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In Remission, having symptoms, nothing on CAT scan.

Floranne
Posts: 1
Joined: Aug 2004

Hi Everyone,
I had 12 treatments (I guess that's three cycles?) of ABVD for Nodular Sclor. I have only been in remission for three months. The CAT scan and PET scan indicated no more cancer back in mid May. For a month I felt fabulous, full of energy, I told people I hadn't felt that great in years. But now I am getting all the old symptoms back (tenderness in upper abdomen, ichy skin, back pain, fatigue and weakness). I feel exacty the same as I did before I did the Chemo. I am already on thyroid meds, have been for years. Anyway, my CAT scan came back clean. Now my cancer doc is telling me to go back to my primary care phys. and find out what it could be. I am back to where I started, I tell people I am sick and no one can help me. It feels exactly like my cancer did, but there is no cancer. Has anybody else had this happen?

KathySue1955
Posts: 6
Joined: Feb 2004

I really hope you aren't having a recurrence. I don't want to be an alarmist, but our experience has been that PET scans are more reliable than CT scans. My son has HL IVB (NS). His staging CT scan showed tumors only in the chest and lungs, but his staging PET scan showed cancer in the spleen and sacrum as well.

I'm a strong believer that patients know their bodies and should be listened to carefully. My son had an auto SCT in April. He began having hip pain a month ago. His onc said it was highly unlikely to be the cancer back so soon, but he did a CT and PET scan and guess what? It's back.

You should keep after your doctors until they have a satisfactory explanation for your symptoms. I wish you the best.

Kathy

PennyP
Posts: 12
Joined: Dec 2003

Hi Floranne,
So sorry to hear of your predicament.
I am 18 months past ABVD and radiation, and exactly the same thing is happening here, except I feel worse than before I was sick. Initially, my only symptom was EXTREME itching, that could not be controlled. Then a lump in my neck, and the rest, as they say, is history.
Now, as time passes, I have swollen glands in my neck, constant chest pain, shoulder pain and ever-worsening fatigue. The oncologist says go to the GP and the GP says go to the onc. No one is figuring out what's happening. I don't know whether to be more angry or more afraid. The onc thinks chemo (which I reacted very badly to) caused fibromyalgia, so that's the guess, but no tests to verify and make sure it isn't hodgkins or some other form of cancer. I wake up with night sweats and have a lot of trouble sleeping. I am gaining about 2-3 pounds per month, with no reason... My itching has come back twice, then gone away after a few weeks.
Like you, I'm at a loss. But what do we do? That is the million dollar question.
Legitimate concerns - treated like hysteria or insignificant.
I haven't had my 3 month check for 7 months now, and no PET and CT only to the neck and chest.
To say I feel your frustration would be like saying the sky is a little bit blue.

PabloSaenz's picture
PabloSaenz
Posts: 6
Joined: Jan 2005

Hi Florane,
I Finish al treatments Chimo and Radiation November 20, 2004 . I was feeling Ok. after that with the normal side effects, but day after day I was more energizer. Now 2 weeks ago I start again with a back pain with rash, my Onco say that this is side efects from radiation but he is going to perform a CT Scan Next week just an case, I'm very worry. I hope you are doing well now ....god bless you.

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