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Finally diagnosis

Kellie75
Posts: 17
Joined: Sep 2017

My daughter had a pet scan and CT done on Tuesday. She had port put in on Wednesday and her 1st round of chemo(ABVD). Doctor called me yesterday and said she had classical Hodgins lymphoma, stage 3 with symptoms. She has a 9cm mass in chest. They going to send her to radiation for consultation after she's done with chemo. They said she's going to have at least 6 cycle's. After 2 cycles she'll go for another pet scan to see if there's any metabolic activity. The day after chemo she was acting like her old self again and way over did everything. That night she was exhausted and slept most of night and next day. I'm not sure if this is normal or not? Today she said she can taste throw up in her mouth. I gave her all her meds and said to rest.  This stuff is all foreign language to me. Can anyone break this down into common language? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Your daughter having got started means she is on the road to recovery.  Some of what I'll write repeats stuff I wrote on your first thread.

Classical Hodgkin's (CHL) is almost always beatable.  There are 4 types of CLH, but all have more similiarities than differences.  She has significant disease at stage 3.  "With symptoms" probably means that she has disease symptoms like night sweats, which are also called "B Symptoms." (Not everyone with Lymphoma shows these symptoms.)

A 9cm tumor is sizable, about 3.5 inches across, or around the size of a medium onion.  It is just a node that has expanded into massive size. The first treatment is no doubt already busy in reducing the size.

ABVD is the most common set of drugs used agains CHL, very effective.   She will be getting a LOT of it, at 6 cycles, the same amount I got.  Because i cycle is two infusions, and an infusion comes once every 2 weeks, it is six months of treatment, or 12 infusions. Since the oncologist said "at least six cycles," is is possible that he thinks more infusion are possible, depending on how things go.

Drugs in ABVD can cause taste changes, but odd taste sensations after just one infusion is unusual. Ask the doctor about it.  I lost all sense of tase after about 3 months of application, but this is temporary, and normal taste almost always returns. Most people on ABVD have some taste changes, but do not lose it all.

Most ABVD patinets lose all of their hair within a week following the second infusion. A few keep some hair, but most do not. I even lost my eyebrowns and eyelashes. But agaoin, almost all patients have full or nearly full hair recovery.

Exhaustion will be normal. It worsens as more treatments are given over the months,so just be expecting it.  I slept a minimum of 15 hurs per day on ABVD.  She will weaken and have a reduction in desire to eat.

These are all typical, common reactions.  FOcus on the wellness that is to come.

Radiation is uncommon in advanced CHL, but sometimes used against what is termed "bulky disease," defined as the presence of a set of very large tumors.

I hope this is simplified enough and will assist you as the two of yo move along,

max

Kellie75
Posts: 17
Joined: Sep 2017

Thanks Max. That explanation helps alot. Doctor kind of just ran thru diagnosis and I felt overwhelmed. Sorry you had to repeat some of it. She hasn't been at work since the 10th because she was coughing so much and exhausted. Were you able to work during treatment? I was reading with this type of cancer you can't get disability. Not sure how financially we're all going to handle things but 1 day at a time. Did you have to have any home health come in to assist you with anything? Doctor said she can return to work once she feels up to it or if she doesn't until chemo is over with is completely up to her. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

1.  After I began ABVD I felt pretty OK, and went back to work for about 2 months. Then, I got so weak and sick that I could not go back or do much of anything, and was out for work for about 10 months straight.  Anticipate the worst.

2. Regarding disability, ask a lawyer, or at least go by the social security office and ask them. Do not assume that anything you read online regarding cancer is accurate, because usually it is not (depending on source of the information).   I have never heard of one variety of Lymphoma being treated differently than another regarding disability.  "Disability" can mean differing things.  Disability from the government has very explicit requirements, but the SSA will tell you what these are.  Disability also is either temporary or permanent.  And disability can also refer to income from her employment, if her job has such policies.  Job-related disability is almost always temporary.  AFLAC or similiar policies.   You would have to ask her employer about this.

3. I never had home health, but my wife was home from work each evening and essentially was a nurse to me.

4. Nothng in Lymphoma chemo makes a person legally unfit to be at work. The doctor is correct: It will be her judgement, and whether she is up to it.  But me, there was no decision to make, given that I could hardly stand or walk more than about 50 feet at a time, maximum.

max

mom03
Posts: 2
Joined: Oct 2017

I have a question...... I have never been on this site or another one like it.  I was reffered to a hematoligist/oncologist be my Dr. due to High White Blood Cell, High Red blood cell, and high Platelett count......any idea what is wrong with me

 

po18guy
Posts: 1007
Joined: Nov 2011

Mom03, you need a hematologist, as those conditions ocurring together are not indicative of any cancer I know of. Something is stimulating your marrow to over-produce. But what? Just have patience as you undergo the diagnostic process - and it is a process that takes time.

mom03
Posts: 2
Joined: Oct 2017

Thank You. :) It is hard waiting...... A million things are going thru my head :(

 

po18guy
Posts: 1007
Joined: Nov 2011

Blood, immune system or marrow cancers will cause a rise in one of those numbers (and a drop in the others), but not all three. There are many different blood and marrow disorders to investigate that are not cancerous. If this was based on a single blood test, just ask for another. I might be an anomaly at the lab, or just a really weird sample. It happens. 

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