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  • Bleomycin & oxygen

    This has been on my mind awhile now since I finished BEP back in June and I'd like to know what if anything others may be doing...well here's what I'm trying to ask: in the event that emergency medical care is needed how do you communicate that you've had Bleo treatment so as to prevent someone from slapping an oxygen mask on you? Is there a bracelet EMS is meant to check for to deal with us, a special 'hey wait I've had BLEO' tattoo we should all have, something else?
    Last edited by WilliamCT; 10-30-08, 09:09 PM.
    Jan08 Right I/O >> surveillance >> Apr-Jun08 chemo 3xBEP >> back on surveillance

  • #2
    Russell has had the toxicity, so this is especially an issue. Most of the people that I work with in the hospital do not even have a clue what I am talking about...ER staff included. it is one of those specialy areas. It is protocol for most ambulances to put 15 liters of oxygen onto almost anyone without a blink of an eye. Russell has been intstructed never to have oxygen as long as he lives. (his RPLND was done on room air O2 levels!!) He does wear a bracelet. Most hospitals or clinics have information, look in the social workers office. As well I have seen them at good drug stores. I bought his at a jewelry store, hoping it would be more durable. I still worry that the request on the underside is so crazy that medics won't understand and will just do what they know and do most often. (I want to have a tatoo "no oxygen" placed under his nose!!) Education is a great way to go. I would like to get a good and easy to understand document to pass out to the ambulance fire stations in the area or perhaps the life support training classes. Newer medical students and nurses have more awareness. Cancer concerns are taught more regularly now. As the pulmonologist shared that the steroids will most likely not work a second time, this topic is near and dear to my heart. Thanks for bringing it to light! Sharon
    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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    • #3
      William,
      If I had a concern like this, I'd get a medic alert bracelet. In addition to Sharon's suggestion, you can google this and find several different kinds. I bought one that is wide and soft like a wrist sweat band but with a zippered pouch. I wear it while bicycling just in case. It has my name, birthdate, emergency contacts, medical history, prescriptions, allergies, etc.
      "Statistics are human beings with the tears wiped off" - Paul Brodeur
      Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)

      Comment


      • #4
        I think your questions also speaks to a confusion I'm having. Does most everyone who has bleo always show lung toxicity? Is it only some? And how do the docs know? And does all toxicity mean no oxygen forever or do some handle it OK and recover lung function over time?

        Is it a shot in the dark until they actually put the oxygen on you?

        Greg's getting bleo right now, and they doctor's discussing taking him off it so he can have a respirator for surgery, but if he's handling it OK, why would you do that?

        And if it is this risky, why do they use it if 4xEP is generally as effective?

        Thanks,
        Mary
        March 2005- diagnosis (95% embryonal, 5% yolk sac, 5% something else): Stage I-A/June 2005- L-RPLND (Johns Hopkins): All Nodes Clear/October 2008 (Recurrence): Stage III-C AFP: over 24,000/10/08- 1/09: 4xBEP:/July 2010 [: Stage III-C AFP: over 29,000/July 2010- August 2010: 2xVeIP (vinblastine, ifosfamide, cisplatin)/9/10-11/10: 2x HDC with stem rescue (no complications thus far)

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        • #5
          The Joys of Bleo

          Originally posted by TheTippingPoint View Post
          I think your questions also speaks to a confusion I'm having. Does most everyone who has bleo always show lung toxicity? Is it only some? And how do the docs know? And does all toxicity mean no oxygen forever or do some handle it OK and recover lung function over time?

          Is it a shot in the dark until they actually put the oxygen on you?

          Greg's getting bleo right now, and they doctor's discussing taking him off it so he can have a respirator for surgery, but if he's handling it OK, why would you do that?

          And if it is this risky, why do they use it if 4xEP is generally as effective?

          Thanks,
          Mary
          Mary,

          4 EP is not the same as 4 BEP. I was offered TIP as the primary treatment to skip the Bleo as part of a clinical study though I declined. In retrospect, I'm not sure if that was such a wise move. TIP is commonly used as a secondary treatment not primary. As far as I know, the ways to check for bleo toxicity are:
          1. Pulmonary function test
          2. CT Scan
          3. Chest X-rays

          I think your lung functions do recover although your question of no O2 forever is an interesting one that I hope someone can answer.

          Regards,
          Steven

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          • #6
            Originally posted by S L View Post

            I think your lung functions do recover although your question of no O2 forever is an interesting one that I hope someone can answer.
            yes, this is an underlying question which I'd welcome any comments on
            Jan08 Right I/O >> surveillance >> Apr-Jun08 chemo 3xBEP >> back on surveillance

            Comment


            • #7
              The toxicity is still curious to everyone. It is not well understood by the medical community. It has patterns, but they do not know exactly why some people not others. The toxic reaction causes a fibrosis. When it starts the treatment so far is high dose steroids. There is controvery that the steroids are responisble for stopping the reaction, that the patient outcome may have been the same without the steroids. but the reaction causes an extreme risk, so high dose steroids are the choice. Russell's was diagnosed with chest film, then they followed it with high resolution CT scans and pulmonary functin tests. The damage done is the damage that he lives with. The symptoms have gone away, but he has lost the lung volume. Fibrosis is like scarring in the lung. His node dissection was done on room air level O2. The pulmonologist has recently shared...no O2 for life. O2 seems to precipitate the reaction. A second round with the toxicity...we are told that the steroids will most likely not be affective the second time. Most people do well on the Bleo. What is concerning is that late occurances of the toxicity appear. Studies are looking at babies and young children who have had Bleo. The toxicity has surfaced up to 10 years later with unknown causes, so it is well worth watching for anyone who has had Bleo. Because of the unknowns, the risk of oxygen seems to stay in the highlight. It seems to be the place where some people do just fine, so then that becomes the norm. The concerns for risk dilute, people become relaxed, then whamoo, some pops up with the symptoms......people perk up again. My suggestion would be to keep educating yourself. As with the cancer, the puzzle pieces start going together and pretty soon a picture forms. Just wish it was a prettier picture!!!! Also of huge concern to me is the fact that most care providers no nothing of Bleomycin Toxicity or the risks to cancer survivors who have had Bleomycin. Hope to put some energy into that one soon. take care, Sharon
              Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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              • #8
                Originally posted by TheTippingPoint View Post
                I think your questions also speaks to a confusion I'm having. Does most everyone who has bleo always show lung toxicity? Is it only some? And how do the docs know? And does all toxicity mean no oxygen forever or do some handle it OK and recover lung function over time?

                Is it a shot in the dark until they actually put the oxygen on you?

                Greg's getting bleo right now, and they doctor's discussing taking him off it so he can have a respirator for surgery, but if he's handling it OK, why would you do that?

                And if it is this risky, why do they use it if 4xEP is generally as effective?

                Thanks,
                Mary
                Most people who receive bleo do not develop pulmonary toxicity. I think it is less than 10% of all patients. I had 3 cycles of bleo, and although I had some changes in my pulmonary function test, I did not develop toxicity or have any clinical symptoms. Usually toxicity is diagnosed when the patient has a dry cough, or changes in ct/xray images. I wouldn't worry too much about it unless you start to develop symptoms.
                Primary Mediastinal Nonseminoma germ cell tumor
                Diagnosed-Ocotber 07. Mass 8x7 c.m.
                AFP-12,000, HCG-Normal, LDH-Normal
                4 BEP Finished Dec 21st 07
                Surgery March 3rd 08
                Path of residual mass-necrotic tissue, negative stain for afp, no viable yolk sak cells
                AFP- 9, HCG- Normal, LDH- Normal
                Since March 3rd-Surveillance
                All ct scans have been clear and AFP has been stable at 9

                Comment


                • #9
                  bleo

                  with your first question i would go out and get a bracelet/ necklace. i wear a necklace with med alert. not sure for how long to wear but im guessin it will be for awhile. at my work they have an outfit come in to do pulm. tests. dr. orders is to have them out at the clinic. i told the tech that and he did not have a problem with that. as emt's tend to crank the 02 up if something were to happen. guess we have made it this far no need to take a chance and not have a med alert. hope this helps
                  severe back pain ( found to be tumor rpgct) no pain/irregularities with twins at all
                  diagnosed 11-15-06 stage 3c mets to lungs/shortness of breath, choriocarcinoma, hcg 212,000
                  11-16-06 1st of 4 rnds. in patient bep
                  2-07 1st of 3 rnds. in patient salvage tip
                  met dr. einhorn 4-17-07 ultra-sound (1st one)
                  5-10-07 left i/o (immature teratoma)
                  7-12-07 rplnd (dr.foster)
                  8-16-07 all-clear and in surveillance mode
                  started TRT...androgel 12-5-08
                  fight the good fight...you can win

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                  • #10
                    Fed - do you know if anyone studied the use of retinoids in bleo-induced lung problems?

                    I was at a pulmonary congress last month and saw a presentation on some very early data on retinoids in COPD. The investigators induced COPD in rats with bleomycin and then treated with retinoids, with some positive results. The down side is that retinoids induce tissue growth which would be the opposite of what you're wanting to achieve with BEP. But I wondered if it might be an option for later and I thought, if anyone would know, it would be Fed.
                    Husband dx Jan 08, Age 43
                    CT and markers clear
                    Right I/O Jan 31 08
                    100% Seminoma, contained to testicle
                    17 days RT finished 3/27/08

                    Comment


                    • #11
                      Originally posted by Mrs Moggi View Post
                      Fed - do you know if anyone studied the use of retinoids in bleo-induced lung problems?
                      Not that I know of. Retinoid therapy is used for cancers like acute promyelocytic leukemia and in some pediatric cancers such as neuroblastoma. Retinoid activity has to do with the nuclear receptor RXR, but I don't know exactly how it would help out.
                      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                      11.22.06 -Dx the day before Thanksgiving
                      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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                      • #12
                        In COPD, ir restored the lung tissue (albeit a rat's lung) that had been damaged by bleo.
                        Husband dx Jan 08, Age 43
                        CT and markers clear
                        Right I/O Jan 31 08
                        100% Seminoma, contained to testicle
                        17 days RT finished 3/27/08

                        Comment


                        • #13
                          Oh, great. Another new one on me. Because Jay has had Bleo, he shouldn't have oxygen is what I am getting from this. His last CTSCan said the lungs showed mild to moderate scattered fibroatelectassis with no pulmonary nodules. I didn't even realize that that was not a good thing. What with the two hernias, the moderate degenerative changes in the spine and the fact that he is going to have to have an RPLND and the doctor will probably have to take his kidney at the same time. I suppose we could add it to his medical bracelet that he already has because of his allergies.
                          Diagnosed Mixed Germ Cell tumor Carcinoma and classic seminoma StageIIC 6*8cmbulky June 26-08
                          Left I/O June 26-08 4*BEP July-08-Sept-08
                          Mets to Abdomin/chest,
                          Stage III, , 6*8 cm Jul 08
                          Markers normalized Nov08, residual tumor 3*2cm in abd. 13mm in chest. Spinal Stenosis,Neuropathy RPLND feb 09
                          Found all three: Cancer, teratoma and scar tissue
                          10/09 B-HCG up to 39.90, recurrent TC, 2*VIP 12/09, TI started 05/11/2010, stem cell infusion 5/18/2010 day of rebirth
                          08/10 all clear

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                          • #14
                            I have read about studies with n-acetylcystein. Not sure if there is a magic answer. We have pretty much been told that the damage done is scar and that is it. Now at 30% lung volume loss. It is very concerning to me that people who have pulmonary function changes are not being followed by a pulmonologist. As well, there should be huge alerts regarding oxygen administration. It is not to frighten people, but to prevent a future problem. Bleomycin is given to babies. The concern today, unlike years before is that people are surviving their cancer. The potential problem was not a concern before, just by the fact the people did not survive long. Now...what a shame to get a person past cancer and then create what could have been an avoidable problem! The oxygen/bleomycin/fibrosis concern has developed in patients up to ten years after administration of Bleomycin for no known reason. Oxygen seems to precipitate, although the mechanism is still not completely understood. As I go along, it is very clear that major oncology centers are well aware of the concern, but most other care areas are not. The ER docs that I work with have never heard of it...nor the nurses or the paramedics. Protocol for an ambulance ride is 15 liters of O2. Protection for the prevention of a potential problem should be at the top of the list for any person who has has Bleomycin. it is a matter of educating the medical field. It is frightening to think about and feels like an ugle thorn in the foot, but I believe we would do better to stand strong with the knowledge and keep working to educate for awareness and protection as a cancer survivor's right. From Russell's pulmonologist to Russell..."if someone puts oxygen on you, rip it off." That was the statement given to him before his node dissection. Now keep in mind he had the full blown toxicity, but the toxicity is what we need to prevent, for everyone. Now that light on this subject is shining...the anesthesiologist at my work does his Bleo patients on room air levels through the surgery. He smiles thinking that he may have avoided a huge problem. Cute when his eyes light up over his surgical mask!! take care, Sharon
                            Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                            • #15
                              Donít mean to sound ignorant, but what exactly (or potentially) happens when oxygen is introduced to patients that have received Bleo? Can the mix cause fibrosis in patients without past problems or does it expand fibrosis in patients with pulmonary toxicity. Always understood that Bleo & O2 donít go together, but never got exactly why.
                              JSAT
                              Right I/O 04/01/08 - 100% Seminoma
                              Normal Markers - Bulky Node (+/- 5cm) - Lungs Clear
                              3xBEP Started on 04/28/08

                              Discontinued Bleo due to pulmonary damage Ĺ way through
                              Switched to EP Cycles on 06/09/08 (2BEP & 2EP)

                              Clean Scan on 08/29/08

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