Did you feel ill before diagnosis and how long did it take I am so unwell

[diww1]

I haven’t been diagnosed with lymphoma but have many symptoms and am very unwell it’s so hard living with my symptoms for about two years and still not know ..

[Skooka]

I wish I could help diww1! I have been in the same boat for the same amount of time. I've had two lymph node biopsies( one was a very enlarged left supraclavicular node, but my doctor refused to have them stained or tested past the couple of tests my small, rural lab would do, then fired me as a patient for crying about it in her office. Since then I've gotten a growth in my anterior mediastinum and one in my spleen that have also been brushed off. I have drenching night sweats every time I fall asleep for a moment and cannot make it across a room without being winded. I'm also now on permanent steroid medication since my adrenal glands and pituitary have stopped communicating, and anemia even iron transfusions won't correct. All of my symptoms started after I was put on Humira injections and lymphoma is listed under the warnings. Sadly now not a single doctor will listen to me after the one fired me as soon as records come.

What are your symptoms?

[diww1 in reply to Skooka]

I am so very sorry to hear about what you’re going through can you ask for a second opinion or even change doctors if you feel it would help .. they need to give you a satisfactory explanation for all you’ve experienced and still are experiencing I really feel for you and hope you get answers soon x

[diww1 in reply to Skooka]

I have had and have other illnesses that increase the risk of lymphoma .. in 2017 on one day I woke up and had 96 hot flushes with full body sweats night and day .. I never had one in my menapause or any day before .. also my ferritin shot up from 20 to 581 within 8 months of these 24/7 hot flushes and sweats .. I can’t take any meds for them because of other conditions and meds .. I’ve got fans on most of the time and had them installed on ceilings in living room and bedroom and use strong hand fans, i now have low grade fevers and such exhaustion .. they can’t find any nodes up in my neck .. but not had anywhere else checked as yet.

it’s not hemotomacrosis I’ve had that checked

I have a fatty liver which can cause high ferritin but to jump from 20 to 581 when I was intentionally losing weight and after sweats began is very odd

I am concerned as it’s nearly two years of these sweats and no answers yet

My haematologist is brilliant so I am leaving it to her expertises

An endocrinologist looked for other reasons and as I didn’t have them he said post menopausal sweats but it’s not .. I didn’t have any at all in menopause and woke up on 1 Dec 2017 and had 96

They are day and night between every 15 .. 20 .. 25 .. 30 and 45 mins apart

After nearly two years I am exhausted. I also have other serious conditions but they don’t cause hot flushes

[Russ70 in reply to diww1]

Have you had a cat scan to see if there are any other nodes. There are a lot of lymphnodes in every part of the body.

[diww1 in reply to Russ70]

No but I wish they’d do one

I’ve had a few CTs last year for another reason but they weren’t looking for lymphoma with those two but I was told they were ok. But I do feel as they were done for a bowel bleed I need one specifically to look for cancers

[Russ70 in reply to diww1]

Don't ask or wish. Tell them you want one.

[diww1 in reply to Russ70]

Yes I know I should I usually do .. I think they may do they are dealing with it now

[Skooka in reply to diww1]

I understand your frustration completely! I'm glad to hear that you have a hematologist that will listen. Mine said ver batum "We don't diagnose lymphoma, we only treat it". Personally, with my husband's help, I've tried to see several doctors and they ALL just refer me back to another doc, I've seen or say they cannot help and dismiss me. On top of the growths in my spleen and mediastinum and several other enlarged lymph nodes, I also have several ulcers that they can find no reason for. No h. Pylori, no NSAIDS, NADA, but that has been dismissed too by my GI doc that also found the spleen mass on MRI, but said he's not worried. No one is worried except me and everyone that has seen my health deteriorate. They are all just interested that I haven't lost a huge amount of weight, even though I'm on chronic steroids now and have hypothyroidism and PCOS, yet have every other symptom from the sweats that have me changing clothing and having to get help washing blankets and pillows several times a day, even odd ones such as petichea on most of my body, cyclical fevers and losing the vision in my right eye. Lymphoma even runs in my family and is more common with the Ankylosing Spondylitis and other autoimmune conditions that I have. I don't want this condition, as no one would, but ruling it out would be superb.

I honestly feel like I've been living in the Twilight zone with all of these growths popping up, bloodwork never quite right and two surgeries to remove lymph nodes ( My supraclavicular node surgery was supposed to take 45 minutes, but ended up taking close to six hours because it was way more complicated than expected) THEN they were never tested properly. My husband and I called around and begged for weeks for a second opinion and my little hospital finally agreed to send lymph node samples to Memorial Sloan Kettering, after I read that they are great at what they do, just for this little lab to send them the two already stained slides that they've done, and MSK could not run their own testing...effectively using up my second opinion.

I really hope that you get answers that has a treatable, favorable outcome. It literally breaks my heart to think of someone else going through this heck. Before I had to go on disability due to complications from my Ankylosing Spondylitis and getting really ill from the Humira, I was a nurse and absolutely know that I'm not crazy as they are still trying to tell me that I am, and you don't sound unreasonable to me either.

Every single doc that I see, even the hematology doc thinks that since I'm not emaciated, that lymphoma is not possible, even though all of my imaging and constitutional symptoms are not in the least "normal"

I hope you keep us updated, and I hope the news is good. 😊

[diww1 in reply to Skooka]

I really feel for you so much .. I too have other illnesses and high risk factors and many symptoms

But like you I've not lost weight but I don't thing everyone does or at least not at first in all cases

So who diagnoses it if a hematologist doesn't .. ?

Surely a hematologist does assist in the diagnosis

X

[Russ70]

You need to go to a Hematologist so they can see if the symptoms are lymphoma or not. A regular doctor may not catch the signs. I had a lump under my armpit and groin when I asked doctor to be referred. I was diagnosed with FNHL April 2018. I didn't feel unwell or have felt unwell since diagnosis, but it's different for everyone.

[diww1 in reply to Russ70]

Hi I hope all goes well for you .. I am under my haematologist have been for 12 years for another reason .. she’s doing all she can to find out what’s going on ..

[diww1 in reply to Russ70]

I hope you’re doing ok and treatments ok for you

[Russ70 in reply to diww1]

Thanks. Not on any treatment, just 6 monthly checkups and bloodwork. No symptoms apart from the nodes. It's called watch and wait.

[diww1 in reply to Russ70]

I hope it’s ok at your next check up and you don’t need treatment for a long long long time

[Shar0n Volunteer in reply to Russ70]

My GP was "not concerned" about the swollen node in my neck. I asked my dentist to check for dental issues and he found nothing but referred me to a maxillo facial surgeon who removed the node for biopsy and it turned out to be FNHL. I had no other symptoms at the time. You have to be your own advocate when you know something is not right.

[diww1 in reply to Shar0n]

How are you doing .. I really hope they can sort yours out for you .. I wonder why GP wasn't concerned .. I did have similar last week a hard pea size lump came up on jaw I went to GP who said you need to see your dentist .. dentist said your Saliva glands are blocked .. referred me to maxillo facial I saw them about another issue a few days after seeing dentist and mentioned it they felt the glands in my neck and said nothing about my saliva glands the lumps gone under jaw so it can't of been anything. It's a concern howany people seem to have a fight to get help

[Shar0n Volunteer in reply to diww1]

I'm still on watch and wait after five years. The form of lymphoma that I was diagnosed with is slow growing. When you are diagnosed with one of these indolent lymphomas they don't always require immediate treatment - even for a long time.

Treatment is only required if and when the lymphoma progresses and the patient is getting symptoms such as night sweats, pain and swollen nodes around the body.

Also blood tests and scans can show if the disease is becoming more aggressive. It's only possible to diagnose very early if a node is removed by surgery and biopsied. Hopefully it will turn out that you don't have a lymphoma but alert your doctor to any new symptoms and maybe ask for blood tests. Good luck and let us know how you get on.