Lymphodema and Spiking Fevers

Alyssha

Hi everyone.  Robert actually asked me to reach out to you all tonight - get some feedback. 

He has not had chemo in 3 weeks - his last WBC count was 1.6.  With all these kids going back to school and such he just keeps getting sick.  Good news is he has had very little rectal pain the last few weeks - now it's just the stomach pain. 

 

They were going to do another set of scans after 8 treatments to see if there was any progress.  It's considered palliative chemo so I guess they felt if there is no positive result it is not worth the misery for him. Since he has only had 4 treatments we really don't know.  He has been "sick" off and on for weeks now.  Some days he barely gets out of bed.  

The chemo he is/was on can cause fever and diarreha but its been weeks and he still can't make it to the bathroom several times a day.  He is constantly in the diapers.  He went from being on lactulose several times a day to barely needing miralax once a day.  I keep praying its a stoamch bug or sickness from one of us, but it looks like maybe I am kidding myself?

Saturday was his 57th birthday.  We went with the boys to see a movie and even to dinner.  That is the biggest outing we have had in months.  Then Sunday he spiked a fever of 103.3.  He also had a lot of swelling in one leg.  

Hospice came today and said with the swelling only being in one leg and nearly the full leg, that it is probably lyphodema caused by either a tumor, or a tumor putting pressure on the lyphh nodes.  They also suggested that the fevers are tumor fevers.  He is eating well but still losing weight.  He is trying so hard, and I so want this to be soemthing that can be fixed.  I know that the cancer probably can't be at this point, but I want more time.  He wants more time.  I am sorry if this is all depressing, I think I just want you all to lie to me and tell me we can get past this hurdle too.  

I am so scared - and I know he is.  I don't know how to support him - I have always been the one to keep the faith.  Someone please tell me how to help him.  

Again I am sorry for the negative sad post - I know you all have lost some valued members of the group recently and I hate to add to anyones grief.  I just feel like so few people have any clue how either one of us feels.  

Thank you to every single one of you that has reached out to me.  ~Alyssha

Trubrit

Dearest Alyssha

I am saddened to read this post, and hear of your husbands, and thus your suffering. 

Please do not feel like you have to apologise for posting. This is what the forum is all about. We are here to listen, advise and even lie, if that is what you want. 

I have heard on here about people experiencing the tumour fevers. I don't know much about them, as I have not expreienced them myslef.

I did have the low WBC, and ended up wearing a surgical mask whenever I was out and about. It looked freaky, silly even, but I felt that it was keeping me safe, so who cares what I looked like. 

I certainly expreienced the inability to make it to the bathroom, and even with Depend underwear, I would still end up with a mess. To make it worse, I was living with a friend and her husband in the big city, as it happened while I was undergoing radiation. It is terribly depressing, not only having to wear the underwear, but soiling oneself three or four times or more a day. It gets old very fast. 

And now I will say, pray for a miracle. They do happen. That the treatment works and your darling husband turns a corner, and that he will see NED in the future.  Miracles happen! Certainly not all of the time, but they happen and why not happen for us. I don't think you have to have a faith in any certain God, they can happen for anyone. 

I pray that you will see this miracle with your husband.  

Keep visiting us here. We will support you as much as we can via cyber space. 

SUE

lizard44

Oh, Alyssha

I'm so very sorry that you, your husband, and your family are going through this. I haven't experienced  lymphadema nor tumor fever, so  can offer no first hand experience, but don't rely solely on the hospice nurses for diagnosis- please let Robert's doctor or doctors know what's going on with the swelling and fever.  There could be causes, especially for the fever, other than a tumor, such as a bacterial, fungal or viral infection and  those need to be ruled out first.  I know he probably doesn't feel like having more tests, but tests might be better than  the anxiety  you're both going going through now by not knowing the cause,especially since you say he began running a fever  after going on an outing.

Like Sue says, even if  his fever  does turn out to be tumor fever, miracles do happen, and there's no reason it shouldn't happen for Robert.  Remember too, that palliative cancer care, although it's not considered curative,  is  designed to  give the patient and family more time and to prevent and/or treat side effects and symptoms of the disease and its treatment, as well as the psychological problems  like anxiety, frustration, depression, fear, etc.  that are also  so much a part of  a cancer diagnosis. It does sound like   some of those  physical and psychological issues aren't being adequately  addressed in his treatment and I would  discuss that with his medical team.

I'm sorry I can't offer much more constructive help, but meanwhile, I am sending  positive healing thoughts that you will both weather this latest hurdle and that there will be more family outings to enjoy together  that don't cause  fevers or other  problems.  As Sue said, keep visiting, and keep us informed as to how you and Robert are doing and try to squeeze as much love and life as you can out of each day.  

Best wishes,

Grace/lizard44

Alyssha

Please Pray

I finally spoke to his dr.  She did not have much to say.  He has spiked fevers before and there has never been an increase in his WBC count so they feel its pretty safe to say they are tumor fevers. The swelling in the leg is either from a new tumor, or possibly a DVT, but they won't touch him surgically and he can't have blood thinners, so it really doesnt matter what it is, they can't do crap about it.  The chemo this time only increased the rate of his decline, so it looks like our only option is another miracle.  Honestly we have been blessed with several of them in the last two years - I have not given up on the thought that we may have another, but I am very scared and sad and I know he is too.  I read in someone elses post that people think there is always something that can be done - and I guess on some level we thought that too.  Now that it appears that nothing else can be done I am not sure what to do.   Pray.  And know that you all are praying with me.  Thankyou all so much.  

lizard44

Question- which you may already have answered in another thread

This may have already been asked and answered, but other than delaying chemo, has Robert received any treatment for the low white  blood cell count, such as Neupogen or Neulasta?  During  initial treatment ith FOLFOX 6 plus Avastin, my WBC dropped to 2.9 after the  second treatment, after a couple more stops and starts,   I began getting Neupogen shots between treatments which enabled the chemo to continue.

There might be a reason for the oncologist to  not be treating him  for the low WBC, but  it seems that not treating it makes him  extremely suscetible to any infection that might be around.

Peace and love,

Grace