I've been there.....twice

[jack23]

Hi, I am definitely new to this type of contact, but not new to NHL. First diagnosed with large cell in 2000 (took 6 round chemo treatment) Recurrence in 2009 with follicular type NHL. Had surgery then but no chemo. On the 'watch and wait' regime. Get good reports at the cancer clinic, but never feel particularly well.Recently diagnosed with adult onset asthma but the health care professionals cannot agree on this for sure. Have received many 'mixed messages.' Grateful to still be alive however!

[Shar0n Volunteer]

Hi jack123, welcome to NHL Friends. I also have follicular NHL but am still on watch and wait (3 years). I can't comment on whether people feel well having gone through a chemo regime but I'm sure someone with experience will chime in. I find that I have to harness my energy better than before but that may be age (62).

You did well after chemo with no recurrence for nine years and to be still on watch and wait since 2009.That will give a lot of hope to others who are at the beginning of the journey.

Have you made many/any lifestyle changes since diagnosis eg food /exercise?

Despite the bit of tiredness, I believe I'm fitter than ever due to weight loss and exercise, but I can't say whether this has contributed to the slow progression of the lymphoma or not. Continued remission to you anyway - that's what we all hope for.

[Josie2rulrs in reply to Shar0n]

How does exercise help?

[Shar0n Volunteer in reply to Josie2rulrs]

Hi Josie2rulrs, I think exercise can help by giving me a feeling of wellbeing and a small sense of achievement in finding out that I can still do things that I thought were behind me like swimming for a couple of hours every week, which I had enjoyed when I was a child but had given up as I got older.

Also, I know that using our muscles - even when walking around helps to keep the lymph moving instead of sitting in the lymph nodes and stagnating.

[Josie2rulrs in reply to Shar0n]

thank you so best to keep these moving...

[laylalulu]

I too am on watch and wait, it'll be three years next week I was diagnosed with marginal zone lymphoma. I don't think the worry ever leaves us. I too am experiencing breathing problems which I thought was related to the lymphoma. However tests or ct scan showed nothing going on, bonus! I didn't feel 100% the past year I think it was just worrying for nothing. I've decided since my yearly checkup to try my best to put it out of my mind until something happens and it may not for years or not at all. I keep busy and push the cancer thoughts to the far back in my mind. I have started eating healthier and running a bit. It all helps to do the best we can with our health, and be proactive. I hadn't had a catscan since I was diagnosed and I asked my GP if I could get one, that I was anxious, my breathing wasn't right and my neck was feeling weird.. so he did send me for one which took a load off my mind. All was good 😊

[BelindaTupper]

Keep pressing your medical team, or family doctor, to test for whatever is making you feel unwell. Ive heard adult onset asthma can be terribly hard on you. You could have some other underlying health issues, too, so I'd keep pressing on. Stay positive.

[jack23]

Thanks for taking the time to reply. It seems as though many on this site have been through so much more than I have. I have found that with each specialty chiming in, there can be no one who really puts it all together. Discouraging when there seems to be one thing after another. Staying positive is easier some days than others, so important though.

[R16728]

Hi Jack, Dave here. I'm not unlike you. Had my first chemo in 2008 but have healed and moved on. Now on trial drug, Zydelig. How did your asthma emerge? I've had an upper respiratory issue for 6 weeks and wonder?

[jack23]

Thanks for the reply. I wonder if folks like us fly just under the radar??I have had no major issues to speak of, but many and varied minor problems for which there seems to be no answers. Given the nature of our particular type of cancer perhaps it is no wonder that one's immune system struggles to fend off things that 'healthy' people (those never having had cancer) get, and then get over. I think ,at least for me, that it is a sign that my immune system cannot quite keep up, yet my labs are always fine. I had what was labelled bronchitis last winter and what was called pneumonia this past spring, but nothing was definite. My pulmonary function tests suggested asthma, but the asthma meds did not seem to be particularly helpful. My hematologist/oncologist and an allergist/immunologist both said "this does not present like asthma". Difficult to get mixed messages from health care professionals. Bottom line....I still cough a lot and produce a lot of phlegm.This has been going on for a long time, but according to the cancer clinic, this has nothing to do from their end.And so the journey continues...

Why are you on a trial drug?? How are you finding it?? this has been a little message from someone who cares, Jackie

[Dlindquist54 in reply to jack23]

I was getting respiratory illness regularly before and after chemo. I started essiac/ezzaec for an immunity bump. It's an herbal tea remedy. When I've run out I have gotten sick. Sometimes it feels like allergies? Never used to have allergies. Think I have a spot of fibrosis on ling from chemo drug. Said it won t get worse if it's from that.

[oncloudnine]

Hi Jack, I have Primary Mediastinal LBCL. Diagnosed 1/2016, currentky in remission for 6 months now. I had 6 rounds of R-Chop chemo, and 20 radiation treatments. Had several infections in 2016 because my WBC count would get as low as 0.4, which put me in reverse isolation. I spent a total of 3 1/2 months in the hospital, and what seemed like endless trips to the Emergency room. I have neuropathy in both feet caused by the chemo. 2016 was pretty much my year in hell. I just had blood drawn earlier today, and the results I am praying, show that I am still in remission. I think never feeling particularly well goes with NHL and the God awful treatments. I, like you am grateful to still be alive. I wish you the best of luck and continued remission.