Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Living with chemo, some advice please.

DaveT88
Posted by

Morning All,

I have just joined the forum so please bear with me.

I am starting the first of six sessions of chemo on Thursday to deal with Follicular Lymphoma (FL.)

The information that I have seen deals with cleaning the loo thoroughly after use as the drugs can stay in your system for 7 days.

However, I cannot find advice about washing clothes - do they get washed separately?

One of the symptoms of FL is night sweats. The drugs will be in my sweat. How harmful is this to my wife as we share the same bed?

Thank you in advance for your advice & answers.

Dave

Thehighlander
Posted by

Hi Dave  and welcome to the Online Community but always sorry to see folks finding us.

So to answer you washing cloths question. It makes no difference, just throw everything in the washing machine as normal.

Yes, the one thing to look out for is when you are using the toilet. Always double flush the loo and use a antibacterial wipe after doing your business. If you are posh and have two toilets assign one for you and the other for the rest of the family.

The toxins released by the chemo will pass through your body and out in your urine so watch out for that for a few days post treatment. It is very important that you drink lots of water during your treatment as this helps flush your system and looks after your kidneys.

The sweat is not a problem.

What is the name of your chemo you are getting?

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

We are around to help out so keep posting your thoughts or questions.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

BedrockFred
Posted by

Hi and welcome I have just had my 3rd cycle of Chemo to deal with FL like you I'm having 6 cycles (R-CHOP) and for me it's going well I have the bad days after the treatment but they seem to be getting more bearable with each cycle, when the 6 cycles are done I will be on a 2 year maintenance program which consists of bi monthly injections

I am also lucky I have a great hospital team helping me through this they have been brilliant both the Doctors and Nurses and support from McMillan, the Nurses are under stress everyday but keep smiling and supporting and I can ask the Doctors anything and they will answer all my concerns honestly  hopefully you can do the same with your concerns 

As for your concerns re washing cloths we wash our cloths together it's not caused any problems and I don't/have not suffered from night sweats at all I share the same bed as my wife and it's given us no problems 

The biggest thing I find that helps me through is drinking plenty of water,squashes, decaf tea and coffee I aim to drink at least 3ltrs a day to help flush my body through 

Just keep your personal hygiene good and I'm sure things will be fine

Together we are stronger
DaveT88
Posted by

Hi Mike,

Thank you for your post & useful information.

We are a one toilet family so will be very careful with the loo protocol.

I have also added some information to my profile.

My first chemo session, consisting of Rituximab and Bendamustine, is this Thursday & Friday.

Best wishes,

Dave

DaveT88
Posted by

Hello,

Thank you for sharing the details of your treatment and advice.

Like you, I already drink lots of fluid every day. I have even got to like Green Tea which is apparently good for you. 

I have recently changed my diet too by trying to have vegetarian options when available. It just feels better for my digestive system. I also did it from an animal welfare point of view.

Totally agree about how good the medical team has been. They do a fantastic job in challenging conditions.

I hope that your treatment plan is successful.

Best wishes,

Dave

Jenko1979
Posted by

Hi Dave,

i have just completed my last cycle of bendamustine + Obinutuzumab (which is similar to rituximab) so hopefully I can give you some advice.

i found drinking lots of water helpful and actually I didn’t really feel like drinking anything else for at least a week after treatment anyway.

i added 1 piece of morning fruit into my diet and ate much more oranges throughout the day. Constipation was a big side effect for me and the oranges and bran flakes helped with that.

the bendamustine is the one that gave me side effects. Worst days for me were days 3-6. Normally, my appetite went down during days 3-6 so I are a lot of soup.

fatigue got slightly worse as each cycle went by, but treatment was by no means as bad as I was expecting. Even yesterday I managed to cycle 10km without any issues and that is a week after my cycle 6.

i would say I easily had more good days than bad days throughout the whole 5 months.

Hope this helps

Paul 

blocks
Posted by

Hi Dave,

I am slightly ahead of you as I started cycle 2 of Rituximab and Bendamustine last Wednesday and Thursday for follicular lymphoma. With regards to your questions, we have not taken any special consideration with regards to use of toilet or clothes washing. I am staying at home most of the time to avoid infection but trying to go out for a walk once per day. 

After cycle 1 I felt ok for about 2 days and then it really hit me and I was feeling rough for 3-4 days - tiredness, headaches, feeling sick/cramping stomach, slight temperature and constipation. The weirdest thing I had was itchy ankles caused by dry skin. I returned to work although I worked from home for 2.5 weeks before the start of cycle 2.

After cycle 2 I was feeling unwell with a couple of hours of coming home and ended up in hospital due to a high temperature and uncontrollable shivering and I also vomited a couple of times that evening. In hospital I was given paracetamol, antibiotics, IV fluids and lots of blood tests, x-rays, etc but they found nothing wrong with me and kept me in until 4pm the next day. It was attributed to a reaction to the chemotherapy. I have now been taking paracetamol for a few days and will probably do that after each cycle from now on.

I have had a rough few days which had similar symptoms to cycle 1 except that this time on Saturday evening I seemed to lose the coating of my tongue and the roof of my mouth which was uncomfortable for a day or so. I have also had itchy feet as well as ankles this time. I am now starting to feel better 1 week after I started and I should be able to return to work soon.

All the best,

Allan

Allan
DaveT88
Posted by

Hi Allan,

Thank you for the advice about house keeping.

I am a bit of a hermit so don't like going out much, especially when the weather is miserable.

Sorry to hear that you have had and are having such a tough time of it.

It's not as if we have much else to worry about is it?

I am hoping the chemo side effects settle down for you and it does what it is supposed to.

Best wishes,

Dave

blocks
Posted by

Hi Dave,

I didn't mean to be overly negative in my reply. I should have said that I had 4 enlarged lymph nodes on my neck, one of which was quite large under my jaw line and 1 week after cycle 1 all the lumps had disappeared which amazed me. So I definitely know that the treatment is working.

All the best for your treatment starting tomorrow, I hope it is kind to you.

Allan

Allan
Thehighlander
Posted by

Good evening Dave and Allan. It can not be overestimated how effective and quick the treatment can be. My brick sized growth on the left of my neck (215x100x65mm) was rather!!! visible, we kept a picture record everyday of it going down and it was rather fast.

The side effects are actually not that surprising but fortunately not everyone has them and it presents in such a diverse way. The worst reactions I had was not due to the chemo but all the antihistamines I had to have.

A good friend came to visit me during my first treatment, she was a hospital pharmacist and just a few hours before had been making up my chemo bags.

She said that when they work with the products it’s all done in special airtight glass box using secure access gloves so they never ever come in contact with the chemo..... “then we put it up to the ward and the stuff is put into our blood.......amazing stuff our educated bleach”

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Thanks for the posting about chemo experiences.  I'm waiting to start my first treatment and I can't seem to learn enough.  I think I'm not able to have bendomustine and can only have the older RCVP mix. I don't know why this is - probably my age (68).

I've had a lot of time to read and think because non'-symptomatic follicular lymphoma usually takes ages to confirm - nearly 7 months for mine.  But knowing isn't understanding and real experiences are so valuable.

Thehighlander
Posted by

Hi and welcome to this corner of the Online Community.

As you will see each journey is so different even on the same treatment and yes, treatments are very specific to your age, how your condition is actually presenting and other underlying illnesses.

You will see from my profile (hit my Forum name) my condition had become very aggressive rather quickly so it had to be hit very hard to get me into a position of going into Stem Cell Transplant. My cycles were 120+ hours continual chemo so 5 days in hospital but I had no reactions apart from the antihistamine issues. Yes some sickness issues but a change of meds fixed this and the fatigue by the end was rather bad made worse by a further month in having my Stem Cell Transplant.

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

All the best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

DaveT88
Posted by

Hi Paul,

Glad to hear that you are at the end of the treatment.

The information thaf you have provided is both very helpful and reassuring.

I will follow the more fruit advice.

I already drink loads of water and have started having green tea which actually tastes quite nice.

Very impressed with the 10k cycle so soon afterwards.

Best wishes,

Dave

DaveT88
Posted by

Hi Allan,

Not to worry.

I do not have any external swollen lymph nodes. That would have made the biopsy too easy.

There is a 9cm mass in the lining of my stomach (mesentery). I also have bits in my lungs, above & below my diaphragm and left side of my neck. They managed to get the biopsy from a lymph node in my stomach albeit entering from my back. I did not see the 14cm needle as I was laying on my front. Thankfully, I did not feel a thing during the procedure due to wonderful local anaesthetic.

I knew about the growth from the CT scan. The PET scan showed the other bits and I was quite concerned.

Hopefully, the chemo will do the trick & shrink them.

Best wishes,

Dave

DaveT88
Posted by

That's good to hear how effective it was Mike.

Very interesting to hear how the cocktail is mixed. I love the term, 'educated bleach'.

May your recovery continue.

Best wishes,

Dave.