Advice and support needed

Joanie · New User Joined: 01 Aug 2009 Posts: 3

My mother in law was diagnosed with non Hodgkin's Lymphoma (in the neck) last November when she was 82. She had many tests, and finally a mild course of chemotherapy. We were waiting to see if she would also need radiotherapy and then the lump in her neck returned about 6 weeks ago. At the same time she felt very sick, lost her appetite and a lot of weight and was very tired, other than that she has not felt ill at all.

After a full body scan three weeks ago we were told that it had spread to her liver and as she is now 83 and looking guite frail they said there was nothing else they could do.

The impression we had from the doctors at the hospital was that she only had a matter of weeks left to live but her GP said it was more like months. She has been put on a course of cortisone tablets (Delta Cortone) and I can honestly say that she has never appeared so well in her life. She has always been a rather tired, depressed sort of lady and now she is full of beans and seemingly enjoying life to the full. Her normally good appetite has returned, she is putting on weight and her hair has grown back. Is there something we have missed? I think that what I am trying to say is 'are these pills just causing a false effect and actually not doing anything to cure her symptoms at all?'

It is just that looking at her now it is very hard to believe that she is likely to become quite ill and possibly die over the next few weeks or months. Any advice, help or previous experiences of this illness and medication would be greatly appreciated.

Don · Posted: Sun Aug 02, 2009 5:11 am Post subject: Cortisone

Hi,

I am the first to "chime" in...there will be more.

We are not Doctors, only patients, so our advise is only our opinions.

I am sorry you are having to deal with this; my prayers are with you.

My impression is that the extra vigor is due to the steriods. Apparently, they can mask a lot of symptoms.

God Bless...DonB
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan · Posted: Sun Aug 02, 2009 4:14 pm Post subject: Re: Advice and support needed

Hi Joanie

First of sorry to see you posting here, and sorry to hear your mother failed her initial treatment.

Cortisone is considered a chemo agent in the treatment of HL and NHL, it shrinks tumors and was one of the original drugs used for HL. It also will give the patient a big lift and gives one a euphoric mood. Dont be too concerned about it as it does have a marked therapeutic effect and may very well extend your mothers life considerably as well as give her a psychological boost at the same time.

Good luck I hope your mother is around for some time to come and her current positive mood continues. All the best
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Joanie · New User Joined: 01 Aug 2009 Posts: 3

Thanks Don and ChemoMan for your kind words and advice.

I know you are not doctors, I think these things are always a shock and you find yourself looking for answers anywhere and everywhere. Just talking about it is comforting and helpful as I am sure you all know.

I think the difficulty is that you don't really know what the doctors are thinking and there seems to be conflicting statements from them all. But, as someone pointed out to us 'Doctors are in the business of prolonging life, not predicting death'.

Good to hear that the cortisone could actually be doing some good as well as making her feel on top of the world. I don't really know why the hospital doctors insinuated that she could only have weeks left, just because of her age I suppose. Anyway, she is seemingly getting better and better by the day so fingers crossed.

Thanks again.

gs963 · Regular Joined: 27 Jul 2009 Posts: 19

Jonie, My mother seems to have the same type. I assume Your Mother in law was stage 1 B cell. IS this correct?? I am curious why they went mild chemo. Was it because of her age?? My mother is 80. And is awaiting Chemo to begin.She just got the good news that PET scan showed her neck was the only place that had it. Anyone can comment on this if they want to. This is ALL new to me. I hope your Mother in law improves!

[quote="Joanie"]My mother in law was diagnosed with non Hodgkin's Lymphoma (in the neck) last November when she was 82. She had many tests, and finally a mild course of chemotherapy. We were waiting to see if she would also need radiotherapy and then the lump in her neck returned about 6 weeks ago. At the same time she felt very sick, lost her appetite and a lot of weight and was very tired, other than that she has not felt ill at all.

After a full body scan three weeks ago we were told that it had spread to her liver and as she is now 83 and looking guite frail they said there was nothing else they could do.

The impression we had from the doctors at the hospital was that she only had a matter of weeks left to live but her GP said it was more like months. She has been put on a course of cortisone tablets (Delta Cortone) and I can honestly say that she has never appeared so well in her life. She has always been a rather tired, depressed sort of lady and now she is full of beans and seemingly enjoying life to the full. Her normally good appetite has returned, she is putting on weight and her hair has grown back. Is there something we have missed? I think that what I am trying to say is 'are these pills just causing a false effect and actually not doing anything to cure her symptoms at all?'

It is just that looking at her now it is very hard to believe that she is likely to become quite ill and possibly die over the next few weeks or months. Any advice, help or previous experiences of this illness and medication would be greatly appreciated.[/quote]

ChemoMan · Posted: Fri Aug 14, 2009 8:11 pm Post subject: Re: Advice and support needed

Hi gs963

So sorry to see you posting here. Please start a new thread and try and give us an idea by what you mean with "Mild chemo" and as much info as you can and we will try to help.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Joanie · New User Joined: 01 Aug 2009 Posts: 3

Hi gs963

Sorry to hear about your mother and hope that all goes well for her and that she makes a full recovery.

Things with my mother in law were a little complicated as she had other problems. She had previously been complaining for many months about having blood in her urine and she had been and had many tests, all of which found nothing. She also has very, very sensitive skin and had been suffering more and more with itchy rashes over various parts of her body, which because of her history we thought nothing of. She also has an underactive thyroid, high cholesteral, aching muscles and high blood pressure and is on medication for all of these things.

Anyway, at the end of last November, her thryoid swelled to such an extent that she looked as though she had an egg in her throat and she couldn't swallow and kept choking. We took her to the hospital and they did tests and it was then that the lymphoma was discovered, the enlarged lymph node was hidden by the swelling from the thyroid. As they were worried about other things she underwent a series of tests to work out a course of treatment for her.

While we were waiting for the results she came to me and said that she didn't think the blood was in her urine, but that she was actually bleeding (as in menstruation). You can imagine the panic then and we took her straight back to hospital and by the time we got there she had rashes all over her body and blood blisters in her mouth. It turned out that she had a dangerously low platelet count and she was rushed to a special hospital about 2 hours away. She was in there for two weeks and finally they had only one thing left to try, other than an operation on her spleen, in order to raise the platelet level. Luckily, they succeeded and now that problem is very stable. I think this is the reason that maybe she was not given quite the dosage of chemotherapy that she should have had. They waited as long as they could before giving it to her and she had to have it for two months longer than they initially said so I am only assuming that it was either a smaller dose each time or a milder dose. She never felt ill at any point during the chemotherapy, not even slightly and never lost her enormous appetite.

We have to take her back to the hospital every week to have her blood levels checked and she had a body scan just after her chemotherapy and all was well. We were waiting for a date for her to start a course of radiotherapy but about two months ago she started complaining about feeling sick and was retching a lot but not being sick. She was very tired and started to rapidly lose weight and went off her food (a most unusual event for her) and then she noticed the lump had returned in her neck and was growing at an alarming rate. Another full body scan showed that not only had the lymphoma returned but that it had also spread to her liver.

We were told that radiotherapy would now be of no use, and they weren't too happy about another course of chemotherapy because of her age. They put her on a course of cortisone tablets and I cannot believe the results. She seems to get better day by day, feels fantastic, is gaining weight and the lump in her neck has not grown any more. We are waiting now to see the doctor again next week and having spoken to him on the phone it seems they may try chemotherapy again.

I know this is very long winded but from what I have seen from looking around this forum, it is good to have people's symptoms and experiences recorded for others to see.

I hope this helps someone and I will keep you all informed about my mother in law.

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