Hello SaraM,

That is indeed excellent news that you have been in complete remission for 3 years!

I am sorry to hear though that since having treatment you have been prone to infections and keep having to take antibiotics. It is an interesting question as to whether the treatment with R-CHOP and Rituximab may have caused it or it is linked to you having had low grade follicular lymphoma or if it is unrelated to either. It might be worth asking your doctor who will I am sure be able to comment on this.

If you live in the UK, our nurses are also available on this free number 0808 800 4040, Monday to Friday from 9am to 5pm so don't hesitate to give them a call and ask them what they think about this.

I hope you will also hear from our members soon and that they will share their own experiences with you.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Sara

I'm pleased to hear your now in remission from I take it non hodgkins Lymphoma!

I would like to inform you that I too am in remission from Lymphoma and finished my course of 6 chemos off RCHOP on March 2016.

I to have found I have a constant chest infection sinse my chemo finished and recently picked up a bug which has intencified my chest infection!

after consulting my GP I had XRays which came back no action needed which I guess means clear chest? my GP suggested not giving me antibiotics as were all becoming immune to their effects with overuse!

I also find I have side effects from my chemo concerning tingly and numb fingers and from my knee down to my feet the same and I now have two badly swollen toes!

I hope you have recovered from your constant chest infection and it would be nice to hear how you are getting on with your remission...Im a 68 year old man!

Regards

BrianM

Hi Brian

Thank you for your reply and sorry to hear you still suffer the side effects of chemo. Yes, I have follicular lymphoma low grade and remain in complete remission, long may that last!

Since I completed 2 rounds of antibiotics given in July 2018 my cough and all symptoms have completely gone, at last!! My GP said I most likely had an upper respitatory infection which remained after the recurrent chest infections which were treated with antibiotics in November 2016.  A very productive cough remained till the next lot of antibiotics in 2018. My chest was also clear when the 2nd lot of antibiotics were given.

I had tingly and numb fingers, this went after about a year. I have also regained the strength in my arms and legs, took several years and feel well and have energy.

Wow, it takes a long time to get over the treatment and cancer !

Keep well

Sara.

Hi Sara

Thanks for your reply to my email glad to hear your in complete remission can I ask do you have the non aggresive form of non hodgkins Lymphoma or the aggresive? I have the aggresive type which is curable with no need to take drugs to keep it contolled unlike the non aggresive!

I'm pleased to hear youve finally cured your chest infection with antibiotics. I will have to push my GP to prescribe me with similar.

as for my tingly fingers and numb calfs and feat guess I will have to be patient and hopefully they will recover as your have :-)

Ive been informed by the Cancer specialists that were all different and recover in different ways.

Keep Well

Regards

Brian

Hi Brian

I have a low grade non-hodgkin lymphoma which is not curable. I am in complete remission but have been told it will return. I see my consultant yearly but could be seen quicker if the cancer became active again.There are many treatments avaialable, I understand the aim is to control it. 

I don't really think about it, but I keep myself as healthy as possible most of the time and enjoy my life.

Regarding the cough / chest infection, I tried to heal it myself for several years. In the end I needed antibiotics anyway, it is bliss to stop coughing and bringing up horrid stuff, I clearly was unable to fight that infection. 

Onwards and upwards!

Sara 

Hello everyone.  First of all pls forgive the length of post.  Last October (2017) was diagnosed with stage 4 Non Hodgkin lymphoma had it in chest , throat, abdomen, liver, spleen and bone marrow DLBCL.  Was treated with 6 RCHOP,  4 METHOTREXATE into the spine by lumbar puncture and 2 full cycles of GDP.  Also had three PICC lines put in also (for some reason they kept coming out!!!).  My mum tragically passed away during the second cycle of GDP.   Anyway was told that I have gone into remission in September 2018 NED since then I have had pains all over in Chest,  Upper Arms, Under arms, legs and neck. As well as tingling in hands and fingers and toes,  is this normal or long term side effects from chemo.  If anyone else has had the same pls tell me how you cope with it.  Or has it relapsed

Hi NHLS4

So sorry to hear that you have been through such an awful time. Just to say that during my R Chop treatment and followup on Rituximab I experienced pain in my arms and legs plus tingling in fingers and toes. All this has gone, it took several years in all. My pain was not severe so I was able to go back to work, restart yoga and walk daily, I tried to avoid pain releif via drugs. I found there was so much to get my head around and at times it was a roller coaster ride, talking helped most of the time.

Perhaps if you are worried you could contact your nurse to talk through your concerns. 

Take gentle care

Sara.

Thanks Sara, what I failed to mention was that i had blood tests in the middle of October and the cancer nurse rang and told me that they all came back perfect my hemaglobin,  platelets,  lymposites, kidneys and liver.  With hindsight it might be just the effects of chemo but worries me is the last time I had chemo was the end of June 2018.  But yes I will be speaking with them again on the Dec 13th.  So take care for now and once again thanks for advice.

hi I am due to start gdp chemotherapy this coming week after6 rounds of RCHOP not completely working for my grey zone lymphoma and I have stumbled across this post and hit panic mode. Please could you tell me how your poor mum passed away during the second round of this chemotherapy?? 

I also hope hope your doing ok x 

Hi GDP is a targeted therapy it is  gemcitibine and platinum it is a lot harder on the system especially the kidneys.  I had two cycles of this regime.  It put into remission but only for six months.  Under a routine PET Scan they found out that it came back again on my spleen chest and left lung.  The only thing for me now is a clinical trial and CART CELL THERAPY.  I hope and pray that you go into remission and stay there permanently.