Lymphoma - Any Advice?

Discussion in 'Off The Beaten Track' started by Bonita, Apr 19, 2013.

  1. Bonita

    Bonita Active Member

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    I'm a regular lurker but not a frequent poster.

    My husband was diagnosed with lymphoma yesterday. He has a lump on his neck which was biopsied last week.

    I was wondering if anyone here has gone through this, either themselves or a loved one.

    I'm so devastated and worried. To top it off, I'm hiding in my house scared to death as I'm in one of the surrounding Boston cities told to stay inside.
     
  2. Wiery

    Wiery Well-Known Member

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    I"m sorry. There are several types of lymphoma; the most common types are Hodgkin's and non-Hodgkin's lymphoma. Do you know which type he has?
     
  3. Bonita

    Bonita Active Member

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    No, not yet. He is having a full body scan next week, surgery the week after that. At least that was the plan. But Boston is in lockdown and I assume his doctor's office is closed today.
     
  4. Alixana

    Alixana who is on vacation!!

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    ((((Bonita and family))))) What a horrible week for your family. :(

    Not sure what type of lymphoma your husband has .. my 83 year old dad has a non-aggressive type of non-Hodgkins lymphoma diagnosed 4 years ago. One thing I would do differently today is wait until I knew exactly what type of lymphoma it was before doing my online research. In hindsight, that put even more stress into a massively stressful situation. But that's easy to say now .. but hard not to do at that moment because we want to know what's going to happen and we want control of the situation.

    This didn't happen right away, but one of the best things my mom and I did was to join a support group for caregivers of people with cancer. We took turns going .. it got us out of the house (my dad was housebound for almost a year) and also got us connected with a few families of people with the same type of lymphoma. We're still close to this day.
     
  5. Allskate

    Allskate Well-Known Member

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    I'm so sorry you're dealing with all of this.

    Boston is one of the best places in the world to be treated for lymphoma. A friend of mine moved back there when she was diagnosed with lymphoma, because of the high quality doctors and treatment. She's been in remission for five years now. There's no question that the diagnosis and treatment are stressful and more than unpleasant, but know that there is hope. And do find a support group if you think it will help. The stress obviously doesn't just affect the patient.
     
  6. Simone411

    Simone411 aka IceSkate98

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    I'm so sorry to hear about your husband. Sending my prayers his way. My mom was diagnosed with Ovarian Cancer in 1977. She stayed in remission for 8 years. In 1985, her cancer came back as non-Hodgkin's Lymphoma. She was given a platinum-based chemo which did prolong her life for 2 more years. The platinum-based chemotherapy is still one of the treatments for cancers such as Ovarian Cancer and non-Hodgkin's Lymphoma. There may be more options for treatments by now for non-Hodgkin's Lymphoma if that's what it turns out to be. The platinum-based chemotherapy was definitely working for my mom, but she had to stop taking the chemo because it was destroying her kidneys.

    http://platinum.cancertreatment.net/
     
  7. skatesindreams

    skatesindreams Well-Known Member

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    ((((Bonita and family)))))
    Thinking of you.

    Hoping that you receive the most optimistic report possible.
     
  8. Wyliefan

    Wyliefan Well-Known Member

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    I'm sorry, Bonita. Prayer offered for you and your husband!
     
  9. milanessa

    milanessa engaged to dupa

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    The survival rate for lymphoma is quite high. Hodgkin's and non-Hodgkin's rates differ a bit so the advice to stay off the web is good advice until you know which type he has. best wishes.

    (((Mr Bonita)))
     
  10. orientalplane

    orientalplane Mad for mangelwurzels

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    Bonita, I have a good friend who has lymphoma, and she's doing very well. It was first diagnosed about twelve years ago, and has recurred a couple of times. On these occasions she's had chemotherapy, which she describes as "unpleasant but not traumatic", and it has done the trick as she has gone back into remission. There are new drugs now that can lengthen the time between recurrences, should the cancer come back. I don't know how many years it takes before a doctor might call someone "cured", but I also know someone who contracted the illness while still at school and she too is still around and was healthy the last I heard. As milanessa says, the prognosis is often good for patients.

    I'm sure you are feeling terrible with all that's going on around you, but I echo the others' advice not to do much research until you're sure exactly what your husband is suffering from. In your anxiety you are liable to suspect the worst.

    Good luck and best wishes to you both.
     
  11. madm

    madm Active Member

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    I have a friend whose husband had non-Hodgkin's lymphoma (advanced stage), and he went to Stanford twice for bone marrow transplants (first one his own bone marrow, second one 4.5 years later with donor bone marrow). He and his wife lived in the Bay Area for about 6 months during his chemo and radiation treatments and had to keep an extremely sterile living environment. He is now 10 years post treatment and doing well. He is a high-level manager with a high tech company and has plenty of stress. It is possible to beat this disease if you treat it very aggressively. Best of luck!
     
  12. backspin

    backspin Active Member

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    Hi Bonita, I'm very sorry to hear about your husband's diagnosis!! I was diagnosed w/ Non-Hodgkins Lymphoma in October, & just finished 6 rounds of chemo. I had Diffused Large B-Cell Lymphoma, which is the most common type of NHL in adults.

    I TOTALLY agree with others, as much as you can, stay off the web until you have a complete diagnosis! I ignored that advice & spent some terrified days because I didn't know what I had & there are so many types of lymphoma. The other part of that is that things change very quickly in the world of lymphoma, and if an article is even a year old, the info is often outdated & no longer relevant.

    Just so you know, lymphoma can be tricky to pin down on exactly which type you have; for me it took 3 biopsies to get a good enough tissue sample. Be patient if this happens to you; treatments vary depending on what type it is, so it's very important to know before they give him anything to treat it. Lymphoma is VERY treatable!! Some types are curable; some (the chronic type) are managed & kept in remission. I had R-CHOP chemo, which is the typical treatment for aggressive NHL. It really wasn't horrible for me; lost my hair & had some very tired, not-feeling-good days, but was able to work somewhat regularly through it & have some good times as well. The chemo I had is a 3 week cycle. What I learned is that you don't look very far ahead, it's too overwhelming. Focus on what you have to do TODAY, or even this hour. Tiny little steps will add up and you WILL get through it!!

    My tumor responded so fast to the chemo that my PET scan after 2 treatments was totally clear!! (still had to have the full 6 cycles, but am very happy w/ the outlook) My doctor tells me I have about an 80% chance of a complete cure.

    I also found it encouraging to look up info on new drugs that are being developed; one that just got fast-track approval from the FDA is called Imbrutinib, and is looking hugely promising. They're mainly looking at it for second line treatment (if you've relapsed) right now, but are also starting to do studies using it in first line treatment. One of the drugs your husband is likely to get, Rituximab, completely changed the outlook for lymphoma patients about 15 years ago. We are very lucky to have such great drugs available to us now!! And there are several others in trials now that are also causing a stir that will be coming down the pike soon.

    Please feel free to contact me any time & I'll be very happy to give you any help I can!!! If expenses are an issue, be sure you get in touch w/ a social worker at your hospital who can help you apply for grants, etc. I got 2 grants that totaled $4600 which was a big help. I also have an online crowd-source fundraising page that was also very very helpful. You can also check out resources like chemocare.com (Scott Hamilton's organization) & http://www.lls.org . There are a lot of great resources that can help.

    Sending you great thoughts & best wishes!! Hang in there, focus only on today, and you will get through it!! You'll be in my prayers. :)
     
    Last edited: Apr 19, 2013
  13. PDilemma

    PDilemma Well-Known Member

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    I agree with those telling you to refrain from web searches. My brother went web searching immediately when my dad's cancer was diagnosed and scared himself to death. Nothing was as bad as what he read online.
     
  14. Bonita

    Bonita Active Member

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    Thanks, everyone. I sadly have already Googled a lot, couldn't stop myself.

    I really appreciate the stories and encouragement. Once we know more I will reread your posts.

    Backspin, my husband has it, not me. Luckily he has Blue Cross, we will be stuck with co-pays only.

    Another huge stress is that I don't drive. I have my license but haven't driven since 1997 when I was almost killed by a driver coming down the wrong side of the road at about 45 mph.

    I imagine we make too much money as a unit for any help with transportation.

    I have a very good friend who survived non-Hodgkinson, 20 years now, but he has had major health issues, including kidney failure, since.

    I lost my best friend, my mom, to cancer five years ago this May. So I just hear cancer and die inside a little.

    After she died, we lost one pet every year for the past four years.

    I just really feel like I'm on the Life Sucks Train lately. This is one day that work would have been a good distraction, but my work city is in lockdown.
     
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  15. PDilemma

    PDilemma Well-Known Member

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    My mother does not drive due to visual impairment. My parents have a lot of money. A lot.

    Recently, chemo side effects have meant my dad cannot drive. The American Cancer Society, through the assistance of a Nurse Navigator, has arranged for a local volunteer to drive my parents for all of dad's oncology related appointments when I or my brother cannot get there.

    When you see the oncologist, ask about services of a ACS Nurse Navigator in your area. If they aren't able to refer you, check here for one in your area. Dad's Nurse Navigator is a lifeline for assistance, explanations of things they don't understand, coordinating things between different doctors, etc... Link: http://www.cancer.org/myacs/midwest/programsandservices/american-cancer-society-navigator
     
  16. Vash01

    Vash01 Well-Known Member

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    (((Bonita)))

    Good luck to your husband. I don't have any advice for you because I have no knowledge. My best wishes are with him and you.
     
  17. doubleturn

    doubleturn Rinkside on my iPhone

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    Another one to second http://www.lls.org. They helped my family with mileage and parking reimbursement 18 years ago when my brother was being treated for Stage 4 Non-Hodgkins Lymphoma.
     
  18. barbk

    barbk Well-Known Member

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    Bonita -- sending good thoughts -- and I second PDillema's suggestion of contacting the American Cancers Society for rides -- we also have in our area a special transit service that provides door-to-door (actually helping you into your house) service for those who need it. If you can afford it they charge $2.50 or so per ride, otherwise it is no charge.
     
  19. numbers123

    numbers123 Well-Known Member

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    (((bonita)))
     
  20. AragornElessar

    AragornElessar Well-Known Member

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    Bonita, I don't know what else to say other that I am so sorry for *everything* you and your Family is going through right now. Please keep us updated and Hang In There!! ((((HUGS))))
     
  21. quartz

    quartz Point of Know Return

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    (((Bonita)))) hope you will get some more definite answers soon, and also ((((backspin))) for dealing with similar issues. Sending both of you positive and healing thoughts.
     
  22. victoriajh

    victoriajh Well-Known Member

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    hang in there bonita
    sending you loads of postivie and healing thoughts for your family - and a better year ahead
     
  23. made_in_canada

    made_in_canada INTJ

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    ((Bonita & Mr. Bonita))

    I had Stage 2 Hodgkin's Lymphoma almost six years ago. I underwent 4 months of chemo and last fall was told by my oncologist he didn't ever want to see me again ;) There are many positive outcomes for lymphoma. I found things much easier to deal with after I got into the routine of chemo and had got past the diagnosis/staging part of things. If you have any specific questions, please ask or pm me. Everyone deals with illness and crisis slightly differently and I think the thing I tell everyone who asks for my advice/experience when going through something similar is that your feelings are valid. Some people are sad, some people get angry, etc... It's all valid. I had a lot of people offering sympathy and a lot of friends/family were a lot more upset than I was. I really hated that. My attitude was totally this sucks, let's deal with it. But people told me I wasn't upset enough, and that I was deluding myself. Not helpful. You might very quickly find that you have to be a gatekeeper of sorts for your husband. Chemo exhausts you to your very core and a lot of really well-meaning people in their 'helpfulness' are really not helpful. It gets hard to be polite to people and deal with people when your body doesn't feel like your own anymore and everyone wants to share their latest miracle cure or whatever. Finally, make sure you take care of yourself. Don't try to take on the caretaker role in its entirety by yourself. Ask for help when you need it (even if it's just an ear to listen when things get tough, which it probably will). I'll be keeping you both in my thoughts and prayers.
     
  24. Bonita

    Bonita Active Member

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    Thank you all for the positive encouragement and info. We really need it. I'm going to forward this thread to "Mr. Bonita," LOL.
     
  25. Simone411

    Simone411 aka IceSkate98

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    Bonita, there wasn't very many options back when my mom had cancer. But because of her and many others that volunteered to try experimental chemotherapies back then, the treatments have come a long way. Keeping "Mr. Bonita" in my thoughts and prayers. :)
     
  26. Bonita

    Bonita Active Member

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    My mom died of cancer too, so sucks losing your mom. My mom was on a med with a freaking co-pay of $500/month and still died.
     
  27. Bailey_

    Bailey_ Guest

    No advice, just sincere well wishes for you and your husband. My mom battled cancer last year. It's not an easy road, but there are some very effective treatments and no reason at this time to think that your husband will not have a very good outcome. You will be in my thoughts and prayers.
     
  28. mrr50

    mrr50 Well-Known Member

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    The American Cancer Society has a wealth of information and help. As posted earlier, I just want to keep bringing them up. Also if you need help, don't be afraid to ask friends and neighbors. I've been a 'neighbor'.
     
  29. Bonita

    Bonita Active Member

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    My husband finally has a diagnosis. He has Hodgkins mixed cellularity. The doctor told him it is one of the more treatable ones, we’ll see. He’s going to treat at the Dana Farber in Boston with a lymphoma specialist who is a friend of a friend.

    Backspin, I tried to send you a PM, but your message box is full up!
     
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  30. Garden Kitty

    Garden Kitty Tranquillo

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    Thanks for updating us Bonita, and while all of this is scary, I'm glad your husband has a relatively good diagnosis and that he is going to such a leading and accomplished facility for treatment. This sounds very positive, but I'll keep him and you in my thoughts.