoms and even these symptoms went away, returned, then went away again over the course of a week or so. A chest xray was taken and a mediastinal mass was found. The doctor referred me for a CT scan the next day. Then to Pulmonologist who scheduled a broncoscopy and confirmed small cell lung cancer 6.4 cm x 4.6 cm with lymph node involvement plus a small cavity on my left lung. Next to oncologist who ordered a bone scan and MRI for the brain because this is the most typical place for SCLC to spread. They felt they could see enough on the CT to determine it was not in my liver or abdomen. I bailed out on the first MRI because it hurt to lay flat on my back for that long and had to reschedule for a week later. That was the longest wait to get that news, but both were clear. They have staged it at limited. I started chemo 3/18 with carboplatin and VP-16 (etopside) for 3 days. My 2nd round of 3 days will begin Tuesday 4/8. At this point I think they plan on 4 rounds of this. I tolerated the first round of chemo very well and in fact felt better than ever. My health otherwise is very good and since the original symptoms have had no other symptoms except fatigue which I had been experiening for some time anyway. I have been waiting to be referred for concurrent radiation and should have an appointment early next week. Now for the questions:

1) My hair is beginning to fall out and I'm debating on whether to shave it or keep waiting to see what happens. Has anyone here with hair loss only experienced thinning and not lost all of their hair? I already have a wig and lots of hats. I've heard the wigs are hot and uncomfortable and am ordering a cotton cap to wear underneath. I have only seen nylon ones in the stores. I would appreciate your sharing your experience in this area.

2) Has anyone here had the IMRT radiation? If you aren't familiar, it is more precise, less surrounding tissue damage, and less side effects. It is not yet widely available. Our local hospital has the equipment but is not using it yet. If you have had this method I would like to know where you are receiving treatment. I will have 3D conformal treatment locally and have at this point decided not to travel for the possibility of IMRT.

3) Has anyone received radiaiton 2 times a day for a shorter period instead of the usual 1 time per day? I have read that this has shown benefit for otherwise healthy people that can tolerate it. I will be asking for this but was told that it is done rarely by the doctor I will be seeing.

4) I have also read that concurrent radiation and chemotherapy has shown benefits and shoud begin the with the first or 2nd round of chemo. My oncologist is thinking of starting me the week after my 2nd round.

5) Is anyone getting Taxol for chemo treatment? My doctor says it is for non small cell.

I have taken a crash course in SCLC and realize many of you already know a lot of the information here, but hope it can help someone new to this. The internet and groups like this were my lifeline in the first days following diagnosis. Thank you all for being here, feel free to respond to me directly if you like. I think the answers to some of these questions might be helpful to others as well and the time for making decisions is short. I believe it is important to take charge of your treatment as much as you are able. Bless you all!

[ginnyd]

Wish you didn't have to be here but welcome to our wonderful group. I don't have any answers for you since my husband has NSCLC.

You certainly sound like you have done your homework - good for you.

I am sure someone here can answer some of your questions.

Again welcome.

[Guest bessb]

Hi Jenny

Sorry you had to find this group, I am new here myself, diagnosed on 2/14 with SCLC with mets to liver. I am on Irinotecan & Taxol, it is an experimental clinical protocol study. Had three treatments so far with very few side effects. No nausea, very little fatigue. I started to lose my hair this past week, I was going to wait until most of it fell out but it got so thin that I took the plunge and went to my hairdresser, I had tried on wigs before I started chemo and she ordered some but told me not to make a decision until most of my hair was gone and that she would shave it off, I did not want to do that but realized this week that it was really kind of dumb to keep having falling hair and I let her shave it off. It was not as bad as I thought and I love the wig I got. It is so natural looking that no one has said anything yet to me and it is not hot, has some type of breathable cap under it and it looks like a real scalp in the part. It is so much easier than doing my own hair I could kind of get used to it. It is not uncomfortable at all.

I am sorry I don't have answers to your other questions, hope this helps

Stay positive and take it one day at a time. I have vowed to try and beat this disease, it won't get me easy!

Bess B

[SandyS]

Jenny -

I just finished my 6 rounds of carboplatin and VP16 and YES your hair will fall out. My hair was VERY thick and long, and I decided before it even started falling out that it would be easier to deal with (emotionally and physically) if I just had it shaved. Been wearing wigs since late November.

I've never heard of IMRT. I had 6 weeks of daily radiation. 3 days short of completion, I ended up in the hospital with extreme chest pain and esphoghitis and an upper GI fungus infection - all side effects of the radiation. Spent a week there miserable. I'm only 42 and went in to this very healthy and strong, and never thought I wouldnt' make it thru treatment. So I can't imagine getting zapped TWICE a day!

Sounds like you're starting your radiation at about the same time I did, or maybe a little earlier. The conclusions are that radition is more effective when overlapped with chemo - but it is the combination that causes some of the more severe side effects.

I've had pretty good results with the carbo VP16 combo - so haven't pursued any other chemo options at this point. (Regarding Taxol)

I had a CT a little over a week ago that was inconclusive, so they scheduled me for a PET to see if it looks like everything is clear. It's hard for them to tell what's what when there's scar tissue in there and stuff!

My PET is this Friday.......won't get the results until sometime the following week..........a little nervous............

Best of luck to you and feel free to contact me with any other questions or concerns you may have,

SandyS

[Guest Jenny]

Thank you all for your replies. Bess, I'm glad you joined, you've already helped me. The hair comes off this weekend. I think my co-workers were the first to know about my diagnosis. I know they were already wondering about all the doctor's apointments and I knew they'd know something was up when I lost my hair. I ended up sending out an email to everyone I worked closely with. I was pleasantly surprised by their tremendous show of support. I still don't know if I should announce this to everyone or what. Right now I'm on a need to know basis. Thank you Sandy for your information. You're making me think twice about the 2x radiation. Do you think I might be able to continue to work through all of this? I was really hoping to be able to at least 1/2 time. I was hoping it wouldn't be so bad. Guess I'll just have to wait and see how it affects me. Was that your first CT since treatment started? Be sure to let us know about the PET results. I know how hard the waiting must be.

Jenny

[Laurie]

Hi Jenny,

Welcome.. I hope you will find these boards helpful and supportive as I have. My Mom was DX SCLC (check my signature) and her main tumor was larger than yours and the collapsed lung, she had a biopsy on a huge lymph node in her neck that showed SCLC. She had four rounds of VP-16 and Cysplatin. She had radiation on the second chemo. I can't imagine her getting "zapped twice either" she had no problems like Sandys internally but she has this beautiful baby soft skin that got burned and irritated near the end. She is very fair and her and my Nana both have the softest skin. I love to touch them.. I used to put cream on her that would help but it was uncomfortable and she was not feeling well from chemo already.. I wouldn't want her to do that.. at all. Well the good news is the scans show that she is cancerfree and is having PCI. If i can be of any help to you just send me a PM. Looking forward to seeing your posts.

Bless you

Laurie

[Deanna M.]

Hi Jenny,

Welcome to the boards, sorry you have to be here though. My mom has SCLC - extensive and has been getting chemo VP-16 and carboplatin, she is just coming up this week on her 4th treatment. She's had excellent results, significant tumor shrinkage just after 2 treatments. She hasn't had much side effects either except for fatigue the week of treatments. She usually sleeps the day away the couple of days after her treatment. But other than that she's doing great.

To answer your other questions, my mom's hair has gotten very thin, but looks good if styled correctly. She has a wig but hasn't worn it yet. I am not sure if all her hair will fall out the next round of treatments. Losing lots of her hair was very messy, so I can see why lots of people just shave it off.

She hasn't gotten any radiation, the doctor said she can't b/c her cancer is extensive.

You will love the boards,everyone here is so supportive. I am praying that you have a very easy time with your treatments.

[Guest DaveG]

Well, you have helped me with one of the decisions facing me. Last night, while at the fund raising dinner, my oncologist sat at the same table, tight across from me. Although the two of us did our best not to discuss the latest crisis I am facing, one comment, made in passing, gave me a good indication as to what is facing me. I sounds as if I will be getting chemo.

The concern of losing my hair has been foremost in my mind. I am the first generation not to be affected by baldness, in our family. My father was bald, both grandfathers wer bald, and I understand that male baldness goes back many generations in my family. So here I am, facing, not natural baldness, but chemo induced baldness. I like the idea of getting my hair shaved off, the second I start losing my hair. I also like the idea of having one less thing to take care of each morning.

[Guest]

Hi Jenny,

I have had 2 bouts with sclc and both times I have lost my hair..I found that shaving my head was much more comforting than it coming out in clumps....Also, the first wig I bought from a wig store was $200.00. I then bought one from the American Cancer Society Catalog for about $30.00..It was just as good as the expensive one. After 3 years with sclc I have found out that the American Cancer Society gives wigs FREE..I went to their local office and tried on many and found one that was just perfect for me. (Altho my kids are kind of freaked out of my being a blond!).

As for radiation, I had the choice of going for 30 rounds in 3 weeks or 4 weeks..I chose going in the morning at 7:30am and then in the afternoon at 3:00 pm.. Worked for me. But my hospital was close to my home so I didn't have to travel that far.

Best of luck to you, my prayers are with you.

Fran

Note to Sandy....luck with your PET..............

[Guest]

Hi Dave,

You will be right in style with your new buzz.........Handsome devil you will be!!

Fran

[Candy]

Hugh already kept his hair "buzzed". He also has ALWAYS worn one of those welders hats - he has a collection of them like most men have ties (and he probably only owns 1 tie). Anyway, most people don't even notice that he doesn't have hair now and our sons are actually jealous because he is "way" in style. Here is the best part (looking for bright spots in this nasty place we find ourselves) - he doesn't have to shave!

[JudyB]

Jenny, I didn't have SCLC, but I did have carbo/taxol along w/radiation. Both those drugs cause hair loss. In the treatment area I met a woman whose chemo only caused hair thinning. I would ask the nurses in chemo if the drugs you are getting cause losing or only thinning. If you do lose your hair, go to www.paulayoung.com

Their wigs are very reasonable and look great!! I got a whole bunch, so no one would know if they were going to see a blond, brunnette or redhead!

I've heard good things about 2x daily radiation, but I had it only once a day.

Good luck to you, Jenny.

JudyB

[Guest hopeful2]

Jenny, I was dx. in Nov. with 1st round of chemo early Dec. My hair started falling out Christmas. I too found it better to just shave my head because of the all the mess the hair made in the tub, the bed, etc. I hate wearing this wig. I feel like I need a sign that says "YES I'M WEARING A WIG." But probably just because I don't feel comfortable. Not because anyone else even notices unless they knew me before.

As for working, I thought I was going to during tx. too, but it was just too much. I am a RN and manage a large dialysis clinic. Most of my work was mental but I just could not focus as I needed to. The chemo and radiation combo is draining, but effective. I finished 6 rounds of chemo this month and had a clear scan. And I am now back at work !!!! I was lucky since I was in management and received full salary while I was out. Believe me that helped.

Prayers your way for a good treatment course.

[mainecoon]

Two days ago my wife noticed that there was quite a bit hair in her brush. I watched her pull out strands. It seemed to break off a few strands at a time, rather than coming out in clumps.

Fortunately, we'd already ordered a wig from http://www.fekewigs.com/index.htm . I also ordered a nightcap from http://www.headcovers.com/htm . The accessory package they offer includes a basic wig stand, which my wife tells me is a handy thing to have.

Now, my wife's hair began to thin about two weeks after her treatment with Carboplatin and Etoposide. I understand Carboplatin doesn't generally cause hair loss, but Etoposide is bound to. I'm glad we were prepared for this eventuality. I just know that my wife would feel extremely self-conscious being wheeled through the lobby of the U of M Hospital on her way to the infusion clinic if she were totally bald.

[bart ziggie ( Greg )]

Jenny,We could duplicate your story and it would also tell mine down to the tee with 1 exception.I was diagnosed on 3/10/03.Otherwise my story thus far is exactly the same.I just finished my third round of meds.I also felt great after my first round..... better than i had in years actually!About the third week after my first round i started experiencing hair loss also.I can just imagine it is awfully tough for a woman to go thru this and you have my utmost regards.Rather than risk embarassment i shaved my head completely.I dont want to seperate sexes here but the difference is clear when it comes to hair loss.The single biggest things that bothered me about this is facial hair.I have always wore a mustache.Now i dont have one but it is ok.I also dont have to shave daily and when i do shave it is simple now.I knida loike that aspect!One more thing that i wasnt too fond of is losing the hair on my legs.I dont wear shorts now just because i am not chosing to.Is this a sign of embarrasment ? I dunno ! Well anyway i am glad you have found this forum as well as myself and others.This board is awesome and i check here daily just like i take my meds i feel this an essential part of my recovery.Hope to see you soon and often !

Greg

[Jenny G.]

mainecoon,

Your wife is on the same chemo that I am. I was told I would loose my hair in about 2 weeks after the first treatment. I got my hair cut short first. It took a little longer before it started coming out a handful at a time when I combed. I had bought a wide tooth comb. It never was a problem in the shower or on my pillow case (satin). I now think I was a little premature at buzzing it off with the electric clippers. I never did loose all my stubble, but I could tell I would have had some pretty thin spots. I never lost any other body hair either although many do. I still have to shave my legs, so I didn't get a break there. Some people don't seem to be uncomfortabe with their baldness, but I'm not a very attractive bald person and it still shocks me everytime I look in the mirror. My son is not comfortable seeing me bald and prefers the wig. When I'm at home I wear a simple soft turban cap. I'm discovering a lot of interesting things you can do with scarves and having fun experimenting with different wrap styles. Long narrow scarves can be wrapped around your head twice and tied in the back. Some are actually quite elegant. The wig doesn't bother me, but I am glad to get it off at the end of the day. I will be staring my 4th round of chemo on Tuesday and I'm already seeing new hair growth. I've heard it often comes back curly when it was previously straight and may be a different color, but I think it eventually gets back to normal. It will be a good chance for me to experiment with different styles. (Always try to look for the positive.) I hope that your wife will find benefit from the chemo as I have and not have too many of the bad side effects. I'll be thinking of you both and wishing you the best of luck.

Bart,

I had my xray on March 5, the ct on March 6, and on March 10 the pulmonologist told me it was small cell from looking at the ct. So I guess that was my official diagnosis day too. He did the broncoscopy the next day. My first visit to the oncologist was March 13, first chemo March 18 because I have it Tues, Wed. & Thurs. I just found out that I will have 6 rounds too. On my last vist doc said I was doing great, they thought I would be doing much worse so I'm feeling pretty good right now. He told me he didn't see any reason I couldn't be one of the ones that make it 5 years. I'm jealous of your legs! I'm glad we both found this place too, I check here everyday and it has helped me so much to stay positive and not all alone in this. Be sure to keep us updated on how things are going. I'm looking into info on vaccines now, but it looks like a long shot.

Jenny

[mainecoon]

Thanks for the info, Jenny. My wife goes in for her second session on Wednesday. She was hoping to feel much better by now, and the fact that she feels extremely weak and in a great deal of pain discourages her. The doctor who strongly suggested that she undergo chemo gave her the impression that she would feel significantly better after the first session. When this didn't happen she felt totally defeated.

Oh, by the way, the pain is mostly under control using a Duragesic patch (Fentanyl). Great stuff, in that it gives effective pain control without grogginess or impaired judgement. Just don't expect to get it at your local Rite-Aid. Most retail pharmacies don't carry it. We could only find a store that has it thanks to the efforts of my stepdaughter.

My wife was hospitalized for about six weeks, beginning in the middle of February. This was for a persistent pain in her lower back and left flank. Before this she was an extremely vital person. She could even settle on the event which probably caused her back pain. After numerous diagnostic procedures the doctors concluded there was visible reason for her pain. In the meantime she lost 20 percent of her body weight, much of it muscle mass. Even when the doctors at University of Michigan finally diagnosed SCLC they were divided as to whether or not it could cause the pain.

Anyway, I've tried to encourage her by gently reminding her of the positive aspects of her treatment: her hair loss was to be expected, and not a defeat because of anything she did wrong; she has had almost no nausea thanks to the antiemetic they give her prior to the chemo; her appetite is good, thanks to the megesterol; and she gets stronger day by day by eating more and walking around unassisted. But she compares these small victories to the way she was before she went in the hospital and dismisses them as irrelevant. She thinks I'm just zooming her.

Sigh. . .

I guess all a caregiver can do is to continue to gently remark on the positives and nurture whatever hope there may be.

[Candy]

The doctor told my husband that he would feel better almost immediately after his first treatment also, and he did not. It was rather discouraging for him. The improvement was there, just not enough for his liking. After the second he was feeling better though. Now he complains about being tired all the time. I have to remind him that when all this started he was in such excrutiating pain that he hardly slept at all and he kept saying "if only I could sleep". I agree - sigh..... It seems if it isn't one thing its another. I must end with a positive note though, Hugh is so much better, he is able to mow the lawn, putter around the house and yard (inbetween naps) and is 100 percent pain free with the 10 mgs of oxycontin.

[mainecoon]

Now that is positive news, Candy. I've got to tell my wife that she shouldn't get ready to throw in the towel just yet.

She's told me that she could live with the bleak prospect of her diagnosis if only she could move without all the weakness and pain. Then she'd be able to do some of the thngs she wants to take care of before it's too late.

I keep hoping that this upcoming session will shrink the tumor enough to remove pressure on the peripheral nerves which are causing the pain. To me this is something positive to anticipate from the chemo. Unfortunately, for my wife this would only be confirmation that the lung cancer is causing her pain.

Trivia for the older and wiser: Does anyone remember tha name in the Li'l Abner character who always walked around with the little cloud of rain over his head? No fair using the Net or the big lavishly illustrated Li'l Abner book someone gave you way back when.

[debbie412]

my mom was dx w/ sclc w/ mets to adrenal in jun of 2002. She did 6 rounds of chemo, then went for a pet and showed significant decrease in lung and a spot on the adrenal that was cancer free. He sent her for radiation. Six weeks after radiation she took another Pet and saw no significant change in the lung and activity in the thoracic region. Was her PET too soon to tell? Did she really ever have cancer in the adrenal? Did she get the right treatment, or should she have had chemo and radiation at the same time? I am so confused. She is to meet with her doctor next week. If anybody can help me it would be greatly appreciated. Thanx for listening.