Treatment

Hi MBFC and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

I was diagnosed way back in 1999 at 43 with a different type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I had a totally different full on treatment plan that initially had me in hospital for 6 days/5 nights on my IV 24/7 for my 6 cycles and yes..... everything does build up and it is easy to not see how you can get through it...... but you will.

I always imagined that if I was feeling rubbish what were my cancer areas feeling like..... and that's what this is all about. Many people find that each cycles can be different so there is a chance that you next cycles may not be as bad........ as your body will be getting used to the treatment.

You are aiming to drink about 2 liters of water every day?........ this actually helps flush the chemo toxins from your body. I had to change my anti-sickness meds a few times over my cycles as my body reacted differently as we went through treatment - keep talking with your team about you being sick as they can change things.

The Fatigue will build but it is very important to keep some regular activity going as the less you actually do the longer your recovery is going to be and the longer the fatigue will last.

You can see in my story below that I walked as much as I could and this helped with the fatigue greatly.

For some the battle between the ears can be hard....... but coming on here will help and you may want to look at Lymphoma Actions regular Support Platforms...... I highly recommend these groups as there is nothing better than 'talking' with other who have walked the journey. They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to chat.

I was very sick on bendamustine too. I was eventually given a really strong anti sickness drug which stopped the vomiting if not the nausea. So do tell them that you are still being sick because they do have more drugs they can give you. Don't suffer in silence. Apart from that, you will get through it even though you can't see it now. Be kind to yourself.

So sorry to hear this. Our struggle, our journey has been called a war, and while not entirely comforting, that is precisely what it is. In war, the first battle is often the most difficult. That shock strikes one most abruptly. Subsequent battles are gauged against that first and often seem far less severe. Bear in mind that we are adaptable creatures and that we can "roll with the punches" or even learn to avoid them if at all possible. I would urge you to keep your ultimate goal in mind at all times. What we experience must be viewed in light of what will happen of we cease fighting. Now that will not be at all pleasant. We are given the unwilling choice of extremely unpleasant, or far worse. In that light, the unpleasantness might be more tolerable.

There are common drugs, specifically Ativan (Lorazepam - helps with anxiety) and Zofran (Ondansetron), which is an anti-nausea drug. I found that I did not need the Ativan at all, but I absolutely depended on the Zofran. I would take it preemptively so that my system would be "pre-loaded" with anti-nausea drug before infusion time came. Post-infusion, if I felt even the slightest hint of nausea, I would pop a tablet beneath my tongue and within 5 minutes, the nausea was gone. As well, when I felt the burping sensation begin, I found that thumping stoutly on my sternum helped. It apparently broke up the gas bubbles in my stomach. One nurse thought I was daft, but in almost 15 years of steady treatment, I have suffered emesis (vomiting) on exactly 4 occasions. Not a record, but prevention is key. 

Do speak with doctor or nurse regarding your anxiety, as that can produce nausea by itself - setting the chemotherapy aside! Prevention, if at all possible, is key. 

Thank you all for your responses, all of which make perfect sense to me.  It's reassuring to know that others have had to deal with the same problems.