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Thread: "Desperately" Seeking Primary Bone Lymphoma Mates!

  1. #11
    Regular User
    Join Date
    Mar 2017
    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.


  2. #12
    Newbie Regular User
    Join Date
    Aug 2017
    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!

  3. #13
    Regular User
    Join Date
    Mar 2017

    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.



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