A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: "Desperately" Seeking Primary Bone Lymphoma Mates!

  1. #11
    Regular User
    Join Date
    Mar 2017
    Posts
    44
    Hello Diane,

    Things seem to be falling in place as they should...

    The port is minor surgery, usually done under local anesthesia with no hospital stay involved - which doesn't mean that it cannot be uncomfortable or even painful in the following days (that's highly variable from one person to the next) - so I imagine it would not prevent you from going to Houston, but you may want to ask the surgeon for advice. It is necessary however, to protect your finer veins from the effects of the chemo drugs, and since chemo is certain, the sooner it is in place, the better. Just make sure it is the kind that is compatible with MRI machines, as you will likely need this type of imaging test repeatedly down the road.

    It is a good idea to have anxiety meds at hand. They are good in that you do not need to be taking them on a daily basis, but rather handy when you feel overwhelmed (or about to become so...). I have only used one, once last December before a bone scan. I had had a panic attack out of the blue a few days before, and that was definitely the most traumatizing event in my medical journey. My PCP recommended I always keep them with me, which I do to this day.

    Regarding bisphosphonates, I have wondered whether it might be a good idea, but it does not seem to be part of the standard (if that word exists in such cases as ours...) course of treatment. I have not been offered them, and have not asked about them either. The topic is of interest to me, so if you do ask and if Dr Fowler has a clear answer about that, I would love to find out. I may also ask my hematologist next time I am in for treatment in a month.

    On a related point: perhaps, among the numerous blood tests you've already had, they have checked your vitamin D level. Mine was really low, and I have been supplemented over the past year. You might ask about that.

    R-CHOP can be a rather rough ride, and I know I couldn't have kept on working during chemo, but that really depends on the type of work involved and, I suppose, on individual capacity. I imagine that doing deskwork from home is feasible, but that was not an option for me.

    The treatment will make you lose your hair. Rest assured, it will grow back. You may want to pick a wig before this starts, but this is not absolutely necessary. I carefully selected one for myself, which I then found too uncomfortable to wear once my hair was gone... I found silk scarves to be much better.

    One last word of advice, if you'll take it: when you think of cancer and chemotherapy, you generally have images of very sick people suffering from constant nausea and diarrhea. While R-CHOP does cause nausea, this is well-controlled with the anti-emetics your medical team will provide you with. You just have to make sure you take those as prescribed without waiting for nausea to take a grip. However, both the chemotherapy itself and the anti-emetics cause constipation, which can make you miserable. I would strongly advise you to take appropriate measures (dietary and medication) before you even start your first round of chemo. All points, major or minor, trivial and mundane as they may seem, should be discussed with your medical team without any taboo.

    I will be thinking of you as you engage on that path, and looking forward to reading your news. Please feel free to come back with any questions you may have.

    Roz

  2. #12
    Regular User
    Join Date
    Aug 2017
    Posts
    18
    Hi Roz,

    Thank you for the helpful tips, they are very much appreciated. I have already picked up my mini-pharmacy and had a very caring Pharmacist explain things and offer some advice as well. I did not even know my Onc's office was prescribing all those things when I received the text indicating my script was ready! The Pharmacist suggested I consider taking Senna or one other that I can't recall right now to help with the side effect of constipation. I had a pretty healthy diet prior to this, but I have definitely added more greens, along with Turmeric, more ginger, pineapple, flaxseed, and chia, along with organic whenever possible and completely cut out nitrites and nitrates (although, I did not eat things very often with those anyway). The Pharmacist also talked with me about the two meds prescribed for nausea and she recommended that I take the Ondansetron first and see if that works. Then, if I still need something more, then I should take the Prochlorperazine. I have not looked into these yet, so I don't know if these are standard for those taking Chemo or not. If you are familiar with these, what do you think about the Pharmacist's recommendation?

    On the anxiety med, I have taken two of them so far and I also have taken to carrying them with me wherever I go, along with whatever pain medication I am taking and my notebook. I took one before the formal bone and bone marrow biopsy and then I took another on a different day when I was feeling pretty emotional. I find that on days or nights especially when I have significant pain, I have a harder time managing to get through without emotional ups and downs.

    It is interesting that you mentioned the vitamin D deficiency because about three years ago when I received the results from my annual CBC and Thyroid panel, my Vit D was very low. My Nurse Practitioner advised me to start taking a supplement, which I did. So, I have been taking one religiously for the past three years. My Vit D has been fine ever since then on my blood tests.

    I have thought about what I will do during the time that I lose my hair and this is one thing I am mad at cancer about. You see, I have long hair that is one of my positive features that I have often received compliments on. I know this may sound rather shallow and vain. Of course, I know rationally that it is a very small price to pay to add years to my life. Anyway, I think I will also prefer the silk scarves over a wig. I will be undergoing the treatments until late Dec. or early Jan., so I may also wear some winter hats...do you know approximately how long it takes for the hair to grow back? I guess I will have to get used to having very short hair for quite a while afterward, assuming the treatments go well.

    Thank you again for taking the time to share your experiences and knowledge with me. You give me some hope and that is worth a lot! I could be wrong, but it seems that ours may the worst of one of the better types to have if one must have any at all.

    Wishing you NED for life!
    Diane

  3. #13
    Regular User
    Join Date
    Mar 2017
    Posts
    44
    Diane,

    It is great that your pharmacist is knowledgeable and caring. She may have already given you some advice on managing your treatment – which can be a full-time job : Prednisone first thing in the morning Days 1 to 5, Omeprazole after dinner, anti-emetics (more on that below), preventive antibiotics and antivirals... Some once, others twice a day... When I came home from hospital with my bunch of prescriptions after my first infusion, I printed out a chart with all prescribed doses for the three weeks ahead. All I needed to do was then to check off each dose as I took it. That really helped me follow each cycle of treatment without forgetting anything.

    Regarding anti-emetics, I cannot really comment on your combination. I got Emend (125mg on Day 1, then 80mg on Days 2 and 3) and Ondansetron twice a day on Days 2 to 6 of each chemo cycle. I was slightly nauseous - and increasingly so with each cycle, but I would say it worked fairly well. I remember that I did continue the Ondansetron for a bit longer on the last couple of cycles.

    Among its side effects, R-CHOP can also make your skin painfully dry (that started within hours of my first infusion) and cause mouth sores. You may want to consider having some rich skin moisturizer and alcohol-free mouthwash handy.

    I, too, wore my hair long. I can totally relate to the hair loss preoccupation. I would not say it is shallow or vain - rather, that it is difficult to come to terms with (among other things, and even though it is the most minor issue) a change of appearance that you did not choose for yourself. There are, however, positive aspects to having short hair: for one, it is much less maintenance - "washn'go" so to speak. No more struggling with a blowdrier when you're already fatigued and in pain. No worries when it's rainy or windy. It does not even have to look bad. You may find that short hair suits you even better than long.

    I clipped my hair to about 1.5 in. on day 11 of my first chemo cycle, as it seemed to be behaving strangely at that point, and I did not want to wake up the next morning in an ocean of hair. In retrospect, I believe this afforded me almost an extra month of hair on my head, as the lighter the weight, the lesser the pull of gravity...

    Hair continues to try growing in between chemo infusions, but is killed off by the next dose, so recovery starts as soon as nothing interferes with growth. My last chemo infusion was on June 17, 2016. By the end of August, my head was sufficiently covered that I no longer needed to wrap it in a scarf. It then looked like an extra-short pixie. My first visit to the hairdresser was some time in late October/early November. The hair was really fine at first, but I would say it took six to eight months to achieve normal thickness.

    What also contributes to changing your appearance is eyelashes and brows. These do not fall off as early as hair, as long as you treat them extra-gently : no mascara, no makeup remover. Recovery is sluggish, so it's best to spare them as much as possible.

    On another front, you mentioned having hypothyroidism – if you don't mind my asking, is it Hashimoto's ? There seems to be a correlation between that autoimmune disease and some form of lymphoma, so I am surprised that no doctor seemed to pick up on that bit of information... Both my mother and sister have it, but I don't, and yet I am the one with lymphoma... Go figure!

    To end this long post, I am glad if I can help you prepare for and get through this. I started this thread hoping to find someone I could share experience and information with. I do hope we can learn from each other, as specific information on the course of our disease, bone recovery, signs and form of relapse, is pretty sparse, to say the least!

    Good luck to you. I hope your appointment with Dr Fowler gives you much-needed answers. Looking forward to reading your updates.

    Roz

  4. #14
    Regular User
    Join Date
    Aug 2017
    Posts
    18
    Greetings Roz,

    I'm not sure where to begin, so maybe I will start with where I am now and work backward (eventually). I just completed my first round of DA-R-EPOCH at MD Anderson in Houston and they treated my through Hurricane Harvey! I arrived here on Monday, August 21st before the storm came in, met my brilliant Oncologist (Dr. Nathan Fowler), who is a Follicular NHL expert, had a third bone and bone marrow biopsy, had an MRI of my Brain, and a diagnostic lumbar puncture, and was admitted to the hospital and started on the Rituxan part of my DA-R-EPOCH regimen by Thursday evening. So, my home town got part of my diagnosis right, but they missed that my Follicular NHL had transformed to Diffuse Large B Cell Lymphoma. I am so thankful that we came to MDA as they are amazing! Dr. Fowler was the first Dr. who actually expressed immediate concern about my bone fractures and the possibility that there could be brain involvement. B/c he ordered an MRI of my brain, they found three small possible areas in my cerebellum that could have involvement. Thankfully, the CNS fluid came back negative for Lymphoma, but we are still awaiting some of the tests to see if I have to have IT chemo or not. I feel like I have the best chance for being cured here, so we are making it work for me to have all my treatments here, even though I live in Ca.

    Anyway, I guess we are not PBL mates afterall, but I think there are enough similarities to our situations. Incidentally, you may have already experienced this, but while on the Prednisone, my limp went away and I have had much less pain. In fact, I was released from the hospital today and I walked slightly over 2 miles today, not all at once but cumulatively. I do know that some pain will occur once the Prednisone wears off and it may also be because the bone marrow is repairing (yahoo, I will look forward to that). I hope you are continuing to feel better!

    Cheers,
    Diane/Scubamom

  5. #15
    Regular User
    Join Date
    Mar 2017
    Posts
    44
    Hello Diane,

    Thank you for your update. I had been wondering how things were going for you, what with Hurricane Harvey hitting Texas etc.

    I am sorry to read that your latest biopsy demonstrated transformation of your lymphoma. This evolution is always a possibility (increasing by about 3% each year) and was, of course, to be suspected with so many distant bone lesions. It is good that you have complete faith in your medical team and keep an optimistic outlook.

    Dose-Adjusted R-EPOCH is basically R-CHOP plus Etoposide, so I suppose that most of my experience with treatment may still be useful to you...

    I suppose you have discussed the short and long-term effects to be expected from treatment with your doctor. Bone recovery is definitely not instant, and in my experience at least, it is rather a several-year long process, so I would definitely attribute your feeling better to the high-dose Prednisone.

    Prednisone, being a steroid, works in many different ways - it stimulates, reduces inflammation and alleviates pain, so you may feel much better while you are on it, but you may want to take that into account and not overdo things, as the pain and discomfort could be back with a vengeance within a couple of days after your last dose...

    I wish you some smooth sailing through your treatment, and the best possible results, and will be looking forward to reading your updates.

    Roz

  6. #16
    Regular User
    Join Date
    Aug 2017
    Posts
    18
    Greetings Roz,

    Sorry it has taken me so long to provide a response and update. I have been very lucky and my significant improvement and ability to walk without a limp has been maintained with or without the Prednisone! I have not taken any pain medications since I started my first treatment and I have been able to walk anywhere from 2 to 4 miles daily! I think this has helped in so many ways with dealing with the unpleasant side effects of the treatments as I have not had much trouble with constipation during or between rounds or lack of appetite between rounds. I have recently completed round 3, which for me, was easier than round 2. I had a 2nd MRI of my brain and a second PET-scan and the results showed almost no evidence of Lymphoma! So, the treatments are working and boy do I feel fortunate! As an aside, my Dr's are not fully convinced that I ever had Follicular with a transformation to DLBCL. I don't know if we will ever know for sure, but my primary Dr. mentioned the word remission when discussing my results and that is so awesome! I feel like I may be getting my life back once I finish the treatments and that is what I am focusing on!

    All of this is not to say that there have not been challenges along the way. The 2nd round was pretty rough and I also wound up in the ER between round 2 and 3 due to spiking a fever. After a bunch of tests, they found an infection in my PICC, so it was removed. I do still have to complete the remaining three rounds and also one prophylactic lumbar puncture infusion of Methotrexate per round.

    I hope that things are improving for you and that you are enjoying life! Stay strong!

    Cheers,
    Diane

  7. #17
    Regular User
    Join Date
    Mar 2017
    Posts
    44
    Hello Diane,

    What a pleasure to read such fantastic news! You have good reason to be in high spirits, with things going so well - this is the best encouragement to keep ploughing through the remainder of treatment.

    I am amazed at how fast your symptoms and lesions seem to have resolved - I haven't had that luck...

    Last time I saw my hematologist - in early September - I remarked on how my bone lesions didn't seem to be changing much (last MRI was end of June), and then for the first time since the beginning of all this, he replied "as long as they're not increasing in size, we're happy". He then went on to say that I was probably still having microfractures (to account for the pain I'm still experiencing).

    I must say, that was quite a change from the usual discourse :-{.

    Anyhow, it is really good to hear from others with spectacular improvements!

    Thanks for sharing your news. I will be looking forward to your updates, and wish you continued smooth sailing.

    Roz

  8. #18
    Top User RobLee's Avatar
    Join Date
    Jul 2016
    Location
    Florida Suncoast
    Posts
    746
    Hi Roz, and Diane. I have not contributed to your thread since March, but a lot has happened since then. Let me start out by saying that my wife had her first six month scan on Monday and learned this week that she is still in full remission. We were of course very relieved. She had tremendous scanxiety going into this week. Her hemo-onc showed us the CT from last December when she was first admitted and we were shocked at how much of her spine had been eaten away by the cancer. He said that she had been just weeks away from paralysis. Also the need for the very painful, repeated spinal infusions of methotrexate now made a lot of sense.

    She is still troubled by pain in her pelvis from where they took the biopsy (fortunately they did not biopsy the spine!) and he informed her that the pain was not the result of the biopsy, but rather was due to - again - the extent of bone loss there from the cancer itself, and suggested that perhaps an orthopedic surgeon may be able to reinforce the area. She has returned to all of her previous physical activities but is saddened by her loss of physical strength. The primary result of her hip pain is difficulty sleeping and she takes her nightly cocktail of pain meds to knock her out. The micro fractures you mentioned may be the cause for this. I will pass that along.

    As for me, well, unrelated to lymphoma, but my cancer predated hers by several years. This being October I have "celebrated" five years since my first cancer-related surgery, have had two more surgeries in recent months just since my last post here and as of two weeks ago have just completed eight weeks of daily radiation. Now the scanxiety is mine, as next Tuesday I have an MRI which may determine whether or not the mass in my throat might be cancerous. I know that "it's not cancer until they say it's cancer", but still I can't help but worry. The treatments for H&N cancer sounds brutal, and I won't even know until 2019, more than a year away, whether or not the combined therapies for my PCa did their job. When it rains, it pours!

    Good luck to you both...
    Remember, remember... MOVEMBER ( ˇ෴ˇ )

    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct PSA 20 lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: 18 months Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 tx (70 Gy) RapidArc IMRT 8/14-10/9

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

  9. #19
    Regular User
    Join Date
    Mar 2017
    Posts
    44
    Hello RobLee,
    Tests (especially imaging) seem to be constantly trying for anyone who has been through a cancer diagnosis and treatment... Glad to read that Mrs Lee's remission has been re-confirmed. I hope the pain in her hip subsides soon. Perhaps, if she hasn't had that yet, some physiotherapy and massage could help speed up her recovery - I know it did (still does) help me.
    Sorry to hear of your own increasing concern though... I will be keeping my fingers crossed until Tuesday, hoping that that lump in your throat is benign.
    I believe it is about time the two of you had some peace and quiet for a while!
    Do keep us updated on your results.
    Kind regards,
    Roz

 

Similar Threads

  1. Desperately seeking reassurance about colon cancer
    By 22yoboy in forum Worried About Possible Cancer
    Replies: 16
    Last Post: 08-31-2015, 03:42 AM
  2. Hi. "I have lymphoma." "What's that?" "It's cancer."
    By Sandy_2012 in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 44
    Last Post: 07-02-2013, 02:29 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •