Any other long term survivors here?

[KitchenWitch]

I had Hodgkins Lymphoma Stage IIa in 1987. Treated with radiation and have had no recurrences.

The longterm effects of the radiation are kind of a bear though.

[savemefromdumbya]

1. Glad you are doing well

my husband is a survior of 3 years (base of the tongue cancer).

[KitchenWitch]

2. Glad to hear he is a survivor as well.

Was he treated with radiation, chemo, or both?

[savemefromdumbya]

3. just radiation

IMRT killed off his salivary glands too. The first clue was an enlarged lymph node in his neck which was misdiagnosed initially.

Do you feel tired at all? He gets to a stage when he has to have a nap each day.

[KitchenWitch]

4. Not so much anymore

It has been almost 20 years.

I still have trouble with my saliva glands though. That never goes away. I can no longer eat grapes, because they suck all the saliva out of my mouth.

[ulysses]

5. Hodgkin's here

1980-81. :thumbsup:

[KitchenWitch]

7. Wow!

That is a LOOOOOOOONNNNG time!

:thumbsup:

[babylonsister]

6. Yep. BC, discovered 1983.

HAd a modified rad. mastectomy and chemo.

So far, so good.

[ladywnch]

8. I'm a 23 year survivor

I had Hodgkins Stage 2B. I was treated with, what was then, a new chemo regimin. I've had no recurrences and only some minor longterm effects from the chemo.

[merci_me]

9. Both my husband and I

have had cancer, so we've lived through the experience as both patient and spouse. During my cancer, we also were faced with it still being "the dark ages" and we had four kids, 12 to 18 yrs old.

I had a stage III cervical cancer in 1980 and had 45 hits or radiation and radium needle implants. No recurrence.

My husband was diagnosed with a stage IV-B Hodgkin's in 1993. The cancer was in his lungs, liver, stomach and intestines. He had pretty heavy chemo for 7 months. After 10 years, he had a recurrence of the original Hodgkin's. This time it was early and only showed again in the lungs, but still rated a IV-B, because it was determined to be the original cancer. He hated it that even after 10 years, they still did the full battery of tests every 6 months. That was truely fortunate, because they caught him early. Again, he had the full chemo treatment, followed by four or five weeks of radiation, this time. He finished in the spring of 2004 and his last round of tests were in May and he's showing all clear.

Fortunately, we live in Houston, so he had quick and easy access to MDAnderson and an oncologist who is considered one of the tops in the treatment of lymphoma and Hodgkin's in particular.

They're also saying his cancer may be a chronic cancer, something they are researching at MDA. One doctor who saw him back in 2003 about a possible bone marrow transplant has a wife who is in a research study of Hodgkin's (maybe other lymphomas also, I don't recall). At anyrate, they are looking into some forms as being chronic. Evidently, his being clear for 10 years and then to have it show up again, in the exact location and react exactly the same, it's now being thought as possible a chronic cancer as opposed to acute. The study is about a possible development of people like my husband eventually getting medication, not unlike the insulin diabetics take, to keep it undercontrol. Being that he's 69, he said if they get it off the drawing boards, he's ready to go on the program. Of course, this is all speculative, but once again, he's doing fine, though we still hold our breaths every 4 months, when he goes through the battery of tests, as we've done since 1993.

[KitchenWitch]

10. I am glad they caught the recurrence early

At least with Hodgkins, mets seem to take longer than with other cancers.

[merci_me]

11. Yes we have been very fortunate

but his was not a met....it was a true recurrence. It was the exact same spot as the original, deep in the lung. That's one of the reasons they believe it to be a chronic form of cancer. But thanks to the doctors who insisted on the tests every six months, even at the ten year point, it was caught quickly, so it didn't spread to the stomach, liver, intestines or any other site this time.

The first time, it had spread and become a stage IVB, because he had no swollen glands to detect, even at that stage. Just the lung activity and living in Houston, between the humidity and alway having some type of active molds and pollens, he just attributed it to allergies, getting worse with age.

[OzarkDem]

13. Sorry to hear it

but very glad he is getting treated at MD Anderson - they are one of the best. Interesting about the idea of having a chronic type, hope it isn't. Follow up care is so important and regardless of conventional wisdom, it seems catching those recurrences early makes a difference.

[Auntie Bush]

12. Thanks for the post mercy_me. I'm sorry to hear

your husband has had such an awful long extended experience. Both of you have gone through more than your share. I wish you both luck in his next test. When is his next test due and how long has he been in remission? I've heard that kidney cancer can be chronic too. Worst luck

[merci_me]

14. Hi Auntie

It really isn't all that bad. Just during the actual chemo months and til it all wears off. In the course of 13 years, it's really a blip. In 13 years, there have been so many great things in our lives. More grandkids, a great-grandson just fun. Jim coaches Little League, takes the grandbaby swimming, is re-landscaping the backyard and right now up in a tree installing lights. Then tonight we go off to our Progressive Populist caucus cause we have a Congress to turn BLUE.

Granted, the mental stress just before and waiting for the result of each test is nerve wracking, as you well know. The next testing will be early October.

Actually, maybe we're dumb or whistling in the dark, but chronic sounds better than acute, if they get the vaccines for them up and running. The way the doctor explained it, once it is available, it will be the same as keeping tabs on other chronic illnesses. If you take the meds, follow the rules, and get your tests as directed, they should be able to keep it at bay. I THINK they were saying that as opposed to a cancer that mets, in the chronic, the old original just takes hold again, same place, same symptoms and if you're watching that "place", you have a very good chance of heading it off.

In Jim's case, even though the recurrence was considered a stageIVB, because it was the same cancer, it was actually responding like a stageI because they went after it so quickly and very aggressively. He trusted them and let them call the shots. Though the idea of the chemo again was repulsive to him, he did it and now he's back to his regular life again.

And BTW, at 69, and after two encounters with the chemo and the radiation, today he's not on any medication for anything!!! Me? High blood pressure, fast heartbeat, fluid retention, yada yada, I take seven different prescription drugs a day. Go figure. Maybe because I read all the news and he only knows what he hears me b!tching about. LOL

[LiberalinNC]

15. 12 1/2 years cancer free; was 28 when diagnosed w/ Breast Cancer

had one child right before cancer, but had 2 girls after. Life is good!

[pecwae]

16. Thank you all for your stories!

You give me hope through the telling. I was dx'd in 2003 and recurred in 2005 (BC), so I'm a short timer. I have no intention of letting cancer keep me from living fully or in fear. I'm so thankful for this group:grouphug:

[OzarkDem]

17. Good for both of you!

Survivors are a special breed - you both make me proud to be one.:grouphug: