Medical Forum / Diseases and Disorders / Cancer / April 2004
Another reluctant newcomer
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Carmen - 21 Apr 2004 18:02 GMT Hello all, I've been lurking for a while, trying to find an appropriate newsgroup to talk about my husband's cancer. This group is the best of what I found so here goes: Background - Husband age 40, lump removed from the thenar eminence of the left hand (fleshy part of the palm for the non biology geeks) on January 9th. The lump was preliminarily diagnosed as a synovial sarcoma at the pathology lab at Blanchfield Army hospital. The Armed Forces Institute of Pathology confirmed the diagnosis. We asked for a molecular study of the tumor (genetic testing) by AFIP. Before that request could even be processed we found that the tissue samples had been sent to the Mayo Clinic by Blanchfield for just that test. :-) The result confirmed that the specific mutation that is the signature mutation for a synovial sarcoma was found. That eliminated even our last unreasonable doubt.
Based on the diagnosis, and the size and location of the tumor (5.5 cm in the largest dimension, primary tumor extended into the carpal tunnel), the surgeon's consultations with a number of institutions and oncologists elicited a unanimous recommendation of amputation of the hand. We gulped, but made the most sensible decision. The amputation was performed on March 9th.
Lung CT and bone scan showed no sign of metastatic disease. (Synovials like to make a beeline for the lungs)
Chemotherapy is to begin any day now. The local oncologist (Tennessee) is consulting with MD Anderson and Sloan-Kettering before he begins treatment. Due to the uncommon nature of the cancer he's only seen a few personally and wants to ensure that the treatment regimen recommended by the oncologist in Ohio is the one based on the most up-to-date data.
The agents being vetted as the most probable are: Ifosfamide (with a side order of Mesna) Doxorubicin Dacarbazine
It could be all three, the first two, or some other combination should the consultations turn up other possibilities that have shown promise.
This will be on top of the medications he's currently taking for pain related to the amputation surgery. Howard has always been a disgustingly healthy man. He's an active duty soldier (20 plus years in) and used to a high level of health, energy and strength. The surgeries (January and March) have put a little dent into his reserves, but I suspect we've only seen the tip of the iceberg and would like some sense of what we might expect during chemo. He's recommended for 4 21-day cycles of the drugs. Tips on how to make all this a little easier would be greatly appreciated. Especially the needle part. As odd as this may sound the very same man who kept his cool in Iraq when under fire has a problem with needles and blood. Such are phobias - inexplicable. He's being seen by a doctor for the phobia but frankly there just isn't time to wait for talk therapy. The stress of the cancer journey has come disproportionately from the blood draws and IVs involved.
Thank you and take care, Carmen
Alayne - 21 Apr 2004 18:19 GMT > Hello all, > I've been lurking for a while, trying to find an appropriate newsgroup [quoted text clipped - 56 lines] > Thank you and take care, > Carmen Sorry to hear of your recent troubles Carmen and I wish you and Howard all the best in your battle.
My husband also had a phobia of needles (despite being a tough biker) and the nurses used to make fun of him (in the nicest way). Distraction is the only solution that I can think of right now, at least if he isn't looking at the needle he won't know it's coming.
Hugs Carmen
Alayne
Carmen - 22 Apr 2004 03:02 GMT Hello,
> Sorry to hear of your recent troubles Carmen and I wish you and > Howard all the best in your battle. [quoted text clipped - 5 lines] > isn't > looking at the needle he won't know it's coming. Unfortunately for Howard the problems start well in advance of the event itself. The loss of appetite, sweating and other signs of stress begin several hours before the blood letting begins. Poor guy. The venet itself is almost anticlimatic. :-)
Thank you for the welcome. Take care, Carmen
spam2death - 22 Apr 2004 02:29 GMT ck out http://listserv.acor.org/archives/sarcoma.html
"May we never confuse honest dissent with disloyal subversion" Dwight D. Eisenhower
> Hello all, > I've been lurking for a while, trying to find an appropriate newsgroup [quoted text clipped - 56 lines] > Thank you and take care, > Carmen Carmen - 22 Apr 2004 02:59 GMT Hello,
> ck out http://listserv.acor.org/archives/sarcoma.html Thank you. I subscribed again (I found it the other day) and although this time I did get a confirmation message ( last time I never got one despite 4 tries) it still will not allow me to view the archives. Is there some special trick other than using the proper name, email address and password I registered with? This is the message I get: Not authorized Sorry, you are not authorized to browse the archives of the SARCOMA list from the address you entered in the login screen. The address was my BellSouth email address.
Take care, Carmen
J - 22 Apr 2004 10:18 GMT > Hello, > [quoted text clipped - 13 lines] > Take care, > Carmen Have you tried the FAQ's? http://www.acor.org/faqs/lists/ As a last resort and the last option on the page " I'm still stuck! I need help from the listowners" form. J
Carmen - 22 Apr 2004 14:28 GMT Hi,
> > > ck out http://listserv.acor.org/archives/sarcoma.html > > [quoted text clipped - 15 lines] > As a last resort and the last option on the page > " I'm still stuck! I need help from the listowners" form. This morning I registered and subbed from my Hotmail address and got the same fault. Pooh. I've sent a flag up for assistance and hopefully the listowners can help.
Thanks and take care, Carmen
Mike Radcliffe - 22 Apr 2004 07:51 GMT > Hello all, > I've been lurking for a while, trying to find an appropriate newsgroup [quoted text clipped - 56 lines] > Thank you and take care, > Carmen Carmen, Phobias have no sense of logic. My wife is a theatre nurse and can't stand the sight of fake blood in movies. I am a palliative care nurse and nearly fainted watching my daughter have stiches to a cut finger. It may be that in your husband's case he fears the loss of control of his situation, who knows, I'm no psyche nurse. Chemo is not the demon it was 10 years ago. Symptoms are generally very well controlled but the anticipation of all the things that may be going through his mind can still cause overwhelming anxiety. Certainly counselling will help but in the short term anti-anxiety and sedative drugs like lorazepam can be a godsend in getting him through. His doctors should be more than familiar with these problems. MIKE
Carmen - 22 Apr 2004 14:25 GMT Hi, On 22-Apr-2004, "Mike Radcliffe" <mikeradcliffenospam@bigpond.com> wrote:
> He's > > recommended for 4 21-day cycles of the drugs. Tips on how to make [quoted text clipped - 21 lines] > his > situation, who knows, I'm no psyche nurse. <smile> I'm a pre-med student (senior year), have no problem watching operations on television whilst eating a nice rare burger. The first time I saw my husband after his amputation surgery I got light headed and had to sit down for a bit though. Same thing happened the next day when the pump for his axillary catheter with the local anesthetic malfunctioned and his pain level rose precipitously. With loved ones it's apparently perceived differently for some regardless of background.
> Chemo is not the demon it was 10 years ago. Symptoms are generally > very well controlled but the anticipation of all the things that [quoted text clipped - 5 lines] > lorazepam can be a godsend in getting him through. His doctors > should be more than familiar with these problems. The oncologist here was informed of his problems. He did get a little chuckle out of the big bad soldier who can handle being shot at with relative ease but has problems with needles. :-) He hasn't seen how bad it is yet, so he may have a whole different take on things if Howard does the whole "sweat profusely, turn pale, start to shake and then pass out cold" routine in front of him. We'll see. I'm used to it by now, so if he goes out I hold him so he doesn't fall and hurt himself and wave off the ammonia capsules (he's gotten burnt nostrils before). When he was having a dressing change after the first surgery to remove the tumor he passed out leaning over the table (sitting) and the OT wanted to stop cleaning the wound and revive him. I assured her he'd wake up on his own and asked her to just continue on with the dressing change. I held him up to ensure he didn't fall out of the chair and that's what she did. The good thing about the chemo clinic is the nice reclining lounger he'll be in. Almost impossible to fall out of. As long as his arm is strapped onto the chair arm there'll be little danger of the IV being torn out either. He'll have time to come to without the horrid ammonia capsules. We're hoping he reacts to chemo the way he does most medical procedures. He heals very quickly according to the surgeons, is going in with a kick-butt immune system (doesn't even get colds) and keeps himself in good physical condition. (Right now he only runs 3 miles a morning but it's still exercise.) I'm a bit worried he'll lose weight (can't afford to - he's 6'5" tall and weighs 181 lbs) though.
Thanks and take care, Carmen
J - 22 Apr 2004 10:16 GMT > Hello all, > I've been lurking for a while, trying to find an appropriate newsgroup [quoted text clipped - 56 lines] > Thank you and take care, > Carmen Hi Carmen and welcome to alt.support.cancer I wonder why the chemo? Here's what I'm using to back up my question
http://www.emedicine.com/orthoped/topic564.htm and Steph's previous comment (showing the context) http://tinyurl.com/3brfy J
Carmen - 22 Apr 2004 12:21 GMT Hi,
> Hi Carmen and welcome to alt.support.cancer > I wonder why the chemo? [quoted text clipped - 4 lines] > http://tinyurl.com/3brfy > J It stems from several factors. First, there was no evidence found of metastatic disease anywhere. Having only found the primary tumor, and removed it with a wide surgical margin the reasoning is that adjuvant therapy will act on any micromets that haven't been discovered and (at least theoretically) give him the best chance of survival. At his age (40) and excellent overall health (active duty Army - exercise and maintenance of a healthy weight is mandatory) the risks of chemo are worth it. Second, synovials are chemosensitive. Third, due to the small number of synovials (and thus paltry data available involving different treatment regimens) the medical community cannot say with any certainty that adjuvant chemo (after surgery which is not at issue) is any more or less effective than none. Therefore the standard of care is "give 'em chemo and cross your fingers".
Thanks and take care, Carmen
J - 22 Apr 2004 14:39 GMT > <snip> > [quoted text clipped - 12 lines] > Doxorubicin > Dacarbazine These will give you some idea of what to expect.. <http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationchemotherapyreg imes/DoxorubicinIfosfamide>
Doxorubicin and ifosfamide
Two views of Dacarbazine http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPt/Dacarbazine.htm <http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualchemotherapydrug s/Dacarbazine>
I would have to look up the "rare side effects individually probably on the mfrg's website(s) I expect the doctors will know which pain meds are appropriate with any of the above. HTH J
> It could be all three, the first two, or some other combination should > the consultations turn up other possibilities that have shown promise. [quoted text clipped - 8 lines] > recommended for 4 21-day cycles of the drugs. Tips on how to make all > this a little easier would be greatly appreciated. Carmen - 22 Apr 2004 21:36 GMT Hi,
> > Chemotherapy is to begin any day now. The local oncologist > > (Tennessee) is consulting with MD Anderson and Sloan-Kettering [quoted text clipped - 23 lines] > I expect the doctors will know which pain meds are appropriate with > any of the above. Thank you. I'd already looked up the drug monographs, and was hoping perhaps some folks in here had had some experience with them they might be able to share. Sometimes patients and their families can be a better source of practical tidbits of info on how to deal with side effects than the medical personnel who never experience them up close.
Take care, Carmen
J - 22 Apr 2004 22:22 GMT > Thank you. I'd already looked up the drug monographs, and was hoping > perhaps some folks in here had had some experience with them they > might be able to share. Sometimes patients and their families can be > a better source of practical tidbits of info on how to deal with side > effects than the medical personnel who never experience them up close. Hi Carmen, that's entirely possible but many check the subject lines and only read posts of interest. So if/when one happens, first check with the oncologist
Here's another you may want to look through and bookmark http://www.cancer.gov/cancerinfo/coping/
Then if there's an unresolved/unexplained side effect or symptom, put it in your subject line.
OR post with the name of the treatment (after it's been decided on).
There may also be replies from others later. Best, J PS Will Howard be fitted with some type of prosthesis?
Carmen - 22 Apr 2004 22:57 GMT Hi,
> > Thank you. I'd already looked up the drug monographs, and was > > hoping perhaps some folks in here had had some experience with [quoted text clipped - 17 lines] > > OR post with the name of the treatment (after it's been decided on). It's been decided on. Dr. Patel called me at home, and gave me the rough outline then I told him that he could call Howard's cell. The treatment is rougher than we'd been expecting though. MD Anderson said that they recommend the high dose Ifex and Adriamycin. That means it won't be outpatient in a nice calm clinic setting, but 5 days inpatient. The other piece of good news is that instead of 4 treatment cycles they said 6. Howard and I talked after he got done with the doc. He's unhappy, since to him this means he won't be able to carry on fairly normally as he'd hoped. One small bright spot is that means he'll be monitored constantly for side effects and they'll be able to address them immediately. Pooh.
> There may also be replies from others later. > Best, > J > PS Will Howard be fitted with some type of prosthesis? Yes, although now with everything up in the air as far as planning purposes go I'm not sure when he'll be able to start that process. As an active duty soldier Walter Reed Army hospital in DC is the premier place to go for that care. The war's given their prosthetics lab a lot of unfortunate extra experience in the past year or so, and they're working with the latest in myoelectric limbs.
I appreciate the link, J. Thanks. :-)
Take care, Carmen
J - 23 Apr 2004 00:53 GMT > It's been decided on. Dr. Patel called me at home, and gave me the > rough outline then I told him that he could call Howard's cell. > The treatment is rougher than we'd been expecting though. MD Anderson > said that they recommend the high dose Ifex and Adriamycin. With Mesna the combo is called AIM <http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Chemotherapy_38.asp?sitearea=>
> That means it won't be outpatient in a nice calm clinic setting, but 5 > days [quoted text clipped - 4 lines] > that means he'll be monitored constantly for side effects and they'll > be able to address them immediately. Pooh. The other frustration may be long after the treatment since there's nothing to monitor (ie "has it shrunk") and apparently there can be late recurrences http://www.emedicine.com/orthoped/topic564.htm Follow-up care: Follow-up involves clinical examination, MRI of the surgical site, and CT scan of the chest. No specific recommendation exists, but the author rescans and reviews every 3 months for the first 2 years and then every 6 months for the next 3 years. Most metastatic disease presents within the first 2 years, but late recurrence has been documented."
So he could be years in limbo after the 3 year mark, perhaps getting CT scans once a year and not knowing what will happen in the future. Perhaps that's part of why chemo for surgically removed sarcomas seems controversial.
> > PS Will Howard be fitted with some type of prosthesis? > [quoted text clipped - 4 lines] > lot of unfortunate extra experience in the past year or so, and > they're working with the latest in myoelectric limbs. Yes, very exciting, I've seen them on documentaries. :-)
> I appreciate the link, J. Thanks. :-) You're welcome. Best wishes, J
Carmen - 28 Apr 2004 03:03 GMT Hi,
> > It's been decided on. Dr. Patel called me at home, and gave me > > the rough outline then I told him that he could call Howard's [quoted text clipped - 5 lines] > With Mesna the combo is called AIM > <http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Chemotherapy_38.asp?sitearea=> Thank you once again. :-)
> The other frustration may be long after the treatment since there's > nothing to monitor (ie "has it shrunk") and apparently there can be > late recurrences > http://www.emedicine.com/orthoped/topic564.htm Snip
> So he could be years in limbo after the 3 year mark, perhaps getting > CT scans once a year and not knowing what will happen in the future. > > Perhaps that's part of why chemo for surgically removed sarcomas > seems > controversial. I'd seen this particular document during my searches earlier on in the game. Howard's take on it is that as long as he's not actively sick and he gets appropriate checkups and keeps an eye on himself he'll be satisfied to just get back to normal.
The controversy on adjuvant chemo is viewed by Howard's oncologists as stemming from the sparsity of data from studies. They've done some, but the numbers of patients are small (synovials being uncommon). We're in agreement that at his relatively young age and excellent overall health it's worth the risks to try and be as sure we got it all as possible. No guarantees but we're hedging our bets. :-)
He's getting a port put in on Tuesday (chest to subclavian vein) and the surgeon said he'd clear Howard for chemo the next day. We'll see how soon the oncologists and the case manager can arrange for his intake at the hospital. I imagine that'll be Wednesday. :-)
> > > PS Will Howard be fitted with some type of prosthesis? > > [quoted text clipped - 7 lines] > > Yes, very exciting, I've seen them on documentaries. :-) We were in the Occupational Therapy clinic today and while Howard was doing his therapy we met another one of the Fort Campbell amputees. He lost his right arm just below the elbow last June in Iraq. He showed us his myoelectric arm - tres cool. Because he had so much damage to his arm he only had one place for an electrode input (on the inside of what's left of the elbow joint) but it still works well. Nice kid, and he filled us in on what we have in store going through (processwise). He also told us that the prosthetics lab in Nashville (a mere 45 minutes away) is worth giving the once over before we decide to go all the way to DC for the fittings. We might well do that.
Take care, Carmen
Julianne - 27 Apr 2004 00:18 GMT > Hi, > [quoted text clipped - 48 lines] > Take care, > Carmen Carmen:
What about a PICC line for your husband? He could get some good drugs - Xanax or something in a large dose, have the line inserted and be done with the sticking. As a pre-med student, you are more than capable of caring for it. His phobia may have no basis in reality but it is just as frightening to him as being held up at gun point.
Just a thought.
j
Carmen - 28 Apr 2004 03:14 GMT Hi, <Background: Husband has a serious needle phobia and is about to go through 6 cycles of chemotherapy - 5 days of each one inpatient on IV>
> What about a PICC line for your husband? He could get some good > drugs - Xanax or something in a large dose, have the line inserted [quoted text clipped - 4 lines] > just as > frightening to him as being held up at gun point. Well I know it. The first time I realized that he wasn't exaggerating how he reacted (not having seen it myself) was when I got myself on the Bone Marrow Registry. I said it'd be great if he would too and he said he didn't like needles but it *was* a good thing to do so he would do it. When the time came he shook, sweated copiously and got horribly pale. I felt awful, since I'd had no idea it was an actual phobia until then. (This reminds me. He needs to be removed from the Registry now. Too bad, he has blood type AB.)
PICC lines are good, but he's only got one fully functional arm/hand combo right now. It'd be unwise to limit his range of activities with that one. Additionally they require more care than the option we've decided on - a port. With some Emla lotion or ethyl chloride to numb the area for even the small prick I'm hoping that the absence of pain will eventually lessen his anxiety for the procedures when done through the port. I can hope. :-) At the very least it'll help save his veins from the Adriamycin.
Take care and thank you for the advice, Carmen
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