I posted last month in the Lymphoma thread about my biopsy results from an inguinal lymph node showing Squamous cell carcinoma....I have just returned from the Cancer Treatment Center of America in Tulsa Oklahoma and found out a lot more information about this...

I know SamQKitty will be interested in my diagnosis because I think she had basically the same thing....

I went to the Cancer Treatment Center (you see the adds on tv..) because I was getting terrible information from my local doctors about my condition. I found the Cancer center website online and they had a live chat - so I contacted them and they were so wonderful! They flew me to Tulsa for a battery of test's and scans to determine just what I had and if it was localized or spread. Thank God it is localized in my inguinal lymph nodes! I would recommend ANYONE with cancer - who is less than satisfied with their current oncologist - or physician - to contact the Cancer Treatment Centers of America! They are wonderful and hopeful people and they have cancer treatment tricks up their sleeves (by way of new machine technology, drugs, etc,) that can literally turn around a hopeless prognosis.

OK - I was diagnosed with Squamous Cell carcinoma - in the left inguinal lymph nodes. I have a mass of nodes that measures almost 5cm. The CT scan showed the mass is pressing against my femoral artery but they are not sure if the artery is actually involved yet. The PET scan showed no other cancer in my body...:D Right now they are calling it a CUP - but they said they will be looking for a primary site when they go in there to remove the nodes. So far all related areas are showing clear of cancer (reproductive areas and anal tract). These would be the most likely places for a primary site of this type of cancer in these particular lymph nodes.

I am scheduled for surgery in August and after I heal - I will do radiation.
At the Cancer center - I was seen by numerous doctors (all under one big roof) - a Radiologist, surgeon, gynecological oncologist, etc... I underwent PET and CT scans and blood work. The Cancer center obtained my biopsy results from my local doctors prior to my arrival in Tulsa. They all seem to think this is treatable and curable - which is such a relief because if you do google searches for information about CUP - they have some pretty grim news out there! :eek:

I'd love for SamQkitty to give me some information about her surgery (if she had surgery) and what her experience with this stuff has been like.

Oh my gosh, DJW...your case is almost EXACTLY like mine! My tumor was slightly less than 5 cm, pressing against femoral artery, on the left side. The only difference is that my cells were poorly differentiated and had similarities to both squamous and small cell cancers.

And, DJW...this is absolutely the BEST kind of CUP to have. Yes, highly curable. In fact, I belong to another cancer board (unfortunately can't mention it here) that's specifically for CUP, and there are three other people on the board who had exactly the same thing you and I have had...two of them are now 7 and 8 year survivors, and one of them was diagnosed about 4 months after I was, and she is also still alive and well and cancer-free.

The surgery...well, it's surgery, and you'll be sore for a while, but since it doesn't involve the abdominal wall, chest wall, or any organs, it's really not that big of a deal. I didn't even need any major painkillers after the surgery...tylenol was more than sufficient. It felt like I was bruised from the groin to halfway up my side (probably from exploratory probing to make sure the cancer hadn't spread upwards), but it got better each day. It was day surgery, and I went home the same day. Do make sure you've got someone to stay with you for the first couple of days, as you don't feel much like bouncing around, but by day 3 or 4 you should be fine.

In addition to the radiation, you should also have chemo, especially with CUP, since there's no telling where it originated from. You don't want to have radiation over your entire abdomen and pelvis, so you'll need chemo to be sure any stray cells are zapped. Chemo experiences vary widely depending on the specific drugs used, your own individual reactions to them, and how aggressive your doctors are about preventing nausea. Let me know as soon as you've got a plan from your doctors and we can discuss this more.

So glad to hear you had such a good experience at the Cancer Treatment Center. It's always much easier to deal with a major illness when you've got confidence in your doctors.

Ruth

Ruth,

You can't imagine how relieved I am after reading your post!

I think it's incredible that we have almost the same unusual cancer. My doctors are almost to the point of accepting the possiblity that some rogue cancer cell was left over in my body from cervical carcinoma in situ 16 years ago. That cancer was lasered - with wide margins and was followed closely for the past 16 years with no evidence of recurrence. Just to be sure they did a deep cervical biopsy on me last month to check and it was completely clear. (They took a lot of tissue - it hurt like heck!)..

I have had some episodes over the year of boil type pimples on my bikini line and my doctor said it may be a mild case of Hidrentitis Suppurvativa (I probably butchered that name). It was when I had one of these boil outbreaks last fall that the nodes began to swell.. I read recently that people with chronic HS :D (not going to try it again) have a 50% higher risk of Squamous cell carcinoma! I wonder if there is a connection?

The type of radiation they are going to perform is a new one. It is able to concentrate only on the area of concern so it doesn't mess too much with the good cells... They have this new technology....so I get to skip the chemo. If you look on the Cancer Treatment Center of America's website you will see the new radiation treatments they have available.

I am so relieved that the surgery shouldn't keep me down for very long!:D The surgeon said he will have me up walking by the next day - (I thought that was crazy - but now - reading what you went through - it makes sense! ) I'm in good physical condition and I'm glad to know where to expect the pain.

You are an angel!:angel:

I told the oncologist in Tulsa about your post - having basically the same thing and how it's the best CUP to have and she agreed! She said she expects it to be cured...not just treatable...;)

DJW,
Maybe it's just me, but I would not be comfortable with not doing chemotherapy. I realize that chemo is no fun, and can have permanent side effects that may even show up years later (so can radiation), but given the uncertainty about where this originated from, I would want to do everything possible to make sure that whatever the origin is, it's zapped, too. Of course, if they are quite certain it's from the HS, then that's a different story, as they will be radiating the area that was affected.

I'm not that familiar with cervical cancer and don't know what types of cells are affected, but.unless the cervical cancer was also squamous cell carcinoma, then I doubt it this came from the cervix.

By the way, some of those awful statistics you may have read on the internet go back years...to the 80's and early 90's, before taxol and taxol-type chemos were in full use. The prognosis for our particular type of CUP is much better now. When I was first diagnosed and researching it, I saw one that said only about 20% of all CUP patients survive 14 months! Scared the living daylights out of me...but it turned out it was a study done in the late 80's. Anyway, the other thing I wanted to say is this...even if statistics say 20% survive x number of years...why not assume you'll be in that good 20%??? That was the attitude I decided to take and, while I'm not saying it helped "cure" my cancer...it sure as heck helped me get through all the treatment! And actually, I do believe that staying positive helps our immune systems fight just about anything.

Ruth

Hi DJW,

Sounds like you're pretty happy with your new doctors - that's great! I'm trying to talk my dad into getting a second opinion, but haven't had any luck yet. I'll have to see if I can find the website for them.

I agree with Ruth... from what I've been able to gather so far (I'm relatively new to this since June this year) that Chemo is almost a given with CUP. They started my dad on it almost a month to the day they removed the tumor in his arm (It took them a few weeks to determine they couldn't find the source).

Good luck with the surgery - keep us posted on your progress.

Lynn

P.S. Ruth... any chance you could give me a hint on how to find the CUP website you were speaking of?

Ruth,

Your information just keeps relieving my stress! :D

The cervical cancer I had was actually one step before it's considered an agressive cancer. It was still contained in the small area of the cervix and they were able to surgically remove it all with a laser. Cervical cancer is generally Squamous cell carcinoma and is often a result of the HPV virus. (Human Pappilloma virus) I may have spelled that wrong...

I don't know....For me - I was relieved to be able to avoid chemo. I'm sure my own beliefs are completely unfounded - but it seems that everyone I've met with cancer has had it return in other areas after chemo treatment. Now - there could be many factors responsible for this and the chemo did kill the cancers in their original places... None of these people had our type of cancer. Most had lung or breast or esophogus cancers.... Anyway, this is why I'm glad to not have to have it.

The radiation treatment they are proposing to use is very new. It's called Tomotherapy and it targets only the cells that area suspected of having cancer. I'm finding that only one hospital in my state (WA) has this new technology so far. There is a website (Tomotherapy .com) that explains it and shows where to find it in your state.

You are so right about the prognosis for CUP on the internet!! ACK! I cried all night after reading through these sites! It's terrible! If you look further however, you'll find information that states that our kind of CUP - inguinal nodes - only occurs in 1 to 3% of patients. And that it carries a high cure rate.....but you really have to look hard for that revised information.
I also would like a hint about how to find that CUP forum on the net!

DonohueGirls,

I thought the Cancer treatment Center of America was too good to be true and hesitated in contacting them. Now that I've been there and spoke with them, I am so relieved!
When you find their website (type Cancer center of America in a google search) look for their "live chat" button and click it. Someone will chat with you and give you all of the information you need to give to your father so he can make the best decisions for himself. They also list a toll free phone number on the site so you can call them and get info. I did. They were so understanding and I was just venting for the first part of my call! It feels good to get out the frustration! ;) They are so incredibly kind and patient and informative.

Sorry ladies, but we are not allowed to post other web sites on here. If you search the internet for CUP and ACUP (which is adenocarcinoma of unknown primary) you may be able to find it. ACUP is, I think, the older term for this, back when they thought most CUP's were adenocarcinomas.


DJW, I didn't know that cervical cancer is usually squamous cell. That would make me all the more concerned about not having chemo...because if, by chance, this spread from the cervix, it could spread elsewhere, too. Sure, it's true that cancer can return...whether you have chemo, radiation or a combination of both. But one of the main reasons that CUP is more survivable now, especially our type of CUP, is because they use taxol as one of the chemotherapies. Just something to think about.

Ruth

Ruth,

The Cancer Treatment Center of America sent me a copy of my Ultra-sound, CT and PET scans on one CD/DVD. I told them that I wanted to view the PET scan with the surgeon prior to my surgery next week. (I just wanted to see what they saw):angel: Well, the woman I spoke with at the center asked if I'd like her to send me the CD so I can view it myself at home. She assured me that I could also view it with the surgeon when I come back next week - and maybe I'd be able to better form my questions if I had time to view it prior to my visit. :D I've never heard of receiving a copy of your scans! Except for a pregancy ultrasound video.... I thought this was so cool!

Anyway - the CD came and it is amazing! It shows split screen with one side the CT scan - showing more detailed images of organs, etc..the other side is the PET scan showing the glowing areas of cancer - they syncronize both sides so you know which part of your anatomy you are looking at.

Once I got past the fear of looking at the "glowing" cancer nodes - I actually felt better - knowing exactly what I'm dealing with inside of my body. One thing I learned - your kidneys and bladder will glow too - even if there's no cancer!:eek: This is good to know before you look at a PET scan! It's because they are organs that have a high metabolic uptake of glucose and will usually always glow on the scan. I wonder if they ever can use a PET scan to detect cancer in the bladder or kidneys if they always glow anyway?

So - I saw the nodes. They are pretty big. (I could see the right inguinal nodes which are not involved or cancerous for comparison.) There are several of them glowing in the left inguinal area and look confined to the upper superficial nodes - however, there does appear to be one node that seems lower than the rest. This could be the one the surgeon mentioned as a possible deep inguinal node... Or it could just be an upper node misplaced by all of the swelling and inflamation. He will know when he goes in...

I thought I'd share this with you. I found it fascinating! And it really helped to give me a sense of control over this cancer. I know what it looks like and it's not as scary anymore.

Wow, impressive stuff! I've never seen my PET scan, or even most of my CT scans. Luckily, I've got some really great doctors whom I trust totally, and who tell me everything, but it would be really neat to see it all laid out like that.

Ruth

Well..I'm back from Tulsa!

Surgery took almost 7 hours and the cancer was extensive but they took their time and got it all!:D

Once they got inside of my thigh - they saw that the mass had completely taken over my lymph nodes - several groups of nodes in addition to my inguinals. It had also completely invaded a vein and was starting on my Femoral artery. It had wrapped itself around my artery and attached itself to one part. They were able to remove it by delicately cutting out a small portion of the artery and suturing it up. They also found a blood clot at the femoral junction where the invaded vein met the artery...Yikes!:eek:

I have stitches from my hip bone to under my thigh...had some staples too. But most are out now. I have one J-P drain still in my leg and a bit of lymphadema but they expect it to go down. They never found a primary - though they checked everywhere.

All in all it was a remarkable surgery and the people at the Cancer Treatment Centers of America were absolutely wonderful! :D

I have a great prognosis now. I follow up with radiation on a preventative basis just in case there were any microscopic cells remaining. The surgeon is confident that he got it all. He certainly took his time!

Wow, DJW, your surgery was way more extensive than mine, but I'm glad they got it all. How's your recovery coming along? You must be sore as all heck, but I hope it's getting better daily.

Are you going to have the full course of radiation? That is, approximately 5 weeks, 5 days a week? I did that too, and it was the easiest part of the whole thing. Of course, my cancer hadn't spread quite as much as yours, so less area to radiate, but still...shouldn't be too bad as long as they can avoid the bowel and bladder, which they probably can do.

Good to see you back. Will keep the prayers going for your complete recovery/cure.

Ruth

Wow, DJW, your surgery was way more extensive than mine, but I'm glad they got it all. How's your recovery coming along? You must be sore as all heck, but I hope it's getting better daily.

Are you going to have the full course of radiation? That is, approximately 5 weeks, 5 days a week? I did that too, and it was the easiest part of the whole thing. Of course, my cancer hadn't spread quite as much as yours, so less area to radiate, but still...shouldn't be too bad as long as they can avoid the bowel and bladder, which they probably can do.

Good to see you back. Will keep the prayers going for your complete recovery/cure.

Ruth

Thanks Sam Q Kitty!

I was shocked at how exentsive this mass was once they got in there! I never felt anything other than the abcessed and swollen nodes on the surface! Cancer is so incredibly sneaky...

The pain I have now is mainly from the J-P drain in my leg. My thigh muscles feel like they want to contract around it and it's a weird feeling. The remaining stitches are holding in the crucial tension area of the incision. The surgeon really tried to keep from having to use a graft for the wound. Feeling is returning to most of my leg - especially when the swelling and fluid go down. I have some ways to go yet though...

Overall - I feel great! :D Just knowing that that beast is gone from my body!
Thank you so much for your information prior to my surgery! It made everything much less scary! I felt I knew what to expect and it relaxed me!

From another of the "rare" Squamous Cell arcinoma - inguinal nodes with no primary!:angel:

Glad to hear you're doing so well, DJW...keep us posted on your progress. I'll think good thoughts for you and send up some prayers for this to be a COMPLETE cure!

Ruth

SamQkitty and DJW,

I just read your posts with interest--found them when doing a search of squamous cell carcinoma of inquinal lymph node. My daughter, who is 24, had a swollen lymph node removed and much to everyone's surprise it was squamous cell carcinoma. No primary site can be found though she had had precancerous leisons that had been removed with laser surgery. The doctor has recommended removal of lymph nodes and radiation. i have read about the side effects of these treatments and so am looking for personal stories. If you don't mind, I'd like to ask a few quesitons:
1) you both mentioned having lymph nodes removed. Were all of them removed in groin? Were they removed after a PET showed involvement or more as a precaution?

2)Have you had ongoing problems with lymphedema and if so, how extensive?

3) was radiation only done of your groin, or entire pelvic region?

4) What were the side effects of radiation?

thank you so much for your help!

pmb8

You know, I don't actually know if ALL the lymph nodes in my groin were removed...hmm, guess I should have asked my doctor! At any rate, a large mass was removed. I had chemotherapy, as well as radiation treatment.

2. No problems at all with lymphedema.

3 & 4. Groin only. They can target the area pretty specifically now, and they wouldn't do the entire pelvic area unless there was evidence of cancer in the entire pelvic area. They try to make sure that they don't radiate the bowel and bladder, as that can cause problems. I had no problems during the radiation treatments...not even tiredness, which is much less likely to occur with radiation to the lower part of the body. The only long-term effect I had is that the left side of my groin and pubic area feels somewhat bruised all the time. It's really not all that bad, and most of the time I no longer notice it at all.

You mentioned that your daughter had had pre-cancerous lesion removed prior to this. Were they near the groin area? If not, I'd also suggest chemotherapy, as it would be impossible to tell where this originated. The chemotherapy was definitely worse than the radiation treatments, but, hey...it's been five years this October since I finished all treatment, and I'm still cancer-free, so in my opinion it was well worth it.

Ruth

Update!
(Yeah..I'm still alive..;) :D )

To recap...Last year in August I went through major surgery to remove all of the lymph nodes in my left leg/groin area. I had been diagnosed with Squamous Cell Carcinoma of Unknown Primary..(They looked everywhere for the point of origin of my cancer but still haven't been able to locate it and the cells from my tumors and biopsies haven't given a clue either..)

I recovered from the surgery - but I do have lymphedema in the left leg. I wear a chaps style leg garment that keeps the swelling down and a night garment that massages the fluid out while I sleep. The night garment also prevents fibrous growth in the leg that cause the leg to remain large forever if it's allowed to grow.

In December of 2006 - A follow up CT and PET scan showed cancer in a lymph node in my right groin area. I had surgery in January t remove just 7 nodes around the glowing one...Only one node was cancerous. This is just baffling because this cancer is not supposed to be able to jump to the right groin area without a central primary site. There is no primary site to be found.:confused: So how did my cancer spread?

In February of this year - after returning from the Cancer treatment Center from my surgery..I came down with an awful respiratory infection that plagued my kids and hubby. It was terrible! Everyone had bronchitis but mine turned into pneumonia. Some antibiotics and albuterol cleared me up in a couple of weeks though. In April, I went back for my check up and they found that my cancer had returned in my left groin area - right above my surgery incision site...:( ..And the doctor said there were spots in my lungs.
She felt the spots were consistant with metastatic carcinoma - I reminded her that I had recently had pneumonia and thought it could be from that. There were only a few tiny spots. I came back in June for a follow up CT scan and the spots were still there though some were gone and others got very slightly larger..(from 5mm to 8 mm) :rolleyes: Also - the mass in my left groin area did not grow from April to June. (I'll take this as a very good thing...:angel: )

I started on Tarceva to see if it helps the left groin area (the cancer is resting on some major veins and surgery and radiation is an option if we can shrink it a bit..). The Tarceva should help the mets in my lungs too.

I feel great! I wouldn't even know that I had cancer if I wasn't scanned!:D

So much has happened over the past year - but all in all - I feel normal. I don't dwell too much on my cancer. It's more of an annoyance than anything.

I wont do conventional chemo. This is my personal decision based on a year of observation of dozens of cancer patients who went through chemo only to have their cancer return and kill them in their chemo-weakened state. Chemo is highly effective in some cancers. Lymphoma and leukemia are two of those cancers. My Uncle has been cancer free for over a year after chemo for his lymphoma. He is in his 80's! :D

Over the past year I have learned so much about cancer! I have learned so much about treatments - both conventional and alternative. I've read that there may be some great breakthroughs coming soon in the form of some plant used for malaria. I hope so for myself and for all of the millions of people who are currently suffering from this beast.

"I wont do conventional chemo. This is my personal decision based on a year of observation of dozens of cancer patients who went through chemo only to have their cancer return and kill them in their chemo-weakened state. Chemo is highly effective in some cancers. Lymphoma and leukemia are two of those cancers. My Uncle has been cancer free for over a year after chemo for his lymphoma. He is in his 80's! :D "

Hi D,
I am so sorry to hear that you've not only had a recurrence, but that the cancer has apparently spread.

Back when we were initially discussing this, I was concerned that you were not going to have chemotherapy. I'm wondering if you would reconsider? Squamous cell cancer is highly responsive to taxol and carboplatin. If you recall, when I had surgery, they weren't able to remove it all because it had adhered to arteries and veins and to remove it all the would have had to amputate my hip/leg. I was treated with taxol/carboplatin in addition to radiation, and it is going to be 6 years this October since I finished treatment, it's already 6 1/2 years since the cancer was first discovered...I have not had a single recurrence.

Perhaps I'm just lucky...but I really believe that it was the chemo that helped create such a great outcome. Think of it this way: If they can't find the primary, but they know it's metastatic, then somewhere in our bodies there are a few cancerous cells that were, apparently, seeding off to another area. Since extremely small tumors (less than 2 cm) usually cannot be detected by scans, and individual cells certainly can't be detected, there is no way to be certain they got it all through surgery and radiation (since radiation is very specifically targeted to the known area of cancer, and not to contiguous areas). Chemotherapy is systemic, so those few small cells that are causing all the problems can be zapped, instead of being left alone to continue seeding cancer.

I know the thought of chemotherapy is very frightening...and there certainly are side effects, but all in all, for this type of cancer, I think it's highly worth it.

Whatever you decide to do, please know that I'm thinking of you and praying for you. Please do keep us posted.

Ruth

Hi Ruth!

I was hoping you would see my update. :)

I expected your response to my decision to nix chemo...;) Perhaps I should have had chemo as a follow up to the surgery - but at the time Tomotherapy was suggested because the surgery was very successful and the surgeon was quite confident that he was able to remove the cancer in it's entirety - with the exception of microscopic cells. My tumor markers have been at normal levels throughout my cancer ordeal. The initial PET and CT scans showed only localized tumor activity. A follow up PET scan in December of last year - 4 months after surgery - showed a glowing lymph node in my right groin area and some glowing in my left surgery area. It was decided at that time to surgically remove the right affected nodes (7 of them) and hold off on the Radiation Tomotherapy. Because of mixed attentuation in the glowing left groin may have been indicative of healing rather than cancer recurrence... In April I rescanned in the left leg and it was definitely glowing. A biopsy in June determined that there were some malignant cells in the left groin area above the incision scar where fluid had collected. Cancer loves fluid! :rolleyes:

I'm giving the Tarceva a try for now - but I feel great and I'm very active and my pain level is nil.. I'm keeping myself healthy and well nourished. I've had no weight loss...

I'll let you know how this goes! :D

D

Hi D,
Well sweetie, know that I will be praying for you. You've got a terrific attitude and I truly believe that it helps...a good attitude helps strengthen the immune system, and a strong immune system can help your body fight the cancerous cells.

What exactly is Tarceva? Is it an oral type of chemo (chemo is any medication used to treat cancer, whether taken orally or injected)? You know, they are coming up with new stuff so quickly now, one can hardly keep up with it all!

At any rate, do stay in touch. I will keep praying for you, and I'll look for your updates.

Ruth

[LIST=1]
Tarceva is a chemo ( in pill form) without the harsh side effects of the standard IV (port) chemo drugs. Tarceva works to break down a protein on the cancer cell to make it more vulnerable to destruction. It works best on those with a certain receptor gene.

See www.tarceva.com

Tarceva can cause a rash on the face and neck - upper extremeties. It is said that the worse the rash is - the more the tarceva is working. But I've heard otherwise as well..

I have a mild rash on my face, neck and arms. So far I haven't experience any diarrhea - which is also a common side effect.

Tarceva is generally prescribed for Non small cell carcinoma of the lungs - and generally given after prior chemotherapies fail.....but it can also be used in my type of squamous cell carcinoma (unknown primary) - without prior chemotherapy.

We'll see how it goes. I'm glad it doesn't make me feel bad - especailly when I've been feeling so normal and healthy.;)

Okay, D...sounds like you're in good hands! I do hope the tarceva works well for you, and that yo'll be posting back one of these days that your "x" number of months post-cancer! And then, "x" number of YEARS post cancer!

I'm keeping you on my prayer list, D. Stay in touch!

Ruth

Hello. My father, 58, was diagnosed with Stage IV Metastatic Head and Neck CA (squamous cell carcinoma) on June 8th 2007. In the last month and a half he has undergone a radical neck dissection, insertion of a port and g-tube (for feeding) with a variety of complications attached to all.

The Doctors have determined that the primary site is the base of tongue. 3 of 7 lymph nodes biopsied were highly malignant. They're saying 5 year survival rate is approx. 20%.

He's currently undergoing radiation (5x week for 8 weeks) in his second week with chemo soon to start (Taxol and Carboplatin once a week for 5 weeks).

I'm extremely close to my Dad and am terrified. Do any of you know people with a similar dx that "beat the odds" ??

Thank you,

Jen

Jen,
The only thing I can tell you is that taxol/carboplatin is a very good chemo regimen for squamous cell carcinoma. Do be aware that there may be quite a bit of pain/malaise in the few days after the chemo infusion, and have your Dad be prepared with painkillers. This is from the taxol...the carboplatin can cause nausea, but that's usually easily preventable with an infusion of either Zofran or Kitrel right before the chemo and pills for about 3 days afterwards.

The pain from the taxol starts, usually, somewhere between 24-36 hours after the chemo infusion and lasts for about 3-4 days. The intensity varies from patient to patient. There may also be some neuropathy caused by the taxol, but it will eventually go away, although it may take quite some time after treatment is finished.

That 5-year survival rate? Well, I read the same thing when I was first diagnosed and thought..."heck, that stinks." Then one day shortly afterwards it dawned on me...someone has to be in that 20%, why not me???

And, thank God, today it is nearly 6 years since I finished all treatment. Hope for the best, visualize the best, pray a lot, and try to stay strong. Positive thinking might not be a cure in itself, but it sure helps a person get through the process and, who knows...maybe it can help cure us? Positive thinking helps the immune system stay stronger, and a strong immune system is the body's best cancer-fighter.

Good luck and God bless. Do keep us posted on your Dad's progress.

Ruth

Just checking in....:D

I had to go off the Tarceva just one day after my last post...(7/27/07). I came down with a vicious infection and spent a week in bed with fever and chills.:( I thought it was from the Tarceva but my Doc doesn't think so. She thought perhaps it was an infection from a sting or infected bug bite - with the lymphedema I'm more susceptible to sepsis type of infection...I went off of Tarceva for a month then began again at a lower dosage..(just in case);) .

Though my scans from April and June show I have an active cancer again in my left groin area - the cancer didn't appear to grow much between the scans..This was before Tarceva. I go for follow up scans in October to see if the Tarceva is working. I have a mild rash and my finger tips are very dry. I have fits of itching some times but nothing too bad. I had pneumonia last February thanks to a nasty virus my teenager brought home from school..and my Doc worried that the cancer may be trying to spread to my lungs. The April scans showed leftover pneumonia as did June's. I haven't felt any symptoms in my lungs since the pneumonia. I did notice however, after starting the tarceva, that my breaths are deeper....So my next scan should be interesting...

I feel great. No weight loss, no hair loss, pain in my leg is from over use. The lump that is the cancer seems to be stable - hasn't enlarged since April...So I'm curious to see what my check up shows.

They are beginning to use Tarceva on various types of cancer now. It was originally designed for NSCLC and Pancreatic cancer. It was only prescribed after regular chemotherapy stopped working. Now - they are trying it as a first line treatment for various types of cancer with different primary sites or unknown primary sites.. I've also seen new studies that combine Tarceva with other meds like Celebrex, Artemisinin, and other targeted types of cancer therapies. With these targeted cancer therapies - the cancer industry is now claiming that cancer can become a treatable "chronic" illness - much like diabetes and thyroid disease. I've heard many recent statements in the media - referring to cancer in the near future as a chronic disease instead of a death sentence....:) Let's pray this is achieved in our lifetimes.

Anyway - just an update.:D I'm still kicking! Still taking the kids to school and working on my house projects and living life normally.

Thank you for your prayers!;)

(PS - I noticed how many views this thread has had...Wow! Why so many?)

Just checking in....:D

I had to go off the Tarceva just one day after my last post...(7/27/07). I came down with a vicious infection and spent a week in bed with fever and chills.:( I thought it was from the Tarceva but my Doc doesn't think so. She thought perhaps it was an infection from a sting or infected bug bite - with the lymphedema I'm more susceptible to sepsis type of infection...I went off of Tarceva for a month then began again at a lower dosage..(just in case);) .

Though my scans from April and June show I have an active cancer again in my left groin area - the cancer didn't appear to grow much between the scans..This was before Tarceva. I go for follow up scans in October to see if the Tarceva is working. I have a mild rash and my finger tips are very dry. I have fits of itching some times but nothing too bad. I had pneumonia last February thanks to a nasty virus my teenager brought home from school..and my Doc worried that the cancer may be trying to spread to my lungs. The April scans showed leftover pneumonia as did June's. I haven't felt any symptoms in my lungs since the pneumonia. I did notice however, after starting the tarceva, that my breaths are deeper....So my next scan should be interesting...

I feel great. No weight loss, no hair loss, pain in my leg is from over use. The lump that is the cancer seems to be stable - hasn't enlarged since April...So I'm curious to see what my check up shows.

They are beginning to use Tarceva on various types of cancer now. It was originally designed for NSCLC and Pancreatic cancer. It was only prescribed after regular chemotherapy stopped working. Now - they are trying it as a first line treatment for various types of cancer with different primary sites or unknown primary sites.. I've also seen new studies that combine Tarceva with other meds like Celebrex, Artemisinin, and other targeted types of cancer therapies. With these targeted cancer therapies - the cancer industry is now claiming that cancer can become a treatable "chronic" illness - much like diabetes and thyroid disease. I've heard many recent statements in the media - referring to cancer in the near future as a chronic disease instead of a death sentence....:) Let's pray this is achieved in our lifetimes.

Anyway - just an update.:D I'm still kicking! Still taking the kids to school and working on my house projects and living life normally.

Thank you for your prayers!;)

(PS - I noticed how many views this thread has had...Wow! Why so many?)

Hi DJW,
Good to see you here...sounds like you've been through quite a bit, but are back on track again.

I remember when my Mom was going through her third round of chemo for 3rd stage breast cancer, her doctor said the same thing about its being a chronic, treatable illness. Of course we all hope to be "cured", but if we can get many, many more years of life, with a decent quality, that's almost as good as being cured.

I send up prayers daily for you and all who are battling any form of this illness. Stop in occasionally to keep us posted.

Ruth

Jen I too was diagnosed with Squamous cell cancer ( of the salivary gland). I had a modified neck dissectionin 1/06 followed by 6 weeks of radiation complimented with Cisplatin. I had the g-tube also. While recovering from all this in Aug. '06 they found ithe cancer had spread to my lungs. They are telling me there is no curative treatment for my cancer, only palliative management. So at this time all my onc. is doing is watching my scans and waitng fo me to have symptoms ( cough/ shortness of breath ) at that time he will begin treatment. I have been seeking alternative med. for some refuge from this awful disease. I am hoping and praying something will get me through all this. Your message is the first person I have heard of that has a cancer similar to mine.
I will keep your dad in my prayers.
I know full well what your dad is going through. My heart goes out to him (and your family)
Keep the faith

Just wanted to share a little with you guys. My mother in law, 78, was diagnosed with lung cancer in March 07 and had surgery to remove the left upper lobe. She did great. Surgery recovery was a breeze. then her oncologist found lesions on her liver. We went in to see him after the biopsy and he pretty much said, get your affairs in order. We called the MD anderson Cancer Center in Houston, got her down there and we find out that she has two types of cancer, squamous cell and adenocarcinoma. her oncologist here didn't even know that!!!!!!!!!! She also had lesions on the brain....her oncologist here didnt know that either!!!!!!!!!! Houston has been so good to her and us!! She had radio-surgery to the brain last month and she just started xeloda chemo by pill a week ago. the only side effect from the chemo is she has gotten very weak and tired. No vomiting or upset stomach at all. No weight loss and is eating well. she goes back to Houston next weekend to get some scans and blood work done. Her Medicare pays for everything!!! Shocking!!! they even sent her home with a motorized wheel chair!!!!!!!!! At their expense. I can't say enough about MD Anderson......keep the faith and don't always take your doctor's word with out a second opinion..............MD is so much more advanced than you can imagine!!!! Good luck to you all!!!!!!!!!!!!

Just checking in again...:)

I had ct scans performed after one month on the Tarceva/Celebrex combination..(see above posts for explanation about those meds..)

My tumor has not grown at all in that month! :D I'll be darned!
This combination of meds appears to have halted the tumors growth for now. I go back for a follow up scan in January to check again...Hopefully I will see shrinkage in the tumor at that time... If not - we have other options to try...

Can you believe it?:D I am so relieved to have a couple of months off of worrying about cancer - so I can enjoy the holidays!

please dissregard

Ruth, and all,

Just checking in!

I'm still feeling fine and just rushing around getting things ready for the holidays. (And so grateful to have these times with my family! ).

The tumor doesn't appear to have grown at all since my last post and I've actually had days with no leg pain - which could just mean the lymphedema is resolving finally..:) I'm still on the Tarceva/Celebrex combo and have upped my dosage of Celebrex to 600 mg per day.

Hoping you and yours a very Merry Christmas and healthy New Year!

:D

So good to hear from you, DJW. Glad you're doing well, and wishing you and your family a joyous holiday season and a HEALTHY New Year!

Ruth

Just checking in again!

I went for my latest check up in mid January. The scans showed some incredible results! There was still no growth in tumor and the mets areas in my lungs were dying! I was stunned! :D

I honestly thought I was going to have bad news at this check up because my leg has been giving me so much pain. I had an infection in the lymphedema and it was taking forever to get it under control. I (of course) assumed that the pain was from cancer growth...:rolleyes: )

I am now stable! :D And I don't go back until the end of March. If I remain stable at that time my check ups go to every 3 months instead of 2.

I am still on Tarceva, Celebrex and Doxycycline. (see previous posts.)

I hope all are well!

Happy New Year! :D

Wow...GREAT news! Hopefully things will get even better as the year progresses.

I know what you mean, though, re assuming the pain was from the cancer. I have some odd sensations where they did the surgery and radiation, and periodically it kind of flares up. Every time it happens I think, "oh, no...the cancer's growing again"...until I remind myself that it's been doing this for 7 years already and there have been no signs of cancer on any of my tests. I'm not sure one ever gets completely over that, but as time goes on it does get easier to be a bit more relaxed about it. I'm sorry you had to go through that pain (both emotional and physical), but I'm so glad it turned out to be a lymphedema infection and not cancer! Hope the infection is now gone for good.

Ruth

Every time it happens I think, "oh, no...the cancer's growing again"...until I remind myself that it's been doing this for 7 years already and there have been no signs of cancer on any of my tests.

Ruth,

I also wonder if that fear ever leaves us after our cancer is gone? I remember once I turned 40 thinking that every ailment was going to lead to some dreaded disease....Though they would only be cold's and flu's. It's bad enough to worry about our health as we age...but to go through a fright every time we have a pain after cancer is a double whammy.

My tumor is right above my surgery incision site and where my leg swells when lymphedema hits. When the leg swells, the tumor can feel as though it grew several centimeters over night. :eek: I have to remind myself that the cancer I have cannot possibly grow at that rate! :rolleyes: Then - as they day progresses, the fluid leaves and I feel the tumor shrink back to it's pre-lymphedema size....;)

The cancer battle can truly be in a large part a "mental" battle - even when it's in remission! That's why it pays to be informed about as much as you can find on your type of cancer, the side efects, etc.. The more you know - the more you can quickly rationalize. It also pays to find an oncologist who never let's you give up hope for recovery! Too many doctors today are too eager to hand out a death sentence prognosis. Dashing all hope at the beginning of the cancer battle! :rolleyes: I don't understand why they feel it's necessary to dash a patients hopes. Maybe they think it's better that the patient get their affairs in order? Still, it makes no sense. Find a doctor who never says die! ;)

My MIL was diagnosed here in arkansas and we took her to the Houston Cancer Center............you are right..............they are wonderful.............and really are experts............and the technology we have here is nothing compared to there...........her doctor here didn't even know she had 2 types of cancer............I can't say enough about MD Anderson in Houston........it's worth the expense to go there...........sadly, my MIL passed away in December..............

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