I had two nodes removed in left groin. Squamous cell. So far can't find primary. On pet scan showed either inflamation in groin area from surgery or residual cancer and two small nodes in iliac area.......I am so scared......I had hodgkins lymphoma 23 yrs ago. I am 50, going to Dana Faber on Boston MA on Friday. Can anyone give me some uplifting stories....I was reading good posts from Ruth.....hoping she is still posting.....thanks everyone.....I'm really out of my mind.....I can't function.....
Thanks Ruth....so our issues are alittle different....but do you think it's that much worse that mine was in two groin nodes and two illiac nodes....I am so nervous treatment hasn't been started......now I'm freaking about a MRI og the brain! Why? Well could be because of me.....I did say to the doctor why didn't you do a MRI of my brain or check bones....he said it wasn't needed.....today he scheduled it?? My husband said he did it just to ease my worries....??? Right now I only have your story to hold on to.....wish there were more positive stories.....well trying to sleep....MRI at 9...... Talk soon......thanks Ruth
Cindy Ps. What tests did you have when they were looking for the primary?
I'm not sure where the "iliac" nodes would be, but I suspect near the groin?
Okay, here are the tests I had:
CT scan of chest, abdomen and pelvis.
PET scan - entire body
cystoscopy of bladder
intravenous pylogram (scans kidneys)
pelvic exam including endometrial biopsy
I had just had a colonoscopy only a few months before I discovered the lump, so they didn't repeat that, but the would have done one if I hadn't had one so recently.
I discovered the lump the last week in February, but waited about two weeks to see if it went away, thinking it was just a swollen gland (I'd had one in the groin many, many years before, and that's all it turned out to be back then - definitely not related to this cancer, as it was over 30 years ago). Then I called my doctor and made an appointment. Got in the first week in March, and then was immediately scheduled to see the surgeon, probably about the third week in March. Saw him, he scheduled surgery for second week in April. Had all the tests done after the surgery, so that took up another several weeks. Didn't start treatment until mid or late May.
So, don't worry about a few weeks delay...or even up to a month or 6 weeks. It probably won't make a difference. You definitely will, however, need systemic treatment, as it's in nodes in two different areas. Unfortunately chemotherapy is the only way to guarantee that any stray cancer cells are killed.
If you're like me, the waiting is probably the worst part of this whole thing. At least once treatment was started, I knew that I was taking action to beat this, and that felt good, emotionally. But while you're waiting, please do try to be positive. As I said, this is a highly curable type of cancer (squamous cell), and there's no reason at this point to think you won't be cured.
Just got home from Dana Faber.....dr did a few more biopsies on cervix and wants me to have a skin tag removed from the outside out anus,,,,,may be nothing but half of it was flesh color half was red,,,from there if still no primary he will start chemo but didn't get into it....radiation maybe.....what were your side effects from chemo.......pain and tired and ? Ugh can't bear to do chemo again.....I hope my body can handle it and I know I will need a port...my veins are shot from the other chemo......im tired and worried......I pray the chemo works.......the dr seemed like he would of been happy to of found the primary. Thanks for being there .......it helps......Cindy. Also how many treatments did you have.
Last edited by Cindy927; 07-27-2012 at 01:56 PM.
Reason: Left out a question
Since that skin tag is bi-colored, they may want to remove that right away to see if it actually may be the primary site.
At any rate, chemo: Well, I had a combination of taxol and carboplatin. The taxol does not cause nausea, but it can cause muscle and joint pain and, since I already have fibromyalgia, it wasn't pleasant. I had four treatments. I was fine the day of treatment and until about 4 PM the next day, and that's when the pain would hit. I learned after the first treatment to start taking vicodin about 3 PM on the day following chemo, and I would have to take it every 3 1/2 hours for the rest of that day and the next. By day 4 I was able to cut back to one every 6 hours, and by day 5, I only needed two vicodin. By Sunday I didn't need it at all, and I'd be fine for the next two+ weeks until the next treatment. I did experience neuropathy from the taxol - my doctors were concerned that it'd be really bad for me because I'm diabetic, and it [I]was/I] really bad, but eased up somewhat after I stopped treatments. I ended up wearing heal cups in my shoes for about 6 months and by the end of that time, the neuropathy was totally gone.
The carboplatin causes both hair loss and nausea. Can't do much about the hair loss...I wore bandanas to go with my outfits and nice straw hats - looked more fashionable than I'd ever looked before that, lol. And my doctor treated me with IV Zofran before the chemo treatments and some oral meds for 3 days afterwards. I never lost my appetite at all...in fact, I gained 3 pounds during this time (then went on a cruise and lost 3 pounds that week, totally surprising my doc and making him wonder what the heck was wrong with me, lol!) But of course, the answer was that during chemo, I ate a lot of ice cream, as I had no energy to make meals and no one to do it for me, and then I walked a lot on the cruise.
I chose to have a port put in, as I didn't think my veins would thank me for 5 hours of IV treatments. I kept the port in for about two years and then finally had it removed when it looked like I definitely wasn't going to need it any more. The only downside to the port is that it has to be flushed, I think it was every 4 weeks (that's after chemo...of course it gets flushed right before each chemo treatment.)
And they did my chemo first, and then the radiation, which I think is fairly common. Radiation only gets the local cancer and, especially in CUP, since they don't know where the primary is and whether it's still spewing out cancer cells, chemo is the first line of defense as it gets the cells all over the body.
In the final analysis, this experience wasn't the most fun I've ever had, but it was well worth it and I'd do it again if I needed to without hesitation. But then, I'm an old hand at dealing with medical problems, since I've had nothing but since I was 30. Renal stenosis and high blood pressure, heart attack, GERD, diabetes, fibromyalgia, stroke, and cancer twice (the second time was bladder CA.) At this point, to me anyway, it's just another thing to get through...keep putting one foot in front of the other and eventually you'll get there!
Hi Ruth yes skin tag will be removed this week. They will prob do it in the office ughhhhhh! I also have fibro and chronic fatigue, under active thyroid and tachycardua. Right now my hips and legs are in sooooo much pain! I was getting nervous that it was the cancer but doctor said no so now I assume it's all the stress and the fibro kicked in. I'm so nervous that my body won't handle the chemo a second time. I had MOPP ...with isn't used anymore and ABV.....after MOPP I threw up for eight hrs ...and after ABV just felt so sick to stomach....loss hair....so weak.....took lots of pred. Gained weight also....bones are a mess...so the pain from chemo is manageable with meds? And the meds really helped the sick stomach? You didn't throw up?? Each treatment was five hours? Did it know down our blood counts? The appt yesterday knocked me for a loop......I can't even eat or get up...the stress took over....I know I have to believe I'm going to be ok but it's hard...also now I'm thinking anal cancer??? Oh boy!! My oncologist my gyn and the surgeon all said skin tag was fine now this dr said biopsy it....I could of had it done weeks ago....I know it's dumb but I'm so anxious to lose all my hair again....once was enough....I was so strong the first time and now I'm so weak.....I have a twenty yr old I am trying to be strong for....he's my only one.....he's taking it hard....anything I can do to get myself to eat now...like ensure or something? Trying to eat just can't. was it bad getting the port in? We're you awake? When they use it do hey poke thru the skin each time? I didn't have a port the first time...veins are shot....I have fears about the chemo and I have fears it's not going to work...the dr in Boston aw great but never said he worked with other like myself...I assume he did...but I need to ask....mine seems worse than yours...I had two nodes in groin..which were taken out and two in iliac area which is on the left of belly button....well I rambled on enough...your words are so helpful....looking forward to your reply....i cant believe all you have been through! You are an inspriation! Thanks Cindy
I'm not sure what those chemo letters stand for - the ones you had before - but it is absolutely imperative that they treat you with IV anti-emetics BEFORE they give the chemo. If they don't, the nausea will start right away and you can't stop it. But with the IV treatment before hand, you don't get nauseous, and you're then able to take the pills for the next few days. When you're ready to start chemo, INSIST that they give you IV zofran, kitryl or anzamet. Plus anti-nausea pills to take for the next several days. I've know people who've gone to Dana Farber and they waited to treat nausea IF they got nauseous - by then it's too late. My doc is very aggressive about preventing side effects.
As for how long the treatment will be...that 5 hours for me included the IV anti-emetic time, plus another IV treatment to combat possible allergic reactions to taxol. It all varies a bit depending on what they're going to treat you with.
As for the port, they give you some anesthesia when they put it in...but it's a very light anesthetic, as it only takes a short time to insert it. When they finally took it out, I just had a local. It hurts a bit when they stick the IV into it, but not really all that much...but since I'm diabetic and needles hold no fear for me, it didn't seem like a big deal. And it was much more comfortable than a regular IV, I think...they can never get regular IV's into my veins without a struggle. Getting into the port was a piece of cake compared to some of the IV's I've had.
Oh, I don't think yours is any worse than mine...they took out a ton of nodes, from what I understand, and I was sore all the way up to my underarm, so I know they dug around quite a bit. Honestly, Cindy...as bad as all this is, and I'm not making light of it, squamous cell is so highly curable that I actually consider it lucky that that's what you've got. Sure, it's a lot to get through, but focus on the end results, which should definitely be a complete cure. I finished all treatment in October of 2001, and I've had no recurrences! And I've spoken to at least 4 other people who had exactly the same thing and have survived cancer-free for many years. Do try to stay positive and if you find your mind is really making you nuts and you can't eat, consider asking your doctor for some mild tranquilizers to get you through. You need to keep up your strength, especially now, going into this. Also, try fruit smoothies with yogurt...very nutritious and easy to get down, as well as Ensure.
Ruth. When I had chemo all they used was compazine.it did nothing. But MOPP was taking off the market now.... Ok so you got an hr of IV zofran first...I will talk to the dr about it cause what I thought I hear was in my doctors office they put the zofran in the chemo bag....but I don't wanna get sick! So I have to talk to them....my chemo will be in Cranston RI at my oncologist. Omg I didn't realize they took out that many nodes! The two in the ilic area are to deep to take out so after chemo I assume radiation... You did have radiation? How was that if you had it? I started lexapro last week...hope it works.....second time is scarey....especially since I know how harsh that mopp was.....again thanks for being my inspiration...cindy
When they say they put the Zofran in the chemo bag, they may mean that they give it right before the chemo...I think all those medications come in separate bags, so they hang the Zofran first, then the chemo (or the antihystamine and then the chemo, if an antihystamine is necessary).
And yes, I did have radiation. Mine was targeted to a very small area, where the main tumor was in the groin...they couldn't get all of that tumor because it had already adhered to the main femoral artery, so they wanted to zap what was left with radiation. It was easy, and caused no problems, not even a radiation burn. Did cause permanent hair loss in that area, but it's a small area and no one sees it, lol.
Hopefully the lexapro will work. It takes 2-4 weeks for any antidepressant to really kick in. Don't know if they'd give you a script for lorazepam along with it, but lorazepam is a very mild anti-anxiety med that acts immediately...it's mildly narcotic, so you don't want to take it on a regular basis, but for those awful nights you can't sleep for worrying, or your stomach is just twisted in knots, the lorazepam can really help. I take an antidepressant for sleep issues because of the fibro, but every once in a while I still get wicked insomnia, so I'll take a lorazepam (once!) to get my sleep back on track. Good to have on hand just in case.
I really think you shouldn't have much trouble with nausea this time...those anti-emetics are really quite effective.
I will make sure I get the zofran first. I refuse to get sick. I had enough of that last time. Did you get chemo in the hospial or doctors office? Yes I have lorazepam . I take the lexapro in the am an I have been taking the lorazepam at night to sleep. I am using it every nite but if I don't I do not sleep at all. Plus I've been in menopause foever so hot flashes don't help. Do you take the antidepressant at night? Also my nerves are killing my stomach! I'm taking Zantac .... Not to worried about radiation it's just a pain....last time was everyday for 33 treatments....but way better than chemo!! Did your blood counts drop very much?? Sorry for all the questions ..... Your are a God sent! Cindy. You said it was in one node but you had many removed??
Last edited by Cindy927; 07-29-2012 at 06:40 PM.
Don't worry about asking too many questions...when your mind is all stressed out, it's very hard to organize your thoughts and ask all questions at once. I know because I've been there, done that! You might want to take a tape recorder with you to doctors appointments so you can remember all the info. My doc was fine with it, as are most docs when you explain why you want to record.
I got chemo in the doctor's office. He had a clinic attached to his office - a room with about 8 reclining chairs for patients getting chemo. It was so nice to not have to check in with all the hospital bureaucracy each time. My blood counts never dropped so far that they had to put off chemo. The one big problem I had is that being diabetic and having to take major steroids the night before chemo, my blood sugars were incredibly high for two days. That probably also affected how debilitated I was...high energy from the decadron plus high blood sugars for two days followed by a drop in energy when the decadron wore off plus blood sugars still not back to normal...luckily I don't produce ketones, or I would have had to be hospitalized for chemo. As far as the nodes, I'm not quite sure how many were removed, but I know it was more than just one or two.
I think you're probably okay taking a lorazepam even every night to sleep...just don't start taking it several times a day every single day...that could be problematic down the road. And taking Zantac is a good idea for now...and if that doesn't work, ask for omeprazole (the generic version of Prilosec).
This might seem like the worst time in the world to try this, but have you thought about meditation to relax you? If you don't meditate on a regular basis, the easiest way to get into it is to find a guided meditation CD...a type called Yoga Nidra is excellent...someone is talking to you the entire time, guiding you through relaxation and visualization. It's sometimes called "yogic sleep"...you're not really asleep, but in that relaxed state just before you fall asleep. It's truly a wonderful practice...leaves you feeling both relaxed and energized at the same time. And there's usually a time during it when you can concentrate on breathing in white light and having it heal your body...very satisfying! I did yogic breathing and visualization during both my chemo and radiation treatments. And I was probably the most relaxed patient in the clinic, thanks to that!
Stay strong, Cindy, and try to stay calm. This is just one of those speed bumps in life - you went over one years ago and survived, and you will survive this one, too!
Hi Ruth had the biopsy on anal area today...removed skin tag...wasn't bad at all.. Just alittle sting with he stuck the needle in..port will go in next week. Alittle sore now....really tired...just all the testing and waiting and wondering each day what the cancer is doing now???? Hope its not spreading?? I pray ever day the chemo works.....my really scarey thing is I read that most people who develop a second cancer after hodgkins will die from it? Oh how I wish I didn't read that..I was doing so good then that! Keep talking with me .... You had me feeling better......thanks cindy
Last edited by Cindy927; 07-31-2012 at 08:10 PM.
The answer is to stop reading those nasty stories, lol. Where did you read that stuff about second cancers after Hodgins? If it wasn't a reputable site (such as NIH, Mayo Clinic, American Cancer Society, etc.) just ignore it. Plus, you had Hodgkins soooo long ago that I doubt it's even relevant now.
Have they told you yet exactly what chemo you're going to be on? It's important to know, so you can prepare to deal with any side effects. It's way better to be prepared in advance than to be surprised...trust me on that!
Make sure you're getting enough sleep, as being sleep deprived can make you start feeling worse, both emotionally and physically. Believe it or not, you'll probably start feeling better emotionally once you start treatment...it's much more empowering to feel you're actually doing something about the cancer than sitting around waiting.
Oh Ruth you are reading my mind! I want to get started ...... I am soooooo tired I can't do a thing..... I hope it's just stress.....I'm doing find after the biopsy....no pain.......I an just so tired it's hard to do a thing......now it's worrying me......I called doctor today...they hope the last cervical biopsy will be back tomorrow and tell will make final decision on chemo....and an appt for the port.....so chemo is doable ......as long as anti nausea meds are taken and the three days of pain are managable with meds......so you functioned okay on the other days?? Did you get dry mouth or sores?? With my treatment for hodgkins I could barely function.....I know it's different now......I wish I could shut off my mind .....port....chemo....results....will the chemo work....etc etc. I'm trying to rest as much as possible. Where did all my energy go?? I am eating but not like before....losing weight but stress burns off the pounds....thanks for hanging in there with me.....it's hard and I want you to know its even harder cause in may my first cousin Steven passed away from cancer ....he fought colon liver cancer for two years and I haven't even had time to grieve and this....it was awful .... We were so close ......I was depressed from that now this......we're you sick at all before you found your lymph node? I meant to ask you that......thanks Ruth. Cindy