Husband diagnosed - story so far

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

Hi everyone, I am new to this forum so hello to you all.

My husband had a lump on his neck which appeared over 4 months ago and as it did not go down after a week he went to the GP. He said wait another month which he did and he was then referred for a needle biopsy. This came back OK but they were still concerned so he had two more which also showed nothing. He then had a chest x ray and a neck CT scan, both also showed nothing unusual!

As everything had come back OK by the time the actual biopsy was to take place were were not so worried. My husband is a very fit and healthy 32 year old so although the thought crossed my mind we didn't really think it would be cancer.

My husband went to get his results last Thursday, just a lymph node disease the doc said but we will scan to make sure no where else and it should be easily treated with a few injections. Phew, not cancer we thought! When my husband got back I made him call the consultant to find out the actual name, at this point we had no idea it was cancer but I was not happy that he came home with little detail.

The next day the hospital rang and said it was non hodgkins lymphoma and we did not know what this was so I looked it up on the internet and as you can imagine I was devastated! I had to break the news to my husband who I shamefully admit coped much better than me with the news.

Needless to say the weekend has been awful, reading all the terrifying info but today I am feeling stronger and more positive. He has got another appointment on Wed so we will find out exact type of lymphoma and then we can push for the other full CT scan ASAP

We are hoping that it has not spread, he has no other symptoms and is otherwise very healthy so we are praying that what ever it is, what ever stage it is at he will have the best chance possible.

However, I am really, really scared, cancer is such a frightening word!

Tess

kelly33 · New User Joined: 07 Sep 2009 Posts: 5

Hi Tess,
i understand so much in what you are saying, my 12 year old daughter has HL stage 4B, we have only been living with this for 3 weeks now,

i too looked on the internet and it, to be honest scared the liven shit out of me,

cancer is such a scary word but a doctor told me to say it all the time, make it a part of evey day conversation, and you know, we do that all the time now, we say CANCER, its not so scary after a while, the word i mean,

iam in no position to give advice here as im looking for information myself as iam also very new to the cancer world, but i do know that for me reading others stories helps, your not alone, although most of the day you feel alone, your not,

im in the mind set of thinking that we are special people put here to deal with this for a reason, what that reason is i dont know, i look at life so much more clear now, this cancer any cancer is growing more and more in this world and it takes people like us and the people on here to beat it.

i have started asking that question WHY? then a friend said to me "you ask why, because you can" now just read that again and think about it, it is so true, we can, we may not get the answers but we can still ask, there are people who have never had the chance to ask, but we still can, like any thing, WE CAN STILL DO IT, WE CAN STILL BEAT IT, WE CAN ASK QUESTION, so if any my advice to you is so what ever you want when you want,

my thoughts are with you and your husbane and family, good luck
Kelly

SingleDad · Last edited by SingleDad on Mon Sep 14, 2009 9:51 am; edited 1 time in total

Hey Tess - take the lead from your hubby and relax, no question it
is scary the first while given the unknowns but you have a diagnosis and a highly treatable condition.

Let us know the stage and the exact type he has......good on the persistence to get it diagnosed correctly = now you will be on a fast track fro treatment....stay positive and perhaps read through some of the other journeys here that had successful outcomes....

He has youth and you going for him and a very treatable form.
Your fear is a downer for him - stay upbeat and positive and once he gets into chemo you can be a stabilizing factor as he is likely to have mood swings and energy lags...you might however during steroids get a super house cleaning hubby.. Wink

My advice is keep his condition a close secret for now as sometimes friends and relatives can be more of an energy drain... let him decide the circle.

Once you are into chemo you'll need the focus and peace to deal with that....not well meaning friends and relatives who take energy to deal with....you can be a shield for him in that regard.

Don't stray too far outside this particular area as some other types of cancer are quite the horror show and don't apply to your husbands lymphoma.

Where are you located ( what country )?

Stay positive ...

See my signature.....diagnosed in Feb - cancer free in July...that's the outcome you want,,,,and it's a common result these days for lymphoma.

The more info we know the better we can help answer questions...

Encourage him to start a diary as it's useful for reference for side effects.
I found diarizing here useful and was surprised at the number of friends and clients who wanted to read through it for their own interest or they had family undergoing chemo or had undergone chemo and wanted to know.

I only let it be known AFTER I had a remission ticket from the doc and the good wishes were a real positive in getting over the side effects. But it took a fair bit of energy to deal with those good wishes...something I could ill afford during the chemo....

Good luck - he's fortunate to have you around...being a single dad was sometimes a strain but staff were terrific and so were the kids...missed having a sigO nearby to lend energy and upbeat but a close friend far away did very well and this forum was terrific as well.

Let him in on the secret... Mr. Green

_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

Thanks Kelly and Single Dad for your kind and thoughtful posts. It is certainly strengthening to hear from other in similar situations.

We are in Lincolnshire in the UK, in a rural area so will probably have to prepare for plenty of travelling!

I will post further details on Wednesday when we have been back to the hospital and in the mean time try and find time to browse these boards. I am particularly interested in finding out about complementary therapies and have been reading about the CAAT nutritional approach to cancer. If anybody has any info about herbs and supplements that have cancer inhibiting properties then my ears are open!

Cheers, Tess

SingleDad

Be very careful with any alternative nutrition as preventative eating is way way different that eating during chemo and some "healthy" stuff for the normal person can hamper the drugs.....

Ask your docs and stick with their recommendations.

He will need lots of protein and fat to deal with the internal insult his body will undergo

This is a somewhat humorous but accurate look.

http://mediastinalwhat.com/_chemo.html

The docs will monitor his weight and blood work to see how well he is doing each cycle.

On steroids he will be very hungry - I asked my doc about eating and he said eat....now is not the time to be weight watching and doing the high fibre fruit and veggies...

His digestion will be poor due to the side effects and he won't absorb what he normally does let alone what his body will demand as his immune system gets torn down and then rebuilt.

Low stress, high positive and high energy food that is easy to digest.
His taste buds will change so you'll have to adjust for that and stay away from the spicy and hard to digest..

My docs said stay off any supplements beyond a one a day vitamin as they can interfere with the controlled poisoning....as that is what chemo is - you'll understand if you read the above.

The high anti-oxidants and high fibre diet that is cancer preventative shold be put on hold as it' counter productive during chemo.
Chatted with another who's 80 year old mum is going through it and her mum came up with PB and J sandwhich....perfect - comfort food and energy intense.

Let us know what chemo type he will undergo and we can help you understand the likely stages he will go through

Once you get one by with no bad allergic reactions you'll have a better grasp and the normal course is loss of energy over the treatment period....the first cycle is often not a huge challenge to the body but of course there is "fear of the unknown" to deal with...

Be positive, detail changes as the docs need to know, and stick with the docs advice not "alternatives" - this is extremely treatable/curable - don't get in the the way of that.

Save the healthy diet for the rebuilding stage after chemo....once he gets into chemo he's in a war zone and flat out needs high energy foods in easy to digest forms.

I found smoothies with banana's work well - small high energy meals more frequently and go out and get some ginger pills - they are useful additions to the anti-nausea meds.
Mint teas help as well....with honey of course Wink

The docs will check his weight and blood work - eat as he's hungry and if his weight stays stable and his blood counts up then you are doing it correctly...participate with him in monitoring that .

Sleep and lots of it is ideal and he WILL crash at unexpected times as he runs low on energy.

Stay away from high stress and long days when on chemo - it's astounding how quickly your body can run low on energy...
His body and the chemo together can beat this more often than not....put all the conditions in play and listen to your cancer team and do ask questions....here and there..

••

This seems a well balanced article on CAAT and stresses the avodance of anti-oxidants and the emphasis on fat and protein

http://www.artipot.com/articles/339720/the-efficacy-and-safety-of-caat-controlled-amino-acid-therapy-on-cancer-cells.htm

Talk to the docs but be careful as cancers are widely different and lymphoma treatment is pretty solid and you don't want to risk interfering with the known success method.

Tread carefully on any diet and alternatives and keep the docs informed..
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

Thank you again SingleDad for sharing your experience, I will check out those links. From your signature it looks like you only have a few more days of treatment to endure! I really hope all goes well for you Very Happy

SingleDad

Yes - two more weeks and a bit - daily radiation which takes about 15 minutes total time....so no big deal .....I get a sunburn as a reward...

It's purely pre-cautionary as I am cancer free as far as they can tell.

I will be monitored for a couple of years...

Now it's just getting past the residual side effects, growing hair back etc.

Thanks for the good wishes.....it actually could not have gone any better....quick identification and quick response - one of the more common cancers and I responded well to treatment...

Doc's "no cancer" statement caught me off guard actually - I made him repeat it....did not think they would declare a remission so quickly.

So that's what you are shooting for and your hubby is half my age....stay positive.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

ChemoMan

Hi Tessa1980
i am so sorry you have found yourself here. Dont fret too much the likely outcome is that your husband will be in remission at the end of treatment. The breakdown of the tumours is very dramatic once chemo starts and it should give you confidence in the future.
SD was right don't take any complimentary therapy unless you get the all clear from the doctors. At this point your husband has cancer so taking anything to prevent it is pointless. We cant really offer much support until we know what type and stage your husband's lymphoma is.

Good luck with the tests and keep us posted.
_________________
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

SingleDad

Actually CM that CAAT therapy is designed to help the chemo but it's certainly not in any wide use I can see but the science seems sound.
It would also seem to require a match with cancer type and location to be effective.
Did you go through the article?
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

aisha1

Hi,

I'm sorry to hear about your husband's diagnosis. I hope you will get a clearer picture soon enough.

I'm not in a position to give much advice on NHL (the others like SingleDad and ChemoMan are more likely to be of help). What I would like to do is reverse a little bit.

The way they diagnosed your husband is not on! I know that no one here wants to exhaserbate your situation and that is because this is all very new, but while this IS all very recent, you must sort this out.

I don't know why, but doctors seem to be doing this now - they don't give you any info, they give you less than vague answers, and even as in your case, they don't even tell you YOUR OWN diagnosis. This is awful.

You have to explain to your doctor that he/she has made a big mistake in doing this (even if they were trying to protect you). You must explain that they haven't calmed the situation, but in fact made it worse, by leaving your only option - THE INTERNET. (I'm not talking about the forum). Very Happy

The internet can be a scary place if you are trying to find out information about a diagnosis, or in your case, a VAGUE diagnosis. You have to make this clear and tell them that you worried MORE than you would have if it would have came from their mouths, in a precise and clear way, with stages of what will happen next.

I'm sure most people would agree with me. While you don't want to stress yourself or your husband any further, you need to bring this up. I have had the same kind of treatment, and I am going to also bring this up with my doctor on Wednesday at my next appointment.

On the other hand - lymphoma has a great outlook. From all of the cancers, this is the one that is the most treatable with posistive outlooks for remission and mostly, CURE!

Chin up, I'm sure that your tests will come in soon, and you can start to fight this.

Keep updated with info,

Aisha
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

Hi Aisha

I agree totally and I shall definitely mention this at our appointment tomorrow. I can not believe they do this, who are they to make the decision that we should be shielded from the real diagnosis. Unreal! If this was not such a serious situation and I was not so upset I would be on the war path! As it is I am saving my energy for my husband and he is so laid back I don't think he would appreciate me dressing down the doc! Laughing

Hope your appointment goes well tomorrow too Smile

Tess

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

Well, we are on the way to having a full diagnosis. So far it is High Grade - Diffuse Large B Cell Lymphoma, stage 2 but we are still awaiting the bone marrow results.

My husband had his first R Chop last Thursday and the plan so far is to have 5 more cycles of the R Chop and then finally 2 of the Retuximab alone. Four days after the chemo my hubby is still feeling OK but we are prepared for things to get worse, if not in this cycle of treatment then the next.

We are just hoping and praying that it has not got into his bone marrow and will hopefully find out the results next week.

Tess

SingleDad

Very high cure rate and the bone marrow is precautionary....

Relax now - you have a diagnosis and a course of action....

You can read my diary or others to get a sense of CHOP+R over time.

Don't over anticipate - the fear of the unknown is by now.

Your next session will be shorter as his tolerance is good.

Easy to digest food and lots of it but I found smaller high value meals the best.

Go out and have some fun and enjoy life. Keep stress low and outlook positive as it is.

Been there done that.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

Tessa1980 · New User Joined: 12 Sep 2009 Posts: 6

[quote="SingleDad"]Very high cure rate and the bone marrow is precautionary....

Relax now - you have a diagnosis and a course of action....

You can read my diary or others to get a sense of CHOP+R over time.

Don't over anticipate - the fear of the unknown is by now.

Your next session will be shorter as his tolerance is good.

Easy to digest food and lots of it but I found smaller high value meals the best.

Go out and have some fun and enjoy life. Keep stress low and outlook positive as it is.

Been there done that.[/quote]

Thanks single Dad

Now we know what we are dealing with we are feeling very positive and looking forward to the future x

ChemoMan

hI Tessa1980

Glad you are both relaxed about this, it is definitely the best approach. By far the worst side effect is fatigue which will get worse as the treatment goes on and at the end your husband will be sapped of all energy. This is a given and common to everyone who has R CHOP. Other than that side effects are very individual, your husband may not even lose his hair, or suffer nausea. The regular posters here who have had R CHOP are SD, joepet and myself, you can read the stories if you want more info, if you haven't done so already.

Good luck and fight the good fight, at the end of this your husband will in all likelyhood be in remission. The trick is in staying there.

heres to many more trips around the Sun for you both Smile

_________________
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

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