[Anonymous August 31, 1997 at 9:43 pm Post count: 93172]

#1157527

Hi Patricia, My prayers go out for you and your husband Lou.

I felt fine for a year after RAI. My eye disease started a year after RAI. I had had the eye disease eight years previously but stats show a low percentage of Graves patients having eye disease. You should probably sit down again with your Doctor and discuss RAI. It could make you feel better.

My thoughts are with you both. Stay strong and have faith. SAS

[Anonymous August 31, 1997 at 10:29 pm Post count: 93172]

#1053969

Hi, everyone, I haven’t posted much but keep on reading. I was diagnosed
with Graves after a severe episode of rapid irregular heart beat had
me in the hospital a few days in June. My heart finally stabilized,
and I continue to take PTU (with blood tests and dosage changes still
happening, since I seem still to swing between hyper and hypo). The
assumption had been that I would have the RAI in late October, but I
now am uncertain how to make the decision about this.

When I posted last some weeks ago I described my situation as having
the complication that my husband has two serious cancers: he was
diagnosed with chronic lymphocytic leukemia in 1991 (symptoms & chemo
started in 1992, and the condition is now considered more of a lymphoma
than a leukemia) and with melanoma in July of 1996 (a recurrence was
found in March of this year). This spring, the leukemia/lymphoma
began to need more treatment (but things didn’t seem too urgent),
and melanoma was found in underarm lymph nodes, but at least the
melanoma hadn’t reached any internal organs, and there seemed some
prospect that treatment with interferon could hold things in check for
a reasonable period of time (like a few years or more). Two weeks ago
we got bad news from a CT scan; the purpose of the scan was to check
whether the interferon was working, and I guess it wasn’t. The lymph
nodes in abdomen were more severely enlarged (due to the lymphoma) and
there was evidence of metastatic involvement (presumably from melanoma)
in the lungs, liver, kidneys and spleen, and new melanomas and
subcutaneous nodules have appeared on the edge of his original excision,
under his arm, on his forehead, and on the tip of his tongue (the last
was discovered by an emergency room doctor–Louis hadn’t noticed it
yet). The interferon was stopped, but there seemed a little time before
the newest chemotherapy (the Dartmouth protocol, which we are told is
the one remaining treatment he’s eligible for before one turns to the
world of “paliative care”) should start. Then a few days later he
started having pain from the abdominal lymph node enlargement, and then
a fever of 102 the first day, up to 104.7 the second night of the fever.

That’s when we spent the day in the emergency room (he had been seen for
blood tests the previous day, but it still seemed possible to treat on
an outpatient basis). Lou was real dehydrated, it seems, and so they
pumped in lots of fluids (same for me with the rapid heart rate due to
hyperthyroidism in June–isn’t it sweet to share experiences!!!). Then
they kept him in the hospital so they could start the chemo right away
because it’s a three-day IV protocol (on a three-week cycle), so they
could start it right away on Friday a week ago and continue it over the
weekend. That worked out fine, and by Wednesday he was feeling well
enough to go to work (there’s a camping mattress for naps or it would
have been a dumb idea), but these are now very aggressive cancers, and
even if things go well, the chemotherapy will continue on three-week
cycles. Other people could drive him to the chemotherapy sessions, or to
the hospital if things get bad again) but I would prefer to be available
to help him as much as possible.

If I were to have the RAI would there be a period of time when I should
expect to be unable to do much? I’m already tired most or all of the
time, but I am a lot healthier now than just before the Graves disease
was diagnosed.

My endocrinologist seems to imply that it’s a bad idea to postpone the
RAI by very much, and it’s possible I should have the RAI sooner and
get it over with (and I gather that my initial attack was severe
enough that there is little expectation of remission from just using
the PTU). But it is scary to contemplate going ahead with the RAI, with
the risk that I will be in poor health at a point when things go bad
for my husband (and realistically, that may happen in the next few
months). I do expect to postpone the RAI for awhile anyway, to see how
things are going.

At least things seem level for the next two weeks (until the next chemo,
scheduled for Sept. 17-19), and I will be spending some of that time at
a wonderful retreat house in Gloucester, trying to relax in the stress
of this all (it’s only an hour from home, and I will be calling to check
on how things are going, so I will remain available).

I was touched by the discussion of attitude in postings by Bobbie and
Denise. I know my husband seems to have a much better ability to keep a
sense of balance in his illness than I do in mine!

Best wishes to all the warriors

Patricia

[Anonymous September 1, 1997 at 7:23 am Post count: 93172]

#1157528

Hi, Patricia:

I’m really sorry to hear about your husband’s severe problems. I will definitely keep him in my prayers.

As far as your question about RAI, the timing of it: It is not an instant cure for hyperthyroidism, like surgery is, so there is a period of time when the hyper symptoms wane that can drag out. The treatment itself does not typically have adverse side effects, other than the quick release of the stored thyroid hormone in the thyroid tissue that is damaged by it (called “escape phenomenon”)–which elevates the hyper symptoms, briefly. There was a slight soreness in the throat around the thyroid, too. The escape phenomenon period — about a week or so after the RAI — can be treated with beta blockers, and sometimes the doctors also restart the PTU/Tapazole for a while (probably depending upon your individual medical situation and the doctor’s preferences for treatment). But do not equate RAI in your mind with the chemo, etc., that your husband is going through, or with stories that you have heard of side effects that cancer patients experience from radiation treatments. It is nothing like that.

I really do not know whether the stress that you are currently under would play into things to make it more difficult for you or not. My own experience with it (and they are all somewhat unique) is that I had the RAI the week before Thanksgiving last year, and by Christmas I was already borderline hypo, but feeling rather good healthwise. I still had the muscle weakness and some fatigue, but I generally felt “better”. In short, the stress of the holiday season (which I know is NOTHING like what you are going through) did not seem to play into my reaction to the treatment, nor did the treatment make the holidays more difficult/stressful. My own escape phenomenon symptoms were well-controlled by the beta blockers.

Whatever you decide to do (and I think that this decision has to based strictly on YOUR medical needs right now) — postpone it, or go ahead with it — I would strongly recommend that you become vigilant about managing the stress in your life. This can be as simple as ruthlessly weeding out activities/chores that increase the stress or fatigue factor and are not really necessary. And make time for those things that relax you — bubble baths, reading, watching funny movies, listening to soothing music, playing SCrabble with Lou, whatever it is that is relaxing for you. Sometimes, when the events in our life seem most overwhelming, taking control of the small things can help a lot to reduce the stress, but we tend to forget to do it.

I’ll keep you and your husband in my thoughts and prayers.

Bobbi–Bobbi1436@AOL.com

[Anonymous September 1, 1997 at 11:16 am Post count: 93172]

#1157529

Patricia,

So sorry to hear that your husband is ill too.

When I got my RAI about 3 years ago I had waited until I was feeling real bad before I went to the doctor. So I was not of any real good use to my family. I thought I just needed vitamins.

My husband says it took about 3 months for me to start feeling better and to then start taking my medication. I think if I had gone to the doctor sooner that I might have started to feel better sooner.

I will be thinking the best for you and your husband.

Michele

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