I think I have lymphoma

I think I have lymphoma

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Discussion

mclwanB

600 posts

244 months

Friday 10th June 2016
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Bleomycin dropped as standard protocol after 2nd cycle now as is no radio with my exact location. Have had a few harsh/ dry coughs.

Good luck for the follow ups!

mclwanB

600 posts

244 months

Friday 10th June 2016
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Bizarrely felt quite ill after PET CT- soon after injection of contrast had some chest pain. Consultant and I can only assume it was an osmotic effect (water drawn into damaged tissue causing swelling) of the (radioactive glucose they inject into the scar tissue where my mass was.

Just saying incase it helps someone else.

audikentman

Original Poster:

632 posts

241 months

Friday 10th June 2016
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I felt the same at my half way scan frown probably due to so many chemo and post chemo drugs going through your veins already, then they inject you with some nice radioactive glucose.

mclwanB

600 posts

244 months

Thursday 23rd June 2016
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That's 6/12 treatments. Had turmeric in a (not particularly spicy) beef stew last night that really seems to have disagreed with me, going INTO chemo feeling ready to vomit is not something I'd recommend!

Can't believe that this is only nearly (side effects usually develop) half way,,,

Hoping your check ups went ok AKM

audikentman

Original Poster:

632 posts

241 months

Thursday 23rd June 2016
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Half way then, you can start counting down to the end, have you got a PET scan soon?

This time last year I had just had my 5th of 8.

Half way is when my side effects kicked in, how is your hair holding up, any split nails as well?

Check ups went ok 2nd 3 month one, had a tight chest and a cough again frown convinced myself the st had come back, the consultant said ''You would be very unlucky for it to come back so soon'' Funny I thought, I thought I was pretty unlucky to get it in the 1st place.
I walked away with an asthma pump to try to open my lungs up, apparently its a common side effect of the tumour and radiotherapy.

Keep kicking its arse the finishing line is in sight now.

mclwanB

600 posts

244 months

Friday 24th June 2016
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PET ct was 4th of June or so and was clear! Next one after chemo- prob october

mclwanB

600 posts

244 months

Friday 24th June 2016
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Glad checks ups ok.

Still have hair- consultant seems disappointed- and nails ok. Gastrointestinal side effects worst for me so far, peripheral neuropathy sigms nearly gone

Edited by mclwanB on Friday 24th June 16:45

mclwanB

600 posts

244 months

Friday 24th June 2016
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If the pet has gone clear you'd be very unlucky to have it more than once. A friends wife did, he bumped into a random oncologist at a party and told him, he knew her by name. She's still smashed it and has now been in remission 6 years smile

audikentman

Original Poster:

632 posts

241 months

Wednesday 29th June 2016
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If you are affected in any way you may want to join this

Join and raise awareness about this disease. Register as patient, family, researcher or health professional. You can add your organization as well!

https://www.diseasemaps.org/en/hodgkin-lymphoma/

mclwanB

600 posts

244 months

Thursday 21st July 2016
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In case it is relevant to anybody- the effect of cancer on another sort of pet than a PET!

It is nice having an empathetic pet but it can be very hard on them! Webley, my 9 year old Red Labrador, got very depressed when I started getting ill- dogs can smell lung tumours as well as breastfeeding tumours apparently- and didn't want to go for a walk without me (unless there was another dog to go with to take his mind off my dying to his way of thinking).

He seems very confused by the cycles of chemo- he has worked out the sequence or thinks he has. I suspect my smell might be characteristic. Hence the morning before chemo he is very reluctant to walk far as I think he thinks I'm going to overdo it! When chemo was a day late last time he seemed completely bemused. Let no one say he's not intelligent!

Treatment 8/12 today. Consultant cheerfully warned next cycle (treatments 9&10) is the worst but hoping he's wrong! Certainly my mental rebellion at treatment 5 is over although the skin over the veins on the back of my hands appears to be elephant like in its cannula bending properties....

So it's all going as well as can be expected and hopefully we can put Webley's mind at rest soon!

mclwanB

600 posts

244 months

Tuesday 2nd August 2016
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Getting very sick (literally.. well nauseous/ horrendous reflux) of abvd now! This cycle has been rubbish, felt ok after 8 days but day 11 and 12 not good either... Hopefully the last day before the next poisoning attempt will be better.

Am believing the consultant in that the next 2 will be the worst!

Any ideas for the reflux appreciated!

audikentman

Original Poster:

632 posts

241 months

Wednesday 3rd August 2016
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Sorry its getting worse, the 4th of August last year was my final 1, the end of the chemo must be in sight now.

If its acid reflux I had it after about the 3rd cycle , get some Omeprazole from your team or your Gp.

But if its just sickness reflux then theres not much you can do apart from take all the anti-sickness drugs the hospital give you

Edited by audikentman on Wednesday 3rd August 00:33

mclwanB

600 posts

244 months

Wednesday 3rd August 2016
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Thanks Audi.

Unfortunately on twice daily omeprazole already- think it is nausea reflux.

Just finding only thing that helps is not eating after breakfast on the day of chemo for the next few days. Will try hard to remember to ask them tomorrow- was too sleep deprived to remember last time!


audikentman

Original Poster:

632 posts

241 months

Thursday 4th August 2016
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Sorry not much help, have you spoke to the hospital? I mentioned the heartburn and got put on the Omezaprole, from then I learnt not to suffer in silence.

I was the same on Chemo day, just a slice of toast for breakfast, then a bag of Marmite crisps when I finished, then on home by train and onto the sofa to feel sorry for myself.

No sleep when you want to sleep (was waking up at 4.30 most days) and when you want to sleep full on fatigue and tiredness was what I had

Also the chemo smell, I met some friends while I was going through it, 1 of them who had breast cancer and chemo said she could smell the chemo on me, I guess your dog is the same.

How many more sessions have you got left and will you need radio afterwards?

mclwanB

600 posts

244 months

Thursday 4th August 2016
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Not great unfortunately- had a discussion about binning the vinblastine because of mild (grade 1) peripheral neuropathy signs but got talked out of it despite what I do for a living. Papers and forums are all very well but in ?20+ years of prescribing vinblastine the consultant has never seen a severe cases of peripheral neuropathy and all the mild cases he's seen have resolved with time. So we went with it.

Regretted it 5m into vinblastine infusion as I brought up breakfast and what they looked like dinner the night before frown. From the reaction this is extremely rare to happy in the clinic especially on emend

Asked about reflux and consultant had nothing to add to the nurse specialist I asked earlier in the week. Double dose omeprazole and properly raise top of bed- which I'm still doing with the giant beanbag I had when I was coughing lotd

mclwanB

600 posts

244 months

Thursday 4th August 2016
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No radio, 3 more after today

mclwanB

600 posts

244 months

Thursday 4th August 2016
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One thing I have noticed is that exercise helps a lot (not going mad!). Read a few papers about it, have been walking c5 miles with dog most days and try and dog it early before I get aching legs- helps prevent. Helps peripheral neuropathy signs too. Also am trying to row 3k on an ergo (@ home not at a germ infested gym!) When I'm up to it and feel a lot better when I can

Oakey

27,523 posts

215 months

Monday 19th September 2016
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Oakey said:
I suppose I better go then!
So, er, yeah, I finally got around to doing this. I said that in April 15 and only now have I seen my GP. Admittedly it came and went so I just kept putting it off and putting it off.

I'm booked in for a blood test this Thurs and I've got to go for a chest X Ray for the cough.

mclwanB

600 posts

244 months

Wednesday 12th October 2016
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Good luck with that Oakey.

Finished treatment 12 of 12 four weeks ago tomorrow. The immediate side effects are receeding more definitely now so I'm feeling more like I've actually finished chemo! Just a bit constipated, intermittent metallic taste and tireder than normal. For some reason they seemed to have dragged on longer after the last one.

Should be back at work at the start of November, have another PET-CT scan early in that month too. I've kept up with the walking 7+ miles a day which might have backfired with the occupational health assessment- he wants to overrule the consultant and wants me to start back now! Meeting to discuss everything at work next week so will see what they say. Job is very demanding and hr seem sensible so fingers crossed!

mclwanB

600 posts

244 months

Wednesday 12th October 2016
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Peripheral neuropathy has largely resolved- do get cramp intermittently in hands/ feet- anybody else had that?