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Diagnosis of lymphoma and not sure what next - help/advice/experience

(16 Posts)
fingersandthumbs Thu 18-Apr-13 14:08:29

Sorry if this is a bit jumbled. My mum has been receiving hospital treatment/investigation for some 4 years now.

Initially it started out as regular blood tests due to a thyroid condition indicated that her T cell count was inexplicably high. This was monitored for several months and the T cell count didn't change and there was various discussions that perhaps this was a count that was right for her.

She had a CT scan at this stage which showed nothing of any concern.

T cell counts remained high but static for some time, then 18 - 24 months ago her blood consultant passed her to chest department for investigation as she had started to be a quite short of breath. Following a number of different attempts to biopsy what was in her lungs (not got enough tissue), (need to get tissue from further down the lungs) she was diagnosed with sarcoidosis of the lungs and was presecribed high dose steroids which initially gave a dramatic improvement in the distance she was able to walk without getting out of breath.

The improvement only lasted for a few months and since September she has been in/out of hosital on IV antibioitics and oxygen as her blood oxygen levels have been so low. Each time she has been admitted to hosiptal she has had further xrays and CT scans of her chest and each time she has been told nothing abnormal other than a little fluid around the lungs.

She was started on some form of isotope therapy just after Christmas, one day aweek for 6 weeks. We were told it was because the steroids were not having the impact that they had hoped.

Now after another hospital admission, failed biopsy procedure under CT scan, oxtgen stats down at 73% and us starting to kick up a little fuss she has finally been given a PET scan and she has been diagnosed with lymphoma.

She was given the diagnosis today, the PET scan was yesterday. She is now waiting to have a lymph node biospsy which will help to determine if its non hodgkins or hodgkins lymphoma.

I don't want to google too much. I know lymphoma is a cancer of the blood - but what I can expect/should I expect? What treatment is/could be available? Does it make any difference that she is 70 whcih I know is a reasonable age but as her mum lived into her 90s I feel short changed.

Any advice/experience?

Thank you

Theas18 Thu 18-Apr-13 14:19:57

My 89yr I'd dad has just had a tonsil lymphoma treated.

When your mum has had her pet scan the haematologist will see you to talk treatments. She's likely to be offered chemo of some sort depending on how fit she is. Dad wasn't o they felt chemo would be way too much for him to cope with. However most lymphomas respond well to chemo.

Radiotherapy can also be used - dad had it at a lower palliative dose- we were hoping it could a dose aiming for cure , but the oncologist gave us the choice (dad has dementia so he couldn't decide ). Dad has had bad side effects evn from the lower dose - but any treatment to mouth/head/neck I think is going to be rough.

For us the oncologist was really helpful. Haematologist less so as really it was pretty clear they didn't have anything that they could offer him safely. However I'm sure if you did have a situation they could help with they would have been more use iyswim!

fingersandthumbs Thu 18-Apr-13 14:41:07

Thank you so much Theas18 for taking the time to respond. I know side effects from both radiotherapy and chemotherapy can be horrendous.

Were you given a stage or grade for when your dad's lymphoma was diagnosed?

This is all so very new that I'm not sure if I should even be asking these questions. I suppose I want to feel as informed as possible for when we go to see the consultant for the results of the lymph node biopsy.

Theas18 Thu 18-Apr-13 22:41:16

Yup dad was stage 1 ie only affecting the tonsil.

My understanding was that curative radiotherapy may well have actually been effective but there isn't much point un going for"cure" if what youactually risk, in a gent with dementia and other ongoing Health issues, is making him very unwell indeed for many months (it takes him a month to shed a cold). The thing that makes dads life worth living us seeing my kids do shows/concerts etc-he would have missed the Easter set of shows (and ds had a lead role in a musical). Even without the lymphoma dad is statistically (just because he's 89!) Not likely to be around for many more of these events.

The feeling I got is that, at 89 he may die"with lymphoma" rather then"of it". Your mums situation is very different.she has the"brain power" and physical resilience to go through tough treatment that has a good chance of being curative.

Best of luck to you both :-)

fingersandthumbs Fri 19-Apr-13 09:18:01

Thank you so much for replying. I hope that your dad enjoys many more shows starring his grandchildren.

I think I may be over thinking things before there is an actual confirmed diagnosis, prognosis and treatment plan but its good to hear other epeople's experiences.

Theas18 Sun 21-Apr-13 00:05:00

Thinking of you.

digerd Sun 21-Apr-13 07:32:23

Mys si's MIL had breast cancer which had spread to lymph nodes when she was 80. She had the masectomy, but no chemo, as doc said at her age the cells , good and bad, renew themselves so slowly, she will die of old age not the cancer. She lived another 6 years and the cancer did not cause her death. That was in the 70s. FIL died at 75 earlier of heart attack, like my Ddad in '84 and my FIL in '89.
Men are living so much longer nowadays, and is lovely your dad is still enjoying his grandchildren, despite his dementia.

At his age chemo would probably do more harm than good.

Good luck to him

digerd Sun 21-Apr-13 07:39:08

OP

I have no experience of Lymphoma, but do know that one is less dangerous than the other.
Hoping your mum has the lesser of the 2 'evils'.

For aggressive type of chemo, the patient must be top fit.

Good luck with the results.

eatyourveg Sun 21-Apr-13 08:12:43

df had non hodgkins lymphoma and had chemo - he was 71 at the time

Spookey80 Sun 21-Apr-13 08:29:53

My dad was diagnosed with NHL last year, he is 63. He is normally very fit and well, except for the year leading up to getting diagnosed.
He is low grade, so they he sees the haematologist every 3 mths, or more if he needs/ requests/ gets ill. He is not having any treatment because it is low grade and his symptoms have improved. But this can be reviewed at any time.
Hope you have some support, it can be such a worry.

ibelieveinangels Sun 21-Apr-13 13:37:30

My dad got NHL at age 66. It was stage 4 when diagnosed. After very agressive chemo he went into remission for 6 months, when it came back. After more agressive chemo he has now been in remission for a couple of years.

thinking of your mum

WentworthMillerMad Mon 22-Apr-13 22:21:39

Hi I had Hodgkin's lymphoma a few years ago. Lymphoma is a cancer of the lymphatic system and can result in solid tumours in the neck / chest etc.
I am thinking of you and will happily chat if your mum has HD, lymphomas are so different and you will obviously know more when you find the type and grade etc. good luck x x

Jenijena Mon 22-Apr-13 22:28:55

Mum - 62 - has had two goes at NHL, and is still going strong and just as annoying as ever. In her case, just chemo was used, although the second one was followed by a type of stem cell transplant, after weeks of blitzing her body with high dose chemo. There is lots of research being done into treatments, which means the doctors have various options available (depending on specifics, of course).

Macmillan and Cancer Research both have websites which tell you 'not to read on' if you don't want to, but present the information in a factual way.

VivaLeBeaver Mon 22-Apr-13 22:43:23

Fingersandthumbs,

Sadly my dad has a similar experience to your mum.

He got poorly some years ago and was eventually diagnosed with vasculitis , for which he had high dose steroids and low dose chemo.

Several relapses over the last few years and about six months ago, maybe longer he was told he now had lymphoma. He has a rare type, mantle cell lymphoma. Interestingly they recently told him that its likely the treatment for the vasculitis has caused the lymphoma.

He also has "things" in his lungs according to him......I presume he has lung cancer as well but he's never actually said this.

So he's now had several cycles of chemo, has lost his hair, usual tiredness and sickness. They've stopped treating him for the vasculitis and oddly that seems to have gone away. hmm

His lung function has improved....so much so they're probably going to offer him stem cell transplant. He's been told that realistically its his only hope....but even then its not good odds. He thinks he's going to turn it down as he doesn't want the side effects of it all. Also he's 69 so he thinks even if it does work, how much benefit will he get? Enough to counter a years worth of treatment and feeling poorly?

I'm sorry, I know what a shock it is. I think my dad had grade 3 or possibly 4 when diagnosed. He was affected both above and below the waist which makes it more serious and his prognosis at diagnosis was poor. I hope your mum has a less serious form. If its any comfort my dad looks and feels better now than he has for years!

fingersandthumbs Tue 23-Apr-13 14:20:02

Thank you all for replying. I had typed a long message but somehow lost it on preview.

Viva my mum is a similar age to your dad, I hope that he continues to look and feel better for many more years.

Wentworth if my mum has non HL I would like to take you up on your offer.

We still don't have a formal diagnosis yet. She was supposed to have a biopsy of a lymph node on Friday but she was told that her superficial lymph nodes weren't enlarged so there was no point in taking a biopsy from them. She was supposed to have a biopsy of a lymph node in her abdomen, which she has been told is enlarged (I can see her abdomen is distended where her liver is and it has been getting more swollen over the past few weeks) today but this has now been put back until tomorrow. In the meantime she is still being treated for sarcoidosis as that is the only formal diagnosis that they have. However, she is getting worse, noticeably so since admittance last week.

Jenijena Wed 24-Apr-13 19:41:53

Poor you. I know that once the c word had been used, mum deteriorated in front of our eyes, a huge psychological blow. The first time round she was treated very quickly, the second time it took six-seven weeks before they started treatment (then was delayed by another week so she could attend her mil/my grandmother's funeral). Talking to the doctors, they felt this delay wouldn't make a long term impact on her prognosis, so hope it's similar in your case.

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