NGGU presentation

My name is nggu and I am from Copenhagen, Denmark. I am 73 years of age.

I was first diagnosed with MM on Dec. 20, 2012. At that time I had a rather big tumor (about half a litre), thorax left side, outside the rib-cage. At this stage very painful.

I knew someething about chemotherapy, but not a lot. The doctor (at the University hospital in Copenhagen) was in a rush - and I was rather unprepared - and decided that I should have chemo, melphalan, dexametason, and velcade. I didn't get sufficient information about the side effects of chemo to make a conscious decision. (My fault!).

My system did not accept the velcade (bortezomib), and very early on I became pretty sick. Late February I told the doctor that I didn't want anymore chemo. He was hell-bent on the velcade but I insisted that I wanted no more of that stuff. I had developed neuroproblems and mid-march I could only walk with a cruch. I also developed a big time eye-infection which in all honesty honesty took up almost my whole face. To the doctor (s) there was nothing abnormal. On March 22nd I fell (no fractures) and was hospitalized. At this point I am paralyzed in my right extremity, from hip to foot. Wheelchair. Both legs and both feet are now the site of what I later learn to be a very painful chemotherapy induced peripheral neuropathy.

The hospital tries to determine why my right leg paralysis. PET and MR scannings; but they nevfer come up with a satisfactoroy explanatioin. Their cardinal suspect was some kind of nerve compression somewhere along the line. There is never a diagnosis.

After five weeks in bed in the hospital I am transferred to a nursing home, paralysed and wheel chair.

After four months in the nursing home and thanks to some good people and training I begin to regain some strength and can walk somewhat with a 'walker'.

I am sent home and equipped withj various physical instruments of help. I write a complaint to the relevant Danish complaint authorities. (Still ongoing). I change doctor. My present M.D. is OK.

In June/July of this year I was on a rehabilitation trip to southern Spain. During my stay I developed more than the usual pains and problems with my right leg and foot. The very responsable doctor at the facility sends me to the American hospital in Malaga. And what do they find? The necrofile remains of a pretty big DVT. Back in Copenhagen the Spanish finds are confirmed.

Since stopping the chemo in February '13 I have had no chemo medicine for the MM, which has remained rather stable. All my strength has gone into coming to grips with the neuropathy and pains. I have had some success, but am still badly cripled by pain. None of the traditional painkillers, morphine etc. seems to have any real effect on the pains; and when taken in big dosis I develop rather unpleasant stomach problems. The only 'medicine' which seems to help and takes focus away from the pains is vaporized cannabis. I take it but not a lot.

Two months ago, approximately, my MM blood-work seemed to be moving in the wrong direction. With great hesitation I agreed to accept a light weekly dose of dexametason and a daily 50 mg of Sendzoxan (cyclophosphamid). I have insisted to also take 'my own protocol' i.e. the decoction of 6 grms. of Graviola leaves (Amazonian Rainforest). Over the last two months the Immunglobin G has decreased by about 20%. Whether it is due to to the light chemo or to Nature's leaves remains to be seen. My next blood work will be on October 31st.

Conclusion:

Any ideas and suggestions will be profoundly appreciated. I am still deeply and frustratingly involved in how to diminish my neuropathy and DVT pains. I am very conscious of diet and supplements.

nggu

5 Replies

oldestnewest
  • Hi nggu. Sounds like you've been through hell with this! I saw my Mom go through Chemo and both my sister and I have decided we never will! I'm told by my GP that my MM is not the dangerous kind, whatever that means. Hoping the best for you with this new recipe you're trying. I'm sure that a lot of what the doctors and pharmaceutical companies recommend are destructive to other balances in the body, and sometimes it seems like finding our own solutions might be the best route to take. Easy for me to say right now...we'll see how it goes in the future. Anyway, best of luck to you and keep us posted on how your new results go!

    Warm hugs!

  • Forgot to ask....what's a DVT....

  • Alexaundria - I'm presuming DVT is Deep Vein Thrombosis, a clot in the veins of your leg

  • Thanks mcbridey!

  • Welcome nggu!

    We at Patient Power strive to connect patients, and the people who love them, with the knowledge, confidence and hope to live well with cancers like myeloma, through news and information, patient stories and, now, this peer-to-peer community here on HealthUnlocked.

    Connect with others! Ask questions to gain support from people who have been where you have been, and share your experiences to help others. Whether you have MGUS, smoldering, newly diagnosed or relapsed refractory myeloma, your perspective is valuable here.

    Welcome to a community of powerful myeloma patients. I look forward to getting to know you!

    Sheryl McIntire

    Patient Power

    PatientPower.info/Myeloma

    Get email alerts | ow.ly/B0i3p

    Facebook.com/PatientPowerMyeloma

    Twitter.com/PatientPowerMM

    YouTube.com/PatientPowerMyeloma