They found something growing in the lungs

[Wolfcub]

Oh and another thing @HABS93
We are here for you. If you want to update, chat or anything else here as things go along -okay?

 

[HABS93]

Good luck and keep strong! Speaking of Montreal and as another hockey fan, it was now almost 20 years ago, but I still remember when former Canadiens captain Saku Koivu got diagnosed with non-hodgkin lymphoma. I remember things looked pretty bad at some point, but incredibly he returned back at the end of the same season and the following season he had his strongest ever year.

You picked my favorite player Saku Koivu . As a kid when he went through that I thought that's my favorite part coming back to face a tough Boston team. How ironic but his battle was alotm ore tough
Atleast I think. I really appreciate the love from everyone <3

 

[HABS93]

Keep getting this vertigo sensations when I'm just sitting . I use to get these alot more but kind of went away. Can't imagine how bad this chemo is going to feel. Will these symtptoms start to disappear as I go into remission or is it completely healed ? So many questions . I feel worse since the diagnosis then before.

 

[YippeeKi YOW !!]

@HABS93
Chemo is not fun, but I gather that dying is no picnic either. The first 2 or 3 treatments are the worst, it gets easier after that. And from what I've read, there are new protocols that aren't anywhere near as bad as 'the old days' a few years ago.

You will definitely start feeling a shift as the cancer cells die off and after you go thru the first hit or two, and after that, it just gets easier and easier to deal with.

No one looks forward to this shite, but the improvements once the healing starts in earnest are cumulative and palpable.

We're all here for you, so dont feel alone or abandoned. Just hang in there. You're going to be OK. You're going to get thru this, and you're going to be monumentally better afterwards.

 

[AndyPandy]

So sorry @HABS93

 

[andyguitar]

You're going to get thru this, and you're going to be monumentally better afterwards.

Yes i'd say you have a lot to look forward to. Strange thing to say maybe, but any lung abnormality can cause fatigue so when the treatment starts to have an effect you might notice a big improvement in your energy levels. The other symptoms you have mentioned could be due to Lymphoma. If they are you should get some improvement in a couple of months. Not everybody has a bad time on Chemo these days so cross your fingers.

 

[Gingergrrl]

Can't imagine how bad this chemo is going to feel.

Have you gotten any details yet re: chemo and/or other treatments? I was curious if Rituximab is being mentioned by your doctor as an option (in conjunction with other things of course). I agree with everyone else that you will feel much better in the long term after treatment and I feel very hopeful for you.

 

[Shoshana]

I feel worse since the diagnosis then before.

Maybe you were very busy trying to distrat yourself from some of the symptoms beforehand, and now that you know for sure, they are "real" , you are noticing them differently.
OR, possibly, some of the symptoms wax and wane, or are getting worse, until you start the treatments.

I am sorry you have to go thru all this, the stress and worries as well as the actual treatment uncertainties,
but we are hear to hear you, and step by step, try to focus on.

@Gingergrrl
He will be getting a biopsy next week, and those results will indicate which treatments, so no details on that yet…. is what a previous post said.

 

[kangaSue]

Keep getting this vertigo sensations when I'm just sitting .

Tough break getting the lymphoma diagnosis. It's of little comfort but at least you know what you're dealing with now and that can be half the battle one.
I would still have something like the Mayo PAVAL panel run though as you can still have a paraneoplastic neurological syndrome with lymphoma, albeit very rare.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4046430/

 

[HABS93]

Tough break getting the lymphoma diagnosis. It's of little comfort but at least you know what you're dealing with now and that can be half the battle one.
I would still have something like the Mayo PAVAL panel run though as you can still have a paraneoplastic neurological syndrome with lymphoma, albeit very rare.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4046430/

Really trying to understand it. Not sure I fully got what they were saying. However, what do I tell my lung specialist ? Would he know about this and is it just a blood test or is it need to be part of my biospy ?

 

[wigglethemouse]

Here is the Mayo PAVAL link.
https://www.mayocliniclabs.com/test-catalog/Overview/83380
This is what the overview says -

Useful For
Serological evaluation of patients who present with a subacute neurological disorder of undetermined etiology, especially those with known risk factors for cancer

Directing a focused search for cancer

Investigating neurological symptoms that appear in the course of, or after, cancer therapy, and are not explainable by metastasis

Differentiating autoimmune neuropathies from neurotoxic effects of chemotherapy

Monitoring the immune response of seropositive patients in the course of cancer therapy

Detecting early evidence of cancer recurrence in previously seropositive patients

Good luck!

 

[Gingergrrl]

Really trying to understand it. Not sure I fully got what they were saying. However, what do I tell my lung specialist ? Would he know about this and is it just a blood test or is it need to be part of my biospy ?

It is just a blood test (that would be sent to Mayo Clinic's lab) and has nothing to do with the biopsy. Your doctor may or may not be aware of it but if he is an oncologist, I cannot imagine that he is not aware of paraneoplastic syndromes (PNS).

It basically means that when someone has unexplained neurological symptoms AND is positive for one of the PNS autoantibodies, that doctors will check for the type of cancer that often correlates with that autoantibody. If cancer is found, than the person has a PNS and if no cancer is found, than the autoantibody is due to autoimmune reasons.

In your case, it is slightly different in that cancer was found (assuming the biopsy confirms this), and you also had neurological symptoms. So if you have one of the PNS autoantibodies, then that explains the Neuro symptoms which could be treated along with the cancer. If you test negative for the autoantibodies, then that rules out a PNS and there is no harm in having that information.

Like Kanga Sue said, if you had small cell lung cancer plus the neurological symptoms, it would be 100% crucial to test for the autoantibodies. It is much less likely with lymphoma but not unheard of and still worth checking it out since it is just a blood test. I hope this made more sense and I would just ask your doctor and see what he or she thinks.

 

[YippeeKi YOW !!]

@HABS93

However, what do I tell my lung specialist ? Would he know about this and is it just a blood test or is it need to be part of my biospy ?

Tell him you've been diagnosed with lymphoma, and ask if there's any chance that the structure he found in your lungs is related. And ask what you should do as the next step in determining what it is, what's causing it, and how to treat it

 

[HABS93]

It is just a blood test (that would be sent to Mayo Clinic's lab) and has nothing to do with the biopsy. Your doctor may or may not be aware of it but if he is an oncologist, I cannot imagine that he is not aware of paraneoplastic syndromes (PNS).

It basically means that when someone has unexplained neurological symptoms AND is positive for one of the PNS autoantibodies, that doctors will check for the type of cancer that often correlates with that autoantibody. If cancer is found, than the person has a PNS and if no cancer is found, than the autoantibody is due to autoimmune reasons.

In your case, it is slightly different in that cancer was found (assuming the biopsy confirms this), and you also had neurological symptoms. So if you have one of the PNS autoantibodies, then that explains the Neuro symptoms which could be treated along with the cancer. If you test negative for the autoantibodies, then that rules out a PNS and there is no harm in having that information.

Like Kanga Sue said, if you had small cell lung cancer plus the neurological symptoms, it would be 100% crucial to test for the autoantibodies. It is much less likely with lymphoma but not unheard of and still worth checking it out since it is just a blood test. I hope this made more sense and I would just ask your doctor and see what he or she thinks.

Thank you so much. I understand alot more . Words cannot describe how amazing the people on this forum are. I wish I could help you guys out the way you help me out.

 

[MTpockets]

Speaking for myself, but every person on this board who keeps on going, day after day...well strength in numbers and all that. Being willing to wake up another day can be an inspiration all in it's self. So keep facing each day, keep fighting for your health, you may never know how many people you may influence just by being willing to exist.

 

[Judee]

So keep facing each day, keep fighting for your health, you may never know how many people you may influence just by being willing to exist.

That's so good. Having an un-day and wondering again where my life went. Thanks for saying this. It helps a lot. You're right and if it helps me I'm sure it helps others too.

Thanks everyone for being willing to exist. Thanks @HABS93, for sharing your fight with us.

 

[Shoshana]

I agree, that was so well said by @MTpockets , and it means a lot to all of us.

Thank you, @HABS93
for what you give us, the strength you show us, and the kind feedback you give us,
and thankyou, @Judee who gives so much to us, as well,
and as MTpockets, said it best.

Thinking of you today, HABS.

 

[Gingergrrl]

Thank you so much. I understand alot more . Words cannot describe how amazing the people on this forum are. I wish I could help you guys out the way you help me out.

I am so glad my second explanation made more sense re: the PAVAL (paraneoplastic panel) from Mayo. It's basically just checking if there is a connection between your neurological symptoms and the cancer. If there is, than they can treat it and if there isn't than it is good info to have ruled out.

I feel exactly the same as you re: the amazingness (is that a word ?) of the people on this forum. Your story will provide hope for so many others who read it down the line in their search for answers.

Speaking for myself, but every person on this board who keeps on going, day after day...well strength in numbers and all that. Being willing to wake up another day can be an inspiration all in it's self. So keep facing each day, keep fighting for your health, you may never know how many people you may influence just by being willing to exist.

Well said @MTpockets and I agree with it all.

 

[Shoshana]

@HABS93
I thought of you this week, and hope that your biopsy procedure this week, at the hospital, went alright for you.

 

[HABS93]

It's been about. Been trying to focus on things I enjoy. Tuesday was to find out my biospy appointment which is this coming Thursday. Then after that treatment to follow. I'm actually scared because my symptom's have been alot worse lately. I tried to drink some beers today only to get a stomach ache -_-