Lower back pain

Natasha,

Side-effects worsening the farther along you go in treatment is pretty much the norm. More poisioning of cells, more discomfort.  Some people have few problems all the way through, but this varies dramatically with the number of total cycles they receive (less treatment, fewer side-effects !).  Age of the patient and the severity of the cancer are also factors. That is, older patients tend to feel worse than younger patients; sicker patients tend to feel worse than less sick ppatients.  All of this is pretty intuitive, actually.   Even I, after two treatments with r-abvd, felt OK and went back to work for about two weeks, until the bottom fell out.  Beyond that point, however, the only place I went was to bed  ! I slept about 17 or more hours per day.

What you are presently describling sounds a lot what is called "Flu-Like Syndrome."  It is quite commonly caused by several of the regular drugs used against lymphoma (in r-abvd, for instance, three of the drugs commonly cause this feeling).  The only treatment is rest and pain medication. Only Loritab worked for me.

If I have not sent you this link previously, it describes what I am speaking of. I hope you feel better soon.  My doc had a perscription for Loritab ready in the pile when I first met him.  He told my wife and I, "Take as much as you need. During chemo is not the time to be a super-hero. Rest and let yourself heal."

RITUXAN is especially notorious for Flulike Syndrom, if you are receiving it (sorry, I don't recall if you are).  The article mentions fever, but my pain (which was more-or-less constant for about five months) usually had no fever accompanying it.

http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx#.VBh2vaQg_

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Lifeisbeautiful said:

Thank you!

Thank you for the information and link, Max and thank you Grace for the encouraging words.

I read allot also but it's different when real people tell you if they went through something like this as well. I have to be happy that until now my side effects weren't too bad so feeling the way I felt for the last couple of days made it even more real. Chemo is not a joke! It is hard but I'm almost half way through. After next Tuesday (chemo#6) I have 3 more months to go and hopefully this will be the end of suffering. I've been in pain for way too long now (since I got pregnant last year). I rest and sleep when I can and enjoy the good days when they come.

I'm not taking Rituxan and I will ask my doctor about Loritab or if there is anything stronger than Teylenol to help with pain. I know now that the pain will only get worse with more chemo treatments.

Natasha

N,

I guess there is no "normal" in chemo, really. There is a broad spectrum of side effects, which are listed for each drug, but which ones (if any) a given patient will get is anyone's guess, until they are in treatment.  You are in for the "long haul" (12 infusions), which is one of the criteria for a rough road, although even a lot of cycles does not ensure than chemo will be difficult for someone. Please note: I did not say your muscle pain would get worse, just that it is quite possible and common.  Discuss pain meds in detail with your doc is what I would suggest, although, as I wrote, my doc handed me a perscription for Loritab when we first met, before we discussed anything, so it must be a pretty standard thing for some doctors, at least when dealing with certain meds.

A neighbor near my last house (we moved  across town three years ago) had a severe case of NHL around six years ago, and went on some combination that required that he go in the hospital for infusions, and then stay for a few days thereafter. When home, he was unable to get out of bed. ANY. At any point in his cycle. I have related his story here a few times in the past, so my apologies to all who have heard this account of him before.

My wife and I thought that he had died (we did not really know them well at the time) until I saw his room-mate carrying him to the car one morning to take to the hospital.  He was stunning. From around 300 pounds he had dropped to perhaps 140 pounds, almost unable to hold his head up or to speak. I told him once, months after his treatments ended that I had walked over to his house a few times and knocked, but got no answer. He told me that he had seen me, but was too weak to move or respond.  But others sail through treatment, never quit work, sail around the world, run in olympics, or whatever. It is more or less the luck of the draw, apparantly.

What I was thankful for was remission. My side-effects (in the way I think, some people view things differently) were nothng to pay for gaining wellness.  How many never get there ?  It is not the norm to not reach remission with most lymphomas, but not uncommon either.  Some do not get well.  We have so many now fighting their second or third round in this battle for life.   I myself have a prostate biopsy scheduled for a few weeks from now; the urologist says it is "clinically necessary."  I went YESTERDAY for CT results regarding a spot in the base of one lung. The doc says it has not changed any, and most likely is benign, but must be followed for another year. 

Prostate cancer is wholly unrelated to lymphoma, but still a terrible ordeal. I have buried two friends with prostate cancer in the last eight years.  One of them, Gary, died on Sept 23 of last year, so his first anniversary of passing is in a few days.  Gary lived 13 years with the disease, the other frind lived 12, so it is an extremely slow-moving disease. Even people diagnosed with advanced Stage 4 disease live an average of five years or so. Organ cancers are radically different from lymphoma.  I may get lucky and come out negative, but I know what "you've got cancer" sounds like, very very well.

I'm very glad that you are half-way finished.  Health and vitality are on the way to you !  You are smart, well-informed, and have a great spirit, so you are way ahead in this game,

max

I too had the lower back pain,don't be too alarmed  it is probably actually coming from the pelvis area where your blood cells are regenerating...It was more bothersome as I got more treatments,laying around in bed doesn't help with the pain. So if you are laying around alot, try to get up and move as much as you can tolerate. Gotta get those new platelets circulating around.

Wishing you the best

XXXOOO

Carie

Lifeisbeautiful said:

Good luck!

Max,

I really really hope the CT results are good and you can continue enjoying your cancer-free life. Keep us up to date, please.

I used to think of myself as weak and not able to deal with difficult situations until 5 years ago I decided to leave my ex-boyfriend. Things went very bad after. He went crazy and brock into the apartment I was renting at the time. He destroyed and vandalised absolutely everything! It was worse than you would see it in a movie. I had no more clothes (they were all cut into pieces), my matrass looked like an open flower, the new TV was stubbed with a knife, all my appliance cords were cut.... It was a nightmare and then there was this fear of him wanting to hurt me, the pain of feeling betrayed and the trust broken. I cried every day and night for months and months until one day I decided to face him and forgive him so I can finally move on. I was able to finally calm down and then I met my husband. He was able to put me back together and made me trust and love again. It wasn't easy but I did it. Then in April of 2011 just by pure accident I find out I have type 2 diabetes. I was devastated at first and then I learned to live with it. And then you already know the story, I found out I have cancer while pregnant but the news didn't break me, it only made me stronger and even more optimistic. Just like you Max, I'm ready to go through more pain, discomfort and whatever there's to come just so the outcome is the one I want : cancer-free! I'm grateful for everything I have and the only thing missing is my health but that's going to change soon and I'm so looking forward to that day. 

Natasha 

P.S. Just curious, did your neighbor get better after? How is he doing today?

Natasha,

My neighbor from several years back (discussed above) went into full remission, and has been in full remission since. He was about 33 when his ordeal began, and is about 40 now. He did have a few problems subsequent to remission, however. Within a year he got a terrible case of shingles, which is not too uncommon with lymphoma, for some reason.  There have been discussions here in the past about whether to get a shingles vaccine or not. My oncologist and his group does recommend them. As I said, opinions differ among doctors on that subject, however.

Two years after that, he had to have both hips replaced (in his 30s, as I noted).  The doctors told him that his chemo had killed the blood supply to his hips, and they essentially crumbled. Very odd, and not anythiing I have read here before.  I have asked him what his treatment was, but he does not remember.  He has also regained virtually all of his weight (he is about 6'5", but was quite obese at about 300 pre-cancer; I would guess hiim at about 260-275 today).

Since I moved three years ago, my new next door neighbor has also had Stage 3 NHL. (His story is below, several months back; I titled it something like "Odd History").  He is a bit older, probably 50. He was in HORRIBLE shape when he began chemo months ago. He just finished his sixth infusion, and hos oncologist has told hm he may not have to receive any further treatments (he was initially scheduled for eight treatments). He had a PET this week, and the doc said she feels he may already be in complete remission. His is an amazing journey, and you would not believe how bad he looked, and how massively swollen.

I think it was the movie Cinderella that has a song that goes Impossible things are happening every day...

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I'm sorry you are experiencing so much pain.  I pretty much agree with Max and side effects do tend to get worse over the course of treatment. For me, I had pain in my lower back that "pulsed" to my chest/sternum.  I kind of felt like I had the flu but with no fever.  I sometimes took pain meds I had left over from surgery (okayed by doctor). 

Hang in there!