Grasping at Straws

Hugstoyou
Hugstoyou Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello, This is my first post to this discussion group and I thank you all for listening. A member of my family(age 49) was diagnosed last year 2009 with Non-Hogkins Lymphoma (Follicular,Indolent) Lymph nodes in cervical, axillary and mediastinum. Biopsy was done on cervical node confirming this diagnosis. He was offered to participate in a trial study which he agreed to but when that did not seem to be helping, he was encouraged to got the way of Chemotherapy.
Since then he has gone through R-Chop (3x) and has tolerated all well...Blood work always came back good. A month or so after last chemo, pain returned to his back. (He had an injury to his rib many years ago and this area seems to light up on pet scans) Biopsy was done on this area and that came back as Large B cell which we were told is much more aggressive. January 2010
We talked about stem cell replacement and other hospital options. The new plan was to now due R-ICE plus Neulasta repeating the cycle 3 times before (every 14 to 21 days) and then Stem cells would be harvested.(March 2010)
He consulted another hospital in the immediate area which had more experience with SCT and the SCT was to be done there. In the meantime his pain was worse in his back and his oncologist suggested another Pet scan and that a part of his rib be taken out. After this operation he remained in the hospital for the R-ICE treatments.(May 2010)
They also said they found a donor that was 100% match.Once this next set of R-ice was done he went back to the second hospital that he decided was were he wanted the SCT to be done. They denied him as they said he was not in "full remission"
Wanting to stay close to home for treatment he decided to stay with the first hospital for the SCT. Once admitted he had more chemo treatments(BEAM?) and also Total body radiation and targeted radiation to the Rib area.(August 2010)
(All this was pretty well tolerated but he did have bouts of nausea and diahrea.) They then told him this was the perfect time for the transplant.
He remained in the hospital for about 5 weeks and contracted C-Diff (was put on anti-virals) They also said he had Cytomeglovirus, but was released from the hospital and told he was stable.
The next few weeks at home he was doing ok...tired but he was told that was normal. He bent down to pick up his child one day and his back started hurting in the same area as before. He took pain meds when necessary but pain seemed to get worse. The doctor ordered a Ct of his chest and abdomen which was unremarkable, but doctor could not find where the pain was coming from so decided to do a superficial biopsy of the area. That biopsy came out negative. His pain got worse and he continued taking pain meds as now he was in pain and scared. Doctor ordered a "deeper biopsy" but when he went to hospital to talk about it they did a chest xray and found his lt. lung was collapsed. They admitted him through the ER and he is now in ICU. The doctor's did a biopsy of the lung fluid and called in the am to say it was clear of Lymphoma cells...but by 5pm we got a call saying "another" biopsy confirmed it was Lymphoma.
The put in a chest tube through his side and told us it was a matter of time. We are on our way up today to get more answers or at least pose more questions.
They are talking hospice but yesterday they took out the suction from the chest tube to see if lungs filled up as fast (yet to be answered) but his bloodwork levels (creatine) which was extremely elevated as well had gone back to normal...
I am going to ask if maybe a transfer to Sloan or another hospital would be advisable. At the beginning they said He would have options if the SCT did not work...things just seem to be happening too fast.
Again thanks for reading..if anyone has any input it would be greatly appreciated.

Comments

  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #2
    Sorry
    to hear that your family member is going through so much....I don't have much experience or advise to share, but wanted to come by and let you know that this board is wonderful and you will get a lot of responses and hopefully some good advise as well. Know I'm keeping you and your family in my thoughts and prayers. Andrea (Hodgkins Stage4 - Remission)
  • Hugstoyou
    Hugstoyou Member Posts: 3
    #3
    Swtkoolaid said:

    Sorry
    to hear that your family member is going through so much....I don't have much experience or advise to share, but wanted to come by and let you know that this board is wonderful and you will get a lot of responses and hopefully some good advise as well. Know I'm keeping you and your family in my thoughts and prayers. Andrea (Hodgkins Stage4 - Remission)

    grasping at straws
    Thanks for the reply. I am feeling very angry, as it seems after so much effort and research and HOPE given the hospital and Doc's have turned about-face. We talked on the 8th about other therapy's,chemo treatments in detail! and transfer to other hospitals closer to home. I asked what the reason was why the second hospital denied starting the SCT and this hospital decided it was the right time, was answered as "Well we don't work at that hospital"
    All fluids were stopped yesterday morning and Morphine started, vital moniter moved out of his room. He was eating and urinating without a foley when we were there and getting up and moving around room (uncomfortable due to chest tube) but he was talking and saying he wanted to go home, kidney functions had stabilized.
    I am a "cousin-in-law" but he called me to go to visits with them for the past year to make sure all was in his best interest...I am in doubt now.
    Knowing what everyone is going through on this board I do not want to discourage anyone...just(I guess) make sure everything is explained to you more then once and in detail. It is "their" job but "our" lives.
  • Chris17
    Chris17 Member Posts: 175
    #4
    Hugstoyou said:

    grasping at straws
    Thanks for the reply. I am feeling very angry, as it seems after so much effort and research and HOPE given the hospital and Doc's have turned about-face. We talked on the 8th about other therapy's,chemo treatments in detail! and transfer to other hospitals closer to home. I asked what the reason was why the second hospital denied starting the SCT and this hospital decided it was the right time, was answered as "Well we don't work at that hospital"
    All fluids were stopped yesterday morning and Morphine started, vital moniter moved out of his room. He was eating and urinating without a foley when we were there and getting up and moving around room (uncomfortable due to chest tube) but he was talking and saying he wanted to go home, kidney functions had stabilized.
    I am a "cousin-in-law" but he called me to go to visits with them for the past year to make sure all was in his best interest...I am in doubt now.
    Knowing what everyone is going through on this board I do not want to discourage anyone...just(I guess) make sure everything is explained to you more then once and in detail. It is "their" job but "our" lives.

    good luck
    I dont know what to say either, i have heard of cancer treatment centers of america it wouldnt hurt to call them, they have a website cancertreatmentcenters.org maybe they can help you or have some advise they can give you, good luck and please let us know what happens, good luck will keep a good thought for you
    Chris
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #5
    Hugstoyou said:

    grasping at straws
    Thanks for the reply. I am feeling very angry, as it seems after so much effort and research and HOPE given the hospital and Doc's have turned about-face. We talked on the 8th about other therapy's,chemo treatments in detail! and transfer to other hospitals closer to home. I asked what the reason was why the second hospital denied starting the SCT and this hospital decided it was the right time, was answered as "Well we don't work at that hospital"
    All fluids were stopped yesterday morning and Morphine started, vital moniter moved out of his room. He was eating and urinating without a foley when we were there and getting up and moving around room (uncomfortable due to chest tube) but he was talking and saying he wanted to go home, kidney functions had stabilized.
    I am a "cousin-in-law" but he called me to go to visits with them for the past year to make sure all was in his best interest...I am in doubt now.
    Knowing what everyone is going through on this board I do not want to discourage anyone...just(I guess) make sure everything is explained to you more then once and in detail. It is "their" job but "our" lives.

    Hope
    Whatever you do don't give up hope....everything sounds so confusing and yes treatments, doctors ect... can just add to all the confusion and they expect us to understand and get it the first time. I agree that maybe you should call the cancer center of america and see if they can lead you in a more positive direction - its worth a try. Know that everyone here is praying for you and thinking of you and yours. I do hope things get better. Andrea
  • Hugstoyou
    Hugstoyou Member Posts: 3
    #6
    Swtkoolaid said:

    Hope
    Whatever you do don't give up hope....everything sounds so confusing and yes treatments, doctors ect... can just add to all the confusion and they expect us to understand and get it the first time. I agree that maybe you should call the cancer center of america and see if they can lead you in a more positive direction - its worth a try. Know that everyone here is praying for you and thinking of you and yours. I do hope things get better. Andrea

    grasping at straws
    This is a very special place..wish I would have found it sooner. Thank you all! Will post when we know more.
  • truckingalong
    truckingalong Member Posts: 445 Member
    #7
    Hugstoyou said:

    grasping at straws
    This is a very special place..wish I would have found it sooner. Thank you all! Will post when we know more.

    Positive thoughts
    I will be thinking of you with positive thoughts and prayers. Life can be not logical but at least we can put light into it the best way we can. Best of luck and please keep us posted.

    Liz
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #8
    truckingalong said:

    Positive thoughts
    I will be thinking of you with positive thoughts and prayers. Life can be not logical but at least we can put light into it the best way we can. Best of luck and please keep us posted.

    Liz

    Me too...
    I will also keep you in my prayers and keep good thoughts for your family member. Please keep us informed and continue to post..we all care and know how hard this is on everyone involved. Take care...Love..Sue (FNHL-2-3A-6/10)
  • onlytoday
    onlytoday Member Posts: 609 Member
    #9
    allmost60 said:

    Me too...
    I will also keep you in my prayers and keep good thoughts for your family member. Please keep us informed and continue to post..we all care and know how hard this is on everyone involved. Take care...Love..Sue (FNHL-2-3A-6/10)

    Thinking of you
    I don't have words of wisdom just want to send my best wishes and hugs and prayers. I got my second opinion from Sloan and I think they are amazing. Good luck, keep us posted.

    Donna NMZNHL grade 1 stage 4 05/2010

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