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Good Morning
I don’t post here often and I’m sorry to be doing so now, but I don’t know where to turn or who to talk to.
I was diagnosed with Non Hodgkins Lymphoma a few months ago and started chemo treatments in August.
I receive 2 treatments on Monday and one treatment on Tuesday. I feel pretty good those days, but by Wednesday afternoon, I am really starting to feel lousy. Anyone I had talked to, who has had chemo, tells me that they felt lousy, nauseous etc., but no one ever said how horrible they felt. I, actually, felt like I was going to die and I cannot express, in words, what it was exactly I was feeling. I felt like my body was vibrating and nauseous but no pain. Constipation was an issue for me the first session and I ended up in the ER twice, but I think I’ve got a handle on that now.
I am on Bendamustine and riTuximab. I was scheduled for 6 treatments…4 weeks apart. After that, immunotherapy every 3 months for another 2 years. It is not curable, but they are hoping to put it in remission.
I cannot believe how tired I am. Nausea isn’t too bad, but the overall tiredness is difficult. I am suppose to get 30 minutes of exercise, but just walking through the house (small townhouse) exhausts me.
Has anyone gone through this? Is this unusual? When I questioned a friend, regarding her symptoms, she told me she downplayed it because she didn’t want to scare me.
Was I naive thinking I could breeze through this? I am scared and not sure I can continue treatment. Am I just being a wussy?
Any help or suggestions would be greatly appreciated.
Thank you.

Not something I've personally dealt with, but sending you strength and healing thoughts (((devastated30)))
You will beat this

No personal experience but a neighbor went through similar. We know how strong you are (you survived infidelity!), so those internal resources will help you now. I wish I had advice other than know that we are rooting for you!!! (You might look for a group on Facebook — there are groups for everything and you will probably find others in similar conditions to help you.)

No personal experience but sending positive thoughts and ((virtual hugs))

Oh devasted30, I'm so sorry you're going through this.

Sending hugs.

I am so sorry you are going through this. Is there someone on staff where you get treatment that you can ask about ideas, such as a Nutritionist or counselor that maybe has worked with others and seen what has worked?

While not the same, I just finished a radiation protocol for breast cancer two weeks ago. People kept telling me how the side effects would peak at two weeks after my last treatment. I sort of didn't understand it or believe it. I thought to myself, "I'm done with radiation being shot into my body now; I'll be back to myself starting tomorrow." But I wasn't. In fact, I had minimal skin redness going into my last session, so barely some discomfort. And now I'm feeling some of the zapping and zinging feelings that indicate the nerves have been irritated... 2+ weeks later.

So trust that your medical team has the answers to your questions. Certainly you must have a nurse coordinator or patient portal where you can reach your physician. Instead of asking random people on the internet what is 'normal' for you to be feeling, you need to communicate with the team who does this every day.

On the days that I had 'fatigue', I tried to limit my responsibilities or obligations. But it wasn't until my psychiatrist/therapist told me last week about the peak of side effects would hit at two weeks, did I internalize what everyone had been telling me all along. So don't underestimate how your protocol might be causing your issues. And definitely reach out to your health care team.

I'm so sorry you are going through this. And no, you are NOT being a wussy!

Thank you for your responses. They all helped tremendously. I did reach out for help from the Cancer Society and they’ve hooked me up with a social worker and a nutritionist. Also, FB does have several Lymphoma groups and that’s helped a lot as well. Plus, the social worker set me up with a blood cancer group and they are going to get someone to talk to me who has been on the same protocol so I can hear about their experience and possibly share some insights with me.

I am very lucky in many ways. The support of family and friends has made such a huge difference in this experience.

Thank you all for reaching out. I really appreciate it.

[This message edited by devasted30 at 3:14 AM, Wednesday, October 18th]

I, actually, felt like I was going to die and I cannot express, in words, what it was exactly I was feeling. I felt like my body was vibrating and nauseous but no pain.

Do you get IV steroid prior to infusions? Or even oral steroids? This sounds a lot like steroid side effects.

tushnurse
Yes, I did take oral steroids both days of treatment. Obviously, this could explain why I felt so bad? Wow, I wonder why no one explained that to me. Luckily, it doesn’t seem to be happening as badly this time. Thanks You.

I figured. They give steroids routinely with most chemo now. Let your dr know you had a hard down from coming off. They can slow the wean off so you don't crash so badly.

Sorry - no experience with your chemo but was wondering:

After that, immunotherapy every 3 months for another 2 years.

Do you know what immunotherapy you are going to receive. My SO starts immunotherapy tomorrow (Petscan today), so I will be able to speak to that shortly.

Sending you healthy vibes!!!

No, sorry. I have no clue what the immunotherapy will be. All I know is once every 3 months for 2 years. I spoke to a lady yesterday who had the same cancer and treatment as me, but it was 6years ago. She had the immunotherapy but said it was just a needle and she was tired for a couple of days afterwards. Unfortunately, she had no recollection of what the drug was. I can’t wait to get to that stage where I do not remember what poison they put in me. Oh happy day!!!

Thank you. I have been reading up like crazy but there is just sooo much information out there (legit and bogus).

His Petscan results were delayed so we go today now. Fingers crossed.

Even Keel…..can you tell me now what the Maintenance program looks like?

Even Keel…..can you tell me now what the Maintenance program looks like?

Well it did not go 100% as planned (but what does )

SO was to start his immunotherapy via IV and do an oral chemo as well.

Based on the Petscan, they have altered that. He is getting the immunotherapy only (every 3 weeks) and they will do another scan in a few months.

This decision was due to two nodules in his lungs now (versus just the one just two months ago). Neither nodule 'lit up' on the Petscan (which is supposed to be a good sign).

So the oncologist wants to do just the immuno and then rescan. He said if those nodules reduce or go away, then we know it is cancer and he will add the oral chemo to the treatment plan.

If there is no change in those nodules, then the assumption is they are not the metastasized cancer and keep treatment to just immunotherapy only (for one year).

So he has one immunotherapy treatment done so far, 16 to go!

As for side effects so far, they have been very minimum to none. He has bouts of tireness but nothing that keeps him from his normal day to day (ie work, etc). He is lucky (?) to be self employed so if he is too tired, he has the ability to take a nap at lunchtime then go back to work.

He has body aches BUT it is getting cold here so each year at this time his arthritis acts up so we really can't tell if it is the normal "omg - I can't take this cold" or if this is from the immunotherapy.

Please do not hesitate to reach out to me if you have any questions or just need an ear. ALSO, we found a FB site for SO's type of cancer that has been very good for just finding folks in the same boat as you and hearing about their treatments, outcomes, experiences. If you have not sought one out, you might want to search for it as another resource.

Again, do not hesitate if you need me!!!! So is very new to this as well (found out end of July) and it has been such a whirlwind!!!